In a race to cure his daughter, a Google programmer enters the world of hyper-personalized drugs.
Erika Check Hayden
February 26, 2020
To create atipeksen, Yu borrowed from recent biotech successes like gene therapy. Some new drugs, including cancer therapies, treat disease by directly manipulating genetic information inside a patient’s cells. Now doctors like Yu find they can alter those treatments as if they were digital programs. Change the code, reprogram the drug, and there’s a chance of treating many genetic diseases, even those as unusual as Ipek’s.
The new strategy could in theory help millions of people living with rare diseases, the vast majority of which are caused by genetic typos and have no treatment. US regulators say last year they fielded more than 80 requests to allow genetic treatments for individuals or very small groups, and that they may take steps to make tailor-made medicines easier to try. New technologies, including custom gene-editing treatments using CRISPR, are coming next.
Where it had taken decades for Ionis to perfect its drug, Yu now set a record: it took only eight months for Yu to make milasen, try it on animals, and convince the US Food and Drug Administration to let him inject it into Mila’s spine.
“I never thought we would be in a position to even contemplate trying to help these patients,” says Stanley Crooke, a biotechnology entrepreneur and founder of Ionis Pharmaceuticals, based in Carlsbad, California. “It’s an astonishing moment.”
Right now, though, insurance companies won’t pay for individualized gene drugs, and no company is making them (though some plan to). Only a few patients have ever gotten them, usually after heroic feats of arm-twisting and fundraising. And it’s no mistake that programmers like Mehmet Kuzu, who works on data privacy, are among the first to pursue individualized drugs. “As computer scientists, they get it. This is all code,” says Ethan Perlstein, chief scientific officer at the Christopher and Dana Reeve Foundation.
A nonprofit, the A-T Children’s Project, funded most of the cost of designing and making Ipek’s drug. For Brad Margus, who created the foundation in 1993 after his two sons were diagnosed with A-T, the change between then and now couldn’t be more dramatic. “We’ve raised so much money, we’ve funded so much research, but it’s so frustrating that the biology just kept getting more and more complex,” he says. “Now, we’re suddenly presented with this opportunity to just fix the problem at its source.”
Ipek was only a few months old when her father began looking for a cure. A geneticist friend sent him a paper describing a possible treatment for her exact form of A-T, and Kuzu flew from Sunnyvale, California, to Los Angeles to meet the scientists behind the research. But they said no one had tried the drug in people: “We need many more years to make this happen,” they told him.
Kuzu didn’t have years. After he returned from Los Angeles, Margus handed him a thumb drive with a video of a talk by Yu, a doctor at Boston Children’s Hospital, who described how he planned to treat a young girl with Batten disease (a different neurodegenerative condition) in what press reports would later dub “a stunning illustration of personalized genomic medicine.” Kuzu realized Yu was using the very same gene technology the Los Angeles scientists had dismissed as a pipe dream.
That technology is called “antisense.” Inside a cell, DNA encodes information to make proteins. Between the DNA and the protein, though, come messenger molecules called RNA that ferry the gene information out of the nucleus. Think of antisense as mirror-image molecules that stick to specific RNA messages, letter for letter, blocking them from being made into proteins. It’s possible to silence a gene this way, and sometimes to overcome errors, too.
Though the first antisense drugs appeared 20 years ago, the concept achieved its first blockbuster success only in 2016. That’s when a drug called nusinersen, made by Ionis, was approved to treat children with spinal muscular atrophy, a genetic disease that would otherwise kill them by their second birthday.
Yu, a specialist in gene sequencing, had not worked with antisense before, but once he’d identified the genetic error causing Batten disease in his young patient, Mila Makovec, it became apparent to him he didn’t have to stop there. If he knew the gene error, why not create a gene drug? “All of a sudden a lightbulb went off,” Yu says. “Couldn’t one try to reverse this? It was such an appealing idea, and such a simple idea, that we basically just found ourselves unable to let that go.”
Yu admits it was bold to suggest his idea to Mila’s mother, Julia Vitarello. But he was not starting from scratch. In a demonstration of how modular biotech drugs may become, he based milasen on the same chemistry backbone as the Ionis drug, except he made Mila’s particular mutation the genetic target. Where it had taken decades for Ionis to perfect a drug, Yu now set a record: it took only eight months for him to make milasen, try it on animals, and convince the US Food and Drug Administration to let him inject it into Mila’s spine.
“What’s different now is that someone like Tim Yu can develop a drug with no prior familiarity with this technology,” says Art Krieg, chief scientific officer at Checkmate Pharmaceuticals, based in Cambridge, Massachusetts.
As word got out about milasen, Yu heard from more than a hundred families asking for his help. That’s put the Boston doctor in a tough position. Yu has plans to try antisense to treat a dozen kids with different diseases, but he knows it’s not the right approach for everyone, and he’s still learning which diseases might be most amenable. And nothing is ever simple—or cheap. Each new version of a drug can behave differently and requires costly safety tests in animals.
Kuzu had the advantage that the Los Angeles researchers had already shown antisense might work. What’s more, Margus agreed that the A-T Children’s Project would help fund the research. But it wouldn’t be fair to make the treatment just for Ipek if the foundation was paying for it. So Margus and Yu decided to test antisense drugs in the cells of three young A-T patients, including Ipek. Whichever kid’s cells responded best would get picked.
While he waited for the test results, Kuzu raised about $200,000 from friends and coworkers at Google. One day, an email landed in his in-box from another Google employee who was fundraising to help a sick child. As he read it, Kuzu felt a jolt of recognition: his coworker, Jennifer Seth, was also working with Yu.
Seth’s daughter Lydia was born in December 2018. The baby, with beautiful chubby cheeks, carries a mutation that causes seizures and may lead to severe disabilities. Seth’s husband Rohan, a well-connected Silicon Valley entrepreneur, refers to the problem as a “tiny random mutation” in her “source code.” The Seths have raised more than $2 million, much of it from co-workers.
By then, Yu was ready to give Kuzu the good news: Ipek’s cells had responded the best. So last September the family packed up and moved from California to Cambridge, Massachusetts, so Ipek could start getting atipeksen. The toddler got her first dose this January, under general anesthesia, through a lumbar puncture into her spine.
After a year, the Kuzus hope to learn whether or not the drug is helping. Doctors will track her brain volume and measure biomarkers in Ipek’s cerebrospinal fluid as a readout of how her disease is progressing. And a team at Johns Hopkins will help compare her movements with those of other kids, both with and without A-T, to observe whether the expected disease symptoms are delayed.
One serious challenge facing gene drugs for individuals is that short of a healing miracle, it may ultimately be impossible to be sure they really work. That’s because the speed with which diseases like A-T progress can vary widely from person to person. Proving a drug is effective, or revealing that it’s a dud, almost always requires collecting data from many patients, not just one. “It’s important for parents who are ready to pay anything, try anything, to appreciate that experimental treatments often don’t work,” says Holly Fernandez Lynch, a lawyer and ethicist at the University of Pennsylvania. “There are risks. Trying one could foreclose other options and even hasten death.”
Kuzu says his family weighed the risks and benefits. “Since this is the first time for this kind of drug, we were a little scared,” he says. But, he concluded, “there’s nothing else to do. This is the only thing that might give hope to us and the other families.”
Another obstacle to ultra-personal drugs is that insurance won’t pay for them. And so far, pharmaceutical companies aren’t interested either. They prioritize drugs that can be sold thousands of times, but as far as anyone knows, Ipek is the only person alive with her exact mutation. That leaves families facing extraordinary financial demands that only the wealthy, lucky, or well connected can meet. Developing Ipek’s treatment has already cost $1.9 million, Margus estimates.
Some scientists think agencies such as the US National Institutes of Health should help fund the research, and will press their case at a meeting in Bethesda, Maryland, in April. Help could also come from the Food and Drug Administration, which is developing guidelines that may speed the work of doctors like Yu. The agency will receive updates on Mila and other patients if any of them experience severe side effects.
The FDA is also considering giving doctors more leeway to modify genetic drugs to try in new patients without securing new permissions each time. Peter Marks, director of the FDA’s Center for Biologics Evaluation and Research, likens traditional drug manufacturing to factories that mass-produce identical T-shirts. But, he points out, it’s now possible to order an individual basic T-shirt embroidered with a company logo. So drug manufacturing could become more customized too, Marks believes.
Custom drugs carrying exactly the message a sick kid’s body needs? If we get there, credit will go to companies like Ionis that developed the new types of gene medicine. But it should also go to the Kuzus—and to Brad Margus, Rohan Seth, Julia Vitarello, and all the other parents who are trying save their kids. In doing so, they are turning hyper-personalized medicine into reality.
Erika Check Hayden is director of the science communication program at the University of California, Santa Cruz.
When the polio vaccine was declared safe and effective, the news was met with jubilant celebration. Church bells rang across the nation, and factories blew their whistles. “Polio routed!” newspaper headlines exclaimed. “An historic victory,” “monumental,” “sensational,” newscasters declared. People erupted with joy across the United States. Some danced in the streets; others wept. Kids were sent home from school to celebrate.
One might have expected the initial approval of the coronavirus vaccines to spark similar jubilation—especially after a brutal pandemic year. But that didn’t happen. Instead, the steady drumbeat of good news about the vaccines has been met with a chorus of relentless pessimism.
The problem is not that the good news isn’t being reported, or that we should throw caution to the wind just yet. It’s that neither the reporting nor the public-health messaging has reflected the truly amazing reality of these vaccines. There is nothing wrong with realism and caution, but effective communication requires a sense of proportion—distinguishing between due alarm and alarmism; warranted, measured caution and doombait; worst-case scenarios and claims of impending catastrophe. We need to be able to celebrate profoundly positive news while noting the work that still lies ahead. However, instead of balanced optimism since the launch of the vaccines, the public has been offered a lot of misguided fretting over new virus variants, subjected to misleading debates about the inferiority of certain vaccines, and presented with long lists of things vaccinated people still cannot do, while media outlets wonder whether the pandemic will ever end.
This pessimism is sapping people of energy to get through the winter, and the rest of this pandemic. Anti-vaccination groups and those opposing the current public-health measures have been vigorously amplifying the pessimistic messages—especially the idea that getting vaccinated doesn’t mean being able to do more—telling their audiences that there is no point in compliance, or in eventual vaccination, because it will not lead to any positive changes. They are using the moment and the messaging to deepen mistrust of public-health authorities, accusing them of moving the goalposts and implying that we’re being conned. Either the vaccines aren’t as good as claimed, they suggest, or the real goal of pandemic-safety measures is to control the public, not the virus.
Five key fallacies and pitfalls have affected public-health messaging, as well as media coverage, and have played an outsize role in derailing an effective pandemic response. These problems were deepened by the ways that we—the public—developed to cope with a dreadful situation under great uncertainty. And now, even as vaccines offer brilliant hope, and even though, at least in the United States, we no longer have to deal with the problem of a misinformer in chief, some officials and media outlets are repeating many of the same mistakes in handling the vaccine rollout.
The pandemic has given us an unwelcome societal stress test, revealing the cracks and weaknesses in our institutions and our systems. Some of these are common to many contemporary problems, including political dysfunction and the way our public sphere operates. Others are more particular, though not exclusive, to the current challenge—including a gap between how academic research operates and how the public understands that research, and the ways in which the psychology of coping with the pandemic have distorted our response to it.
Recognizing all these dynamics is important, not only for seeing us through this pandemic—yes, it is going to end—but also to understand how our society functions, and how it fails. We need to start shoring up our defenses, not just against future pandemics but against all the myriad challenges we face—political, environmental, societal, and technological. None of these problems is impossible to remedy, but first we have to acknowledge them and start working to fix them—and we’re running out of time.
The past 12 months were incredibly challenging for almost everyone. Public-health officials were fighting a devastating pandemic and, at least in this country, an administration hell-bent on undermining them. The World Health Organization was not structured or funded for independence or agility, but still worked hard to contain the disease. Many researchers and experts noted the absence of timely and trustworthy guidelines from authorities, and tried to fill the void by communicating their findings directly to the public on social media. Reporters tried to keep the public informed under time and knowledge constraints, which were made more severe by the worsening media landscape. And the rest of us were trying to survive as best we could, looking for guidance where we could, and sharing information when we could, but always under difficult, murky conditions.
Despite all these good intentions, much of the public-health messaging has been profoundly counterproductive. In five specific ways, the assumptions made by public officials, the choices made by traditional media, the way our digital public sphere operates, and communication patterns between academic communities and the public proved flawed.
One of the most important problems undermining the pandemic response has been the mistrust and paternalism that some public-health agencies and experts have exhibited toward the public. A key reason for this stance seems to be that some experts feared that people would respond to something that increased their safety—such as masks, rapid tests, or vaccines—by behaving recklessly. They worried that a heightened sense of safety would lead members of the public to take risks that would not just undermine any gains, but reverse them.
The theory that things that improve our safety might provide a false sense of security and lead to reckless behavior is attractive—it’s contrarian and clever, and fits the “here’s something surprising we smart folks thought about” mold that appeals to, well, people who think of themselves as smart. Unsurprisingly, such fears have greeted efforts to persuade the public to adopt almost every advance in safety, including seat belts, helmets, and condoms.
But time and again, the numbers tell a different story: Even if safety improvements cause a few people to behave recklessly, the benefitsoverwhelmthe ill effects. In any case, most people are already interested in staying safe from a dangerous pathogen. Further, even at the beginning of the pandemic, sociological theory predictedthat wearing masks would be associated with increased adherence to other precautionary measures—people interested in staying safe are interested in staying safe—and empirical research quickly confirmedexactly that. Unfortunately, though, the theory of risk compensation—and its implicit assumptions—continue to haunt our approach, in part because there hasn’t been a reckoning with the initial missteps.
Rules in Place of Mechanisms and Intuitions
Much of the public messaging focused on offering a series of clear rules to ordinary people, instead of explaining in detail the mechanisms of viral transmission for this pathogen. A focus on explaining transmission mechanisms, and updating our understanding over time, would have helped empower people to make informed calculations about risk in different settings. Instead, both the CDC and the WHO chose to offer fixed guidelines that lent a false sense of precision.
In the United States, the public was initially told that “close contact” meant coming within six feet of an infected individual, for 15 minutes or more. This messaging led to ridiculous gaming of the rules; some establishments moved people around at the 14th minute to avoid passing the threshold. It also led to situations in which people working indoors with others, but just outside the cutoff of six feet, felt that they could take their mask off. None of this made any practical sense. What happened at minute 16? Was seven feet okay? Faux precision isn’t more informative; it’s misleading.
All of this was complicated by the fact that key public-health agencies like the CDC and the WHO were late to acknowledge the importance of some key infection mechanisms, such as aerosol transmission. Even when they did so, the shift happened without a proportional change in the guidelines or the messaging—it was easy for the general public to miss its significance.
Frustrated by the lack of public communication from health authorities, I wrote an article last July on what we then knew about the transmission of this pathogen—including how it could be spread via aerosols that can float and accumulate, especially in poorly ventilated indoor spaces. To this day, I’m contacted by people who describe workplaces that are following the formal guidelines, but in ways that defy reason: They’ve installed plexiglass, but barred workers from opening their windows; they’ve mandated masks, but only when workers are within six feet of one another, while permitting them to be taken off indoors during breaks.
Perhaps worst of all, our messaging and guidelines elided the difference between outdoor and indoor spaces, where, given the importance of aerosol transmission, the same precautions should not apply. This is especially important because this pathogen is overdispersed: Much of the spread is driven by a few people infecting many others at once, while most people do not transmit the virus at all.
After I wrote an article explaining how overdispersion and super-spreading were driving the pandemic, I discovered that this mechanism had also been poorly explained. I was inundated by messages from people, including elected officials around the world, saying they had no idea that this was the case. None of it was secret—numerous academic papers and articles had been written about it—but it had not been integrated into our messaging or our guidelines despite its great importance.
Crucially, super-spreading isn’t equally distributed; poorly ventilated indoor spaces can facilitate the spread of the virus over longer distances, and in shorter periods of time, than the guidelines suggested, and help fuel the pandemic.
Outdoors? It’s the opposite.
There is a solid scientific reason for the fact that there are relatively few documented cases of transmission outdoors, even after a year of epidemiological work: The open air dilutes the virus very quickly, and the sun helps deactivate it, providing further protection. And super-spreading—the biggest driver of the pandemic— appears to be an exclusively indoor phenomenon. I’ve been tracking every report I can find for the past year, and have yet to find a confirmed super-spreading event that occurred solely outdoors. Such events might well have taken place, but if the risk were great enough to justify altering our lives, I would expect at least a few to have been documented by now.
And yet our guidelines do not reflect these differences, and our messaging has not helped people understand these facts so that they can make better choices. I published my first article pleading for parks to be kept open on April 7, 2020—but outdoor activities are still banned by some authorities today, a full year after this dreaded virus began to spread globally.
We’d have been much better off if we gave people a realistic intuition about this virus’s transmission mechanisms. Our public guidelines should have been more like Japan’s, which emphasize avoiding the three C’s—closed spaces, crowded places, and close contact—that are driving the pandemic.
Scolding and Shaming
Throughout the past year, traditional and social media have been caught up in a cycle of shaming—made worse by being so unscientific and misguided. How dare you go to the beach? newspapers have scolded us for months, despite lacking evidence that this posed any significant threat to public health. It wasn’t just talk: Many cities closed parks and outdoor recreational spaces, even as they kept open indoor dining and gyms. Just this month, UC Berkeley and the University of Massachusetts at Amherst both banned students from taking even solitary walks outdoors.
Even when authorities relax the rules a bit, they do not always follow through in a sensible manner. In the United Kingdom, after some locales finally started allowing children to play on playgrounds—something that was already way overdue—they quickly ruled that parents must not socialize while their kids have a normal moment. Why not? Who knows?
On social media, meanwhile, pictures of people outdoors without masks draw reprimands, insults, and confident predictions of super-spreading—and yet few note when super-spreading fails to follow.
While visible but low-risk activities attract the scolds, other actual risks—in workplaces and crowded households, exacerbated by the lack of testing or paid sick leave—are not as easily accessible to photographers. Stefan Baral, an associate epidemiology professor at the Johns Hopkins Bloomberg School of Public Health, says that it’s almost as if we’ve “designed a public-health response most suitable for higher-income” groups and the “Twitter generation”—stay home; have your groceries delivered; focus on the behaviors you can photograph and shame online—rather than provide the support and conditionsnecessary for more people to keep themselves safe.
And the viral videos shaming people for failing to take sensible precautions, such as wearing masks indoors, do not necessarily help. For one thing, fretting over the occasional person throwing a tantrum while going unmasked in a supermarket distorts the reality: Most of the public has been complying with mask wearing. Worse, shaming is often an ineffective way of getting people to change their behavior, and it entrenches polarization and discourages disclosure, making it harder to fight the virus. Instead, we should be emphasizing safer behavior and stressing how many people are doing their part, while encouraging others to do the same.
Amidst all the mistrust and the scolding, a crucial public-health concept fell by the wayside. Harm reduction is the recognition that if there is an unmet and yet crucial human need, we cannot simply wish it away; we need to advise people on how to do what they seek to do more safely. Risk can never be completely eliminated; life requires more than futile attempts to bring risk down to zero. Pretending we can will away complexities and trade-offs with absolutism is counterproductive. Consider abstinence-only education: Not letting teenagers know about ways to have safer sex results in more of them having sex with no protections.
As Julia Marcus, an epidemiologist and associate professor at Harvard Medical School, told me, “When officials assume that risks can be easily eliminated, they might neglect the other things that matter to people: staying fed and housed, being close to loved ones, or just enjoying their lives. Public health works best when it helps people find safer ways to get what they need and want.””
Another problem with absolutism is the “abstinence violation” effect, Joshua Barocas, an assistant professor at the Boston University School of Medicine and Infectious Diseases, told me. When we set perfection as the only option, it can cause people who fall short of that standard in one small, particular way to decide that they’ve already failed, and might as well give up entirely. Most people who have attempted a diet or a new exercise regimen are familiar with this psychological state. The better approach is encouraging risk reduction and layered mitigation—emphasizing that every little bit helps—while also recognizing that a risk-free life is neither possible nor desirable.
Socializing is not a luxury—kids need to play with one another, and adults need to interact. Your kids can play together outdoors, and outdoor time is the best chance to catch up with your neighbors is not just a sensible message; it’s a way to decrease transmission risks. Some kids will play and some adults will socialize no matter what the scolds say or public-health officials decree, and they’ll do it indoors, out of sight of the scolding.
And if they don’t? Then kids will be deprived of an essential activity, and adults will be deprived of human companionship. Socializing is perhaps the most important predictor of health and longevity, after not smoking and perhaps exercise and a healthy diet. We need to help people socialize more safely, not encourage them to stop socializing entirely.
The Balance Between Knowledge And Action
Last but not least, the pandemic response has been distorted by a poor balance between knowledge, risk, certainty, and action.
Sometimes, public-health authorities insisted that we did not know enough to act, when the preponderance of evidence already justified precautionary action. Wearing masks, for example, posed few downsides, and held the prospect of mitigating the exponential threat we faced. The wait for certainty hampered our response to airborne transmission, even though there was almost no evidence for—and increasing evidence against—the importance of fomites, or objects that can carry infection. And yet, we emphasized the risk of surface transmission while refusing to properly address the risk of airborne transmission, despite increasing evidence. The difference lay not in the level of evidence and scientific support for either theory—which, if anything, quickly tilted in favor of airborne transmission, and not fomites, being crucial—but in the fact that fomite transmission had been a key part of the medical canon, and airborne transmission had not.
Sometimes, experts and the public discussion failed to emphasize that we were balancing risks, as in the recurring cycles of debate over lockdowns or school openings. We should have done more to acknowledge that there were no good options, only trade-offs between different downsides. As a result, instead of recognizing the difficulty of the situation, too many people accused those on the other side of being callous and uncaring.
And sometimes, the way that academics communicate clashed with how the public constructs knowledge. In academia, publishing is the coin of the realm, and it is often done through rejecting the null hypothesis—meaning that many papers do not seek to prove something conclusively, but instead, to reject the possibility that a variable has no relationship with the effect they are measuring (beyond chance). If that sounds convoluted, it is—there are historical reasons for this methodology and big arguments within academia about its merits, but for the moment, this remains standard practice.
At crucial points during the pandemic, though, this resulted in mistranslations and fueled misunderstandings, which were further muddled by differing stances toward prior scientific knowledge and theory. Yes, we faced a novel coronavirus, but we should have started by assuming that we could make some reasonable projections from prior knowledge, while looking out for anything that might prove different. That prior experience should have made us mindful of seasonality, the key role of overdispersion, and aerosol transmission. A keen eye for what was different from the past would have alerted us earlier to the importance of presymptomatic transmission.
Thus, on January 14, 2020, the WHO stated that there was “no clear evidence of human-to-human transmission.” It should have said, “There is increasing likelihood that human-to-human transmission is taking place, but we haven’t yet proven this, because we have no access to Wuhan, China.” (Cases were already popping up around the world at that point.) Acting as if there was human-to-human transmission during the early weeks of the pandemic would have been wise and preventive.
Later that spring, WHO officials stated that there was “currently no evidence that people who have recovered from COVID-19 and have antibodies are protected from a second infection,” producing many articles laden with panic and despair. Instead, it should have said: “We expect the immune system to function against this virus, and to provide some immunity for some period of time, but it is still hard to know specifics because it is so early.”
Similarly, since the vaccines were announced, too many statements have emphasized that we don’t yet know if vaccines prevent transmission. Instead, public-health authorities should have said that we have many reasons to expect, and increasing amounts of data to suggest, that vaccines will blunt infectiousness, but that we’re waiting for additional data to be more precise about it. That’s been unfortunate, because while many, many things have gone wrong during this pandemic, the vaccines are one thing that has gone very, very right.
As late as April 2020, Anthony Fauci was slammed for being too optimistic for suggesting we might plausibly have vaccines in a year to 18 months. We had vaccines much, much sooner than that: The first two vaccine trials concluded a mere eight months after the WHO declared a pandemic in March 2020.
Moreover, they have delivered spectacular results. In June 2020, the FDA said a vaccine that was merely 50 percent efficacious in preventing symptomatic COVID-19 would receive emergency approval—that such a benefit would be sufficient to justify shipping it out immediately. Just a few months after that, the trials of the Moderna and Pfizer vaccines concluded by reporting not just a stunning 95 percent efficacy, but also a complete elimination of hospitalization or death among the vaccinated. Even severe disease was practically gone: The lone case classified as “severe” among 30,000 vaccinated individuals in the trials was so mild that the patient needed no medical care, and her case would not have been considered severe if her oxygen saturation had been a single percent higher.
These are exhilarating developments, because global, widespread, and rapid vaccination is our way out of this pandemic. Vaccines that drastically reduce hospitalizations and deaths, and that diminish even severe disease to a rare event, are the closest things we have had in this pandemic to a miracle—though of course they are the product of scientific research, creativity, and hard work. They are going to be the panacea and the endgame.
And yet, two months into an accelerating vaccination campaign in the United States, it would be hard to blame people if they missed the news that things are getting better.
Yes, there are new variants of the virus, which may eventually require booster shots, but at least so far, the existing vaccines are standing up to them well—very, very well. Manufacturers are already working on new vaccines or variant-focused booster versions, in case they prove necessary, and the authorizing agencies are ready for a quick turnaround if and when updates are needed. Reports from places that have vaccinated large numbers of individuals, and even trials in places where variants are widespread, are exceedingly encouraging, with dramatic reductions in cases and, crucially, hospitalizations and deaths among the vaccinated. Global equity and access to vaccines remain crucial concerns, but the supply is increasing.
Here in the United States, despite the rocky rollout and the need to smooth access and ensure equity, it’s become clear that toward the end of spring 2021, supply will be more than sufficient. It may sound hard to believe today, as many who are desperate for vaccinations await their turn, but in the near future, we may have to discuss what to do with excess doses.
So why isn’t this story more widely appreciated?
Part of the problem with the vaccines was the timing—the trials concluded immediately after the U.S. election, and their results got overshadowed in the weeks of political turmoil. The first, modest headline announcing the Pfizer-BioNTech results in The New York Times was a single column, “Vaccine Is Over 90% Effective, Pfizer’s Early Data Says,” below a banner headline spanning the page: “BIDEN CALLS FOR UNITED FRONT AS VIRUS RAGES.” That was both understandable—the nation was weary—and a loss for the public.
Just a few days later, Moderna reported a similar 94.5 percent efficacy. If anything, that provided even more cause for celebration, because it confirmed that the stunning numbers coming out of Pfizer weren’t a fluke. But, still amid the political turmoil, the Moderna report got a mere two columns on The New York Times’ front page with an equally modest headline: “Another Vaccine Appears to Work Against the Virus.”
So we didn’t get our initial vaccine jubilation.
But as soon as we began vaccinating people, articles started warning the newly vaccinated about all they could not do. “COVID-19 Vaccine Doesn’t Mean You Can Party Like It’s 1999,” one headline admonished. And the buzzkill has continued right up to the present. “You’re fully vaccinated against the coronavirus—now what? Don’t expect to shed your mask and get back to normal activities right away,” began a recent Associated Press story.
People might well want to party after being vaccinated. Those shots will expand what we can do, first in our private lives and among other vaccinated people, and then, gradually, in our public lives as well. But once again, the authorities and the media seem more worried about potentially reckless behavior among the vaccinated, and about telling them what not to do, than with providing nuanced guidance reflecting trade-offs, uncertainty, and a recognition that vaccination can change behavior. No guideline can cover every situation, but careful, accurate, and updated information can empower everyone.
Take the messaging and public conversation around transmission risks from vaccinated people. It is, of course, important to be alert to such considerations: Many vaccines are “leaky” in that they prevent disease or severe disease, but not infection and transmission. In fact, completely blocking all infection—what’s often called “sterilizing immunity”—is a difficult goal, and something even many highly effective vaccines don’t attain, but that doesn’t stop them from being extremely useful.
As Paul Sax, an infectious-disease doctor at Boston’s Brigham & Women’s Hospital, put it in early December, it would be enormously surprising “if these highly effective vaccines didn’t also make people less likely to transmit.” From multiple studies, we already knew that asymptomatic individuals—those who never developed COVID-19 despite being infected—were much less likely to transmit the virus. The vaccine trials were reporting 95 percent reductions in any form of symptomatic disease. In December, we learned that Moderna had swabbed some portion of trial participants to detect asymptomatic, silent infections, and found an almost two-thirds reduction even in such cases. The good news kept pouring in. Multiple studies found that, even in those few cases where breakthrough disease occurred in vaccinated people, their viral loads were lower—which correlates with lower rates of transmission. Data from vaccinated populations further confirmed what many experts expected all along: Of course these vaccines reduce transmission.
What went wrong? The same thing that’s going wrong right now with the reporting on whether vaccines will protect recipients against the new viral variants. Some outlets emphasize the worst or misinterpret the research. Some public-health officials are wary of encouraging the relaxation of any precautions. Some prominent experts on social media—even those with seemingly solid credentials—tend to respond to everything with alarm and sirens. So the message that got heard was that vaccines will not prevent transmission, or that they won’t work against new variants, or that we don’t know if they will. What the public needs to hear, though, is that based on existing data, we expect them to work fairly well—but we’ll learn more about precisely how effective they’ll be over time, and that tweaks may make them even better.
A year into the pandemic, we’re still repeating the same mistakes.
The top-down messaging is not the only problem. The scolding, the strictness, the inability to discuss trade-offs, and the accusations of not caring about people dying not only have an enthusiastic audience, but portions of the public engage in these behaviors themselves. Maybe that’s partly because proclaiming the importance of individual actions makes us feel as if we are in the driver’s seat, despite all the uncertainty.
Psychologists talk about the “locus of control”—the strength of belief in control over your own destiny. They distinguish between people with more of an internal-control orientation—who believe that they are the primary actors—and those with an external one, who believe that society, fate, and other factors beyond their control greatly influence what happens to us. This focus on individual control goes along with something called the “fundamental attribution error”—when bad things happen to other people, we’re more likely to believe that they are personally at fault, but when they happen to us, we are more likely to blame the situation and circumstances beyond our control.
An individualistic locus of control is forged in the U.S. mythos—that we are a nation of strivers and people who pull ourselves up by our bootstraps. An internal-control orientation isn’t necessarily negative; it can facilitate resilience, rather than fatalism, by shifting the focus to what we can do as individuals even as things fall apart around us. This orientation seems to be common among children who not only survive but sometimes thrive in terrible situations—they take charge and have a go at it, and with some luck, pull through. It is probably even more attractive to educated, well-off people who feel that they have succeeded through their own actions.
You can see the attraction of an individualized, internal locus of control in a pandemic, as a pathogen without a cure spreads globally, interrupts our lives, makes us sick, and could prove fatal.
There have been very few things we could do at an individual level to reduce our risk beyond wearing masks, distancing, and disinfecting. The desire to exercise personal control against an invisible, pervasive enemy is likely why we’ve continued to emphasize scrubbing and cleaning surfaces, in what’s appropriately called “hygiene theater,” long after it became clear that fomites were not a key driver of the pandemic. Obsessive cleaning gave us something to do, and we weren’t about to give it up, even if it turned out to be useless. No wonder there was so much focus on telling others to stay home—even though it’s not a choice available to those who cannot work remotely—and so much scolding of those who dared to socialize or enjoy a moment outdoors.
And perhaps it was too much to expect a nation unwilling to release its tight grip on the bottle of bleach to greet the arrival of vaccines—however spectacular—by imagining the day we might start to let go of our masks.
The focus on individual actions has had its upsides, but it has also led to a sizable portion of pandemic victims being erased from public conversation. If our own actions drive everything, then some other individuals must be to blame when things go wrong for them. And throughout this pandemic, the mantra many of us kept repeating—“Wear a mask, stay home; wear a mask, stay home”—hid many of the real victims.
Study after study, in country after country, confirms that this disease has disproportionately hit the poor and minority groups, along with the elderly, who are particularly vulnerable to severe disease. Even among the elderly, though, those who are wealthier and enjoy greater access to health care have fared better.
The poor and minority groups are dying in disproportionately large numbers for the same reasons that they suffer from many other diseases: a lifetime of disadvantages, lack of access to health care, inferior working conditions, unsafe housing, and limited financial resources.
Many lacked the option of staying home precisely because they were working hard to enable others to do what they could not, by packing boxes, delivering groceries, producing food. And even those who could stay home faced other problems born of inequality: Crowded housing is associatedwith higher rates of COVID-19 infection and worse outcomes, likely because many of the essential workers who live in such housing bring the virus home to elderly relatives.
Individual responsibility certainly had a large role to play in fighting the pandemic, but many victims had little choice in what happened to them. By disproportionately focusing on individual choices, not only did we hide the real problem, but we failed to do more to provide safe working and living conditions for everyone.
For example, there has been a lot of consternation about indoor dining, an activity I certainly wouldn’t recommend. But even takeout and delivery can impose a terrible cost: One study of California found that line cooks are the highest-risk occupation for dying of COVID-19. Unless we provide restaurants with funds so they can stay closed, or provide restaurant workers with high-filtration masks, better ventilation, paid sick leave, frequent rapid testing, and other protections so that they can safely work, getting food to go can simply shift the risk to the most vulnerable. Unsafe workplaces may be low on our agenda, but they do pose a real danger. Bill Hanage, associate professor of epidemiology at Harvard, pointed me to a paper he co-authored: Workplace-safety complaints to OSHA—which oversees occupational-safety regulations—during the pandemic were predictive of increases in deaths 16 days later.
New data highlight the terrible toll of inequality: Life expectancy has decreased dramatically over the past year, with Black people losing the most from this disease, followed by members of the Hispanic community. Minorities are also more likely to die of COVID-19 at a younger age. But when the new CDC director, Rochelle Walensky, noted this terrible statistic, she immediately followed up by urging people to “continue to use proven prevention steps to slow the spread—wear a well-fitting mask, stay 6 ft away from those you do not live with, avoid crowds and poorly ventilated places, and wash hands often.”
Those recommendations aren’t wrong, but they are incomplete. None of these individual acts do enough to protect those to whom such choices aren’t available—and the CDC has yet to issue sufficient guidelines for workplace ventilation or to make higher-filtration masks mandatory, or even available, for essential workers. Nor are these proscriptions paired frequently enough with prescriptions: Socialize outdoors, keep parks open, and let children play with one another outdoors.
Vaccines are the tool that will end the pandemic. The story of their rollout combines some of our strengths and our weaknesses, revealing the limitations of the way we think and evaluate evidence, provide guidelines, and absorb and react to an uncertain and difficult situation.
But also, after a weary year, maybe it’s hard for everyone—including scientists, journalists, and public-health officials—to imagine the end, to have hope. We adjust to new conditions fairly quickly, even terrible new conditions. During this pandemic, we’ve adjusted to things many of us never thought were possible. Billions of people have led dramatically smaller, circumscribed lives, and dealt with closed schools, the inability to see loved ones, the loss of jobs, the absence of communal activities, and the threat and reality of illness and death.
Hope nourishes us during the worst times, but it is also dangerous. It upsets the delicate balance of survival—where we stop hoping and focus on getting by—and opens us up to crushing disappointment if things don’t pan out. After a terrible year, many things are understandably making it harder for us to dare to hope. But, especially in the United States, everything looks better by the day. Tragically, at least 28 million Americans have been confirmed to have been infected, but the real number is certainly much higher. By one estimate, as many as 80 million have already been infected with COVID-19, and many of those people now have some level of immunity. Another 46 million people have already received at least one dose of a vaccine, and we’re vaccinating millions more each day as the supply constraints ease. The vaccines are poised to reduce or nearly eliminate the things we worry most about—severe disease, hospitalization, and death.
Not all our problems are solved. We need to get through the next few months, as we race to vaccinate against more transmissible variants. We need to do more to address equity in the United States—because it is the right thing to do, and because failing to vaccinate the highest-risk people will slow the population impact. We need to make sure that vaccines don’t remain inaccessible to poorer countries. We need to keep up our epidemiological surveillance so that if we do notice something that looks like it may threaten our progress, we can respond swiftly.
And the public behavior of the vaccinated cannot change overnight—even if they are at much lower risk, it’s not reasonable to expect a grocery store to try to verify who’s vaccinated, or to have two classes of people with different rules. For now, it’s courteous and prudent for everyone to obey the same guidelines in many public places. Still, vaccinated people can feel more confident in doing things they may have avoided, just in case—getting a haircut, taking a trip to see a loved one, browsing for nonessential purchases in a store.
But it is time to imagine a better future, not just because it’s drawing nearer but because that’s how we get through what remains and keep our guard up as necessary. It’s also realistic—reflecting the genuine increased safety for the vaccinated.
Public-health agencies should immediately start providing expanded information to vaccinated people so they can make informed decisions about private behavior. This is justified by the encouraging data, and a great way to get the word out on how wonderful these vaccines really are. The delay itself has great human costs, especially for those among the elderly who have been isolated for so long.
Public-health authorities should also be louder and more explicit about the next steps, giving us guidelines for when we can expect easing in rules for public behavior as well. We need the exit strategy spelled out—but with graduated, targeted measures rather than a one-size-fits-all message. We need to let people know that getting a vaccine will almost immediately change their lives for the better, and why, and also when and how increased vaccination will change more than their individual risks and opportunities, and see us out of this pandemic.
We should encourage people to dream about the end of this pandemic by talking about it more, and more concretely: the numbers, hows, and whys. Offering clear guidance on how this will end can help strengthen people’s resolve to endure whatever is necessary for the moment—even if they are still unvaccinated—by building warranted and realistic anticipation of the pandemic’s end.
Hope will get us through this. And one day soon, you’ll be able to hop off the subway on your way to a concert, pick up a newspaper, and find the triumphant headline: “COVID Routed!”
Zeynep Tufekci is a contributing writer at The Atlantic and an associate professor at the University of North Carolina. She studies the interaction between digital technology, artificial intelligence, and society.
“Os pacientes que têm covid sentem muita sede. Tem momento que eles querem muita água. E aí você vê o paciente pedindo água e… você não pode, você não consegue, você está entubando alguém, vendo um outro paciente mais grave. E você não tem ninguém para dar essa assistência para esse paciente”. A médica Uildéia Galvão trabalha 12 horas por dia, todos os dias. Às vezes, 20 horas por dia, para dar conta dos pacientes que chegam ao Pronto Socorro 28 de agosto, em Manaus. A capital do Amazonas é uma das mais afetadas no Brasil pela crise do coronavírus e tem sido palco das histórias mais tristes da pandemia no Brasil. Superlotação em hospitais, avalanche de corpos nos cemitérios, centenas de mortos que não conseguem chegar ao hospital e morrem em casa.
Galvão atende os 120 leitos da Sala Rosa do PS, para onde são encaminhados os doentes graves de covid-19. Médica há 25 anos, ela não consegue aceitar essa nova modalidade de ‘hora da morte’ trazida pelo coronavírus: “É difícil você ver pessoas morrerem sozinhas. Sozinhas, sozinhas, sozinhas. Sozinhas”. Sim, ela repete o “sozinhas” cinco vezes como quem não acredita nas próprias palavras que saem da sua boca.
No 28 de agosto, não dá tempo de fazer uma teleconferência por celular na hora da despedida. No 28 de agosto, não dá tempo para nada. “Você vê pacientes quatro dias sem tomar banho, sem ter o asseio, porque você não tem o recurso humano ali para fazer isso”. O colapso do sistema de saúde de Manaus parece que estava para acontecer a qualquer momento, mas o coronavírus apressou as coisas. A doutora Galvão diz que é verdade que muitos profissionais de saúde pegaram o vírus e foram afastados, mas a bem da verdade, segundo ela, é que não havia recursos humanos suficientes há muito tempo.
Em plena pandemia, os profissionais de saúde dos pronto-socorros de Manaus estavam ainda para receber o salário de fevereiro. Em plena pandemia, os profissionais de saúde dos PSs de Manaus precisam comprar seus próprios equipamentos de proteção. Em plena pandemia, muitos dias sem que o laboratório de saúde pública do Amazonas não recolhesse material para fazer os testes de covid-19. E não é atraso em divulgar resultados. Não há coleta de material para produzir resultados mesmo. “E olha que só estamos atendendo pacientes realmente graves”, diz Uildeia.
Oficialmente, o Estado somava 476 mortes por covid-19 até sexta, e 5.723 infectados. Mas as imagens nos noticiários de cemitérios lotados e o choro na TV de famílias desesperadas deixam claro que a subnotificação ali é enorme. A distorção de dados parece mesmo gritante. Ao longo das semanas, o Brasil viu as imagens tenebrosas de enterros em valas comuns na cidade de Manaus até de madrugada. Pergunto à doutora Galvão se ela viu as imagens. “Não sei nem se é tocante, não sei se é trágica. Mas reflete realmente o nosso dia a dia. Tem sido bem difícil mesmo”.
Há duas semanas, o prefeito Arthur Vírgilio foi para as redes sociais dizer que a média diária de sepultamentos triplicou na cidade. Agora, quadruplicaram. No último domingo, houve um pico de 140 mortos. A média diária tem sido de 100. Em outros anos, os dias com maior pico de mortos não ultrapassava a 35 sepultamentos. No entanto, os dados informados ao Ministério da Saúde davam conta de apenas 17 mortos.
O prefeito ainda fez um outro alerta: o alto percentual de pessoas que morrem em casa, sem atendimento médico. Na segunda, mais de um terço das pessoas morreu em casa. A tempestade perfeita chegou em Manaus. Juntou um sistema de saúde já fragilizado, uma pandemia que levou uma avalanche de pacientes aos hospitais, uma população envelhecida aos 60 anos com uma série de doenças, propícias ao coronavírus e para coroar um completo desrespeito ao isolamento.
De acordo com os dados da start up In Loco, que tem feito um acompanhamento do movimento de celulares pelo país, desde o início do distanciamento social, em meados de março, o Amazonas foi o Estado que registrou os menores percentuais de adesão ao #fiqueemcasa. Durante a semana, bateu menos de 50%.
Mas ainda tem um outro ingrediente: o governador do Estado, Wilson Lima, do PSC. O pessoal não parece muito feliz com o governador, não. Na segunda, a assembleia legislativa do estado aprovou um pedido de intervenção federal na saúde do Amazonas. O pedido já foi encaminhado ao governo federal. Também o Sindicato dos Médicos entrou com um pedido de impeachment do governador na Assembleia Legislativa. O pedido foi aceito.
Além disso, o Ministério Público Federal e o Ministério Público do Estado dizem que o governador não está sendo transparente nos gastos com a pandemia. Uma ação foi ajuizada pedindo que o governador divulgue como gastou cada tostão que recebeu do governo federal para o combate ao coronavírus. E os profissionais da saúde fazem coro. O governo do Estado não respondeu aos diversos questionamentos feitos pela reportagem.
Desde que falamos com a doutora Galvão pela primeira vez, ela diz que algumas coisas melhoraram. Os equipamentos de proteção passaram a ser entregues, mesmo que em sistema de racionamento. “Mas é até bom que sejam racionados para não faltar”. Foram abertos mais leitos de retaguarda, o que ajudou a desafogar os prontos-socorros. E o Governo do Estado abriu uma linha de comunicação direta com os médicos, além de prometer organizar um cronograma para atualizar os pagamentos de 2020, para que os salários não atrasem mais.
Enquanto tudo isso acontece ao seu redor, a doutora Galvão, mesmo que sutilmente, demonstra seu ressentimento com os governantes do Estado. Ela fala daqueles que vão à mídia dizer que as pessoas estão morrendo porque falta atendimento. Isso recai sobre o pessoal que está na linha de frente, trabalhando quatro vezes mais do que trabalhavam e enfrentando a revolta da população. “A população tem dificuldade imensa de entender que não é o profissional de saúde que é responsável por criar estrutura de atendimento razoável para que a probabilidade de sucesso seja a melhor. Entendeu? E a gente não consegue desmistificar isso.”
— Qual é seu medo?, pergunto.
Do outro lado do telefone, um segundo de silêncio e a resposta:
— Meu medo é que isso demore muito. É exaustão. É muito cansativo. É exaustão mesmo.
— Você já está há quantos dias nesse ritmo?
— (um suspiro ainda maior que o primeiro). Nesse ritmo? Desde o dia 20 de março… por aí.
— Já faz 30 dias.
— É… já faz 30 dias.
Conversamos mais um pouco. Ela acha que o pico será na próxima semana. E conta sua desesperança com o descaso aos profissionais que não têm um líder que elabore um plano de ação. Ela acha que nem dá mais tempo. Sofre ao constatar que famílias largam seus velhinhos no hospital. “Eu disse para a minha filha que nem sempre é só problema do sistema de saúde. Existe uma crise humanitária também”.
Faço uma última pergunta:
— Se você pudesse falar em rede nacional, qual recado você daria?
A doutora responde, sem pestanejar:
— Fiquem em casa. Fiquem em casa o tempo que for possível e necessário. Deem atenção aos seus velhinhos, aos seus pais… A gente tem que aprender alguma coisa com isso. A gente vê hoje uma polaridade não só de política, de tudo, de ideia, de sentimento, ou você é isso ou você é aquilo. Eu acho que a gente tem que repensar tudo isso e ver para onde a gente quer andar com o nosso país, com nossa política. Não é possível que a gente não vai aprender que tem que ser mais humano, mais gentil e mais educado e saber escolher melhor quem são as pessoas que vão definir o futuro dos nossos netos, bisnetos. A gente tem hoje o que a gente tem, vai ter que aprender a conviver com isso fazendo o nosso melhor. Mas, no futuro, não é possível não ter algum mecanismo de mudança.
Josette Goulart é fundadora e editora da Lagartixa Diária, @lagartixadiaria
O encontro virtual, que vai ao ar amanhã, faz parte de uma série (youtube.com/rio2c) que vem substituir a conferência sobre economia criativa Rio2C, cuja realização neste mês foi cancelada. Coube-me moderar o diálogo entre Sonoo Thadaney, do Presence –centro da Universidade Stanford dedicado à humanização do atendimento de saúde–, e Jorge Moll Neto, do Instituto D’Or de Pesquisa e Ensino (Idor), conhecido como Gito.
O coronavírus CoV-2 já legou cerca de 3,5 milhões de infectados e 250 mil mortos (números subestimados). A pandemia é agravada por líderes de nações populosas que chegaram ao poder e nele se mantêm espalhando desinformação com ajuda de algoritmos de redes sociais que privilegiam a estridência e os vieses de confirmação de seus seguidores.
Você entendeu: Donald Trump (EUA, 1/3 dos casos no mundo) e Jair Bolsonaro (Brasil, um distante 0,2% do total, mas marchando para números dantescos). Trump corrigiu alguns graus no curso na nau de desvairados em que se tornou a Casa Branca; o Messias que não faz milagres ainda não deu sinais de imitá-lo, porque neste caso seria fazer a coisa certa.
Na teleconversa da Rio2C, Sonoo e Gito fizeram as perorações de praxe contra a substituição da ciência por ideologia na condução da pandemia. O diretor do Idor deu a entender que nunca viu tanta besteira saindo da boca de leigos e autointitulados especialistas.
A diretora do centro de Stanford, originária da Índia, disse que, se precisar preparar um frango tandoori, vai ligar e perguntar para quem sabe fazer. E não para qualquer médico que se aventura nos mares da epidemiologia dizendo que a Terra é plana, deduzo eu, para encompridar a metáfora, na esperança de que leitores brasileiros entendam de que deputado se trata.
Há razão para ver o vídeo da conversa (com legendas em português) e sair um pouco otimista. Gito afirmou que se dá mais importância e visibilidade para consequências não pretendidas negativas da tecnologia.
No caso, a IA e seus algoritmos dinâmicos, que tomam resultados em conta para indicar soluções, como apresentar em cada linha do tempo na rede social as notas com maior probabilidade de atraírem novos seguidores e de serem reproduzidas, curtidas ou comentadas (o chamado engajamento, que muitos confundem com sucesso).
Um bom nome para isso seria desinteligência artificial. A cizânia se espalha porque os usuários aprendem que receberão mais cliques quanto mais agressivos forem, substituindo por raiva os argumentos de que não dispõem para confirmar as próprias convicções e as daqueles que pensam como ele (viés de confirmação).
Já se pregou no passado que se deve acreditar mesmo que seja absurdo, ou porque absurdo (ouçam os “améns” com que fanáticos brindam Bolsonaro). Também já se disse que o sono da razão produz monstros.
O neurocientista do Idor prefere desviar a atenção para efeitos não pretendidos positivos das tecnologias. Cita as possibilidades abertas para enfrentar a Covid-19 com telefones celulares de última geração disseminados pelo mundo, mesmo em países pobres, como difusão de informação e bases de dados para monitorar mobilidade em tempos de isolamento social.
Há também os aplicativos multiusuário de conversa com vídeo, que facilitam o contato para coordenação entre colegas trabalhando em casa, a deliberação parlamentar a distância e, claro, as teleconsultas entre médicos e pacientes.
Sonoo diz que a IA libera profissionais de saúde para exercerem mais o que está na base da medicina, cuidar de pessoas de carne e osso. Mesmo que seja em ambiente virtual, o grande médico se diferencia do médico apenas bom por tratar o doente, não a doença.
Fica tudo mais complicado quando o espectro do contágio pelo corona paira sobre todos e uma interface de vídeo ou a parafernália na UTI afasta o doutor do enfermo. Mas há dicas simples para humanizar esses encontros, de portar uma foto da pessoa por trás da máscara a perguntar a origem de objetos que se vê pela tela na casa do paciente (mais sugestões em inglês aqui: youtu.be/DbLjEsD1XOI).
Conversamos ainda sobre diversidade, equidade, acesso e outras coisas importantes. Para terminar, contudo, cabe destacar o chamado de Gito para embutir valores nos algoritmos e chamar filósofos e outros especialistas de humanidades para as equipes que inventam aplicações de IA.
Os dois governos mencionados, porém, são inimigos da humanidade, no singular (empatia, mas também conjunto de mulheres, homens, velhos, crianças, enfermos, sãos, deficientes, atletas, patriotas ou não, ateus e crentes) e no plural (disciplinas que se ocupam das fontes e razões do que dá certo ou dá errado nas sociedades humanas e na cabeça das pessoas que as compõem).
São os reis eleitos da desinteligência artificial.
Carl Bergstrom’s two disparate areas of expertise merged as reports of a mysterious respiratory illness emerged in January
Julia Carrie Wong, Tue 28 Apr 2020 11.00 BST
Carl Bergstrom is uniquely suited to understanding the current moment. A professor of biology at the University of Washington, he has spent his career studying two seemingly disparate topics: emerging infectious diseases and networked misinformation. They merged into one the moment reports of a mysterious respiratory illness emerged from China in January.
The coronavirus touched off both a pandemic and an “infodemic” of hoaxes, conspiracy theories, honest misunderstandings and politicized scientific debates. Bergstrom has jumped into the fray, helping the public and the press navigate the world of epidemiological models, statistical uncertainty and the topic of his forthcoming book: bullshit.
The following interview has been edited for length and clarity.
You’ve been teaching a course and have co-written a book about the concept of bullshit. Explain what you mean by bullshit?
The formal definition that we use is “language, statistical figures, data, graphics and other forms of presentation that are intended to persuade by impressing and overwhelming a reader or listener with a blatant disregard for truth or logical coherence”.
The idea with bullshit is that it’s trying to appear authoritative and definitive in a way that’s not about communicating accurately and informing a reader, but rather by overwhelming them, persuading them, impressing them. If that’s done without any allegiance to truth, or accuracy, that becomes bullshit.
We’re all used to verbal bullshit. We’re all used to campaign promises and weasel words, and we’re pretty good at seeing through that because we’ve had a lot of practice. But as the world has become increasingly quantified and the currency of arguments has become statistics, facts and figures and models and such, we’re increasingly confronted, even in the popular press, with numerical and statistical arguments. And this area’s really ripe for bullshit, because people don’t feel qualified to question information that’s given to them in quantitative form.
Are there bullshit narratives about the coronavirus that you are concerned about right now?
What’s happened with this pandemic that we’re not accustomed to in the epidemiology community is that it’s been really heavily politicized. Even when scientists are very well-intentioned and not trying to support any side of the narrative, when they do work and release a paper it gets picked up by actors with political agendas.
Whether it’s talking about seroprevalence or estimating the chance that this is even going to come to the United States at all each study gets picked up and placed into this little political box and sort of used as a cudgel to beat the other side with.
So even when the material isn’t being produced as bullshit, it’s being picked up and used in the service of that by overstating its claims, by cherry-picking the information that’s out there and so on. And I think that’s kind of the biggest problem that we’re facing.
One example [of intentional bullshit] might be this insistence for a while on graphing the number of cases on a per-capita basis, so that people could say the US response is so much better than the rest of the world because we have a slower rate of growth per capita. That was basically graphical malfeasance or bullshit. When a wildfire starts spreading, you’re interested in how it’s spreading now, not whether it’s spreading in a 100-acre wood or millions of square miles of national forest.
Is there one big lesson that you think that the media should keep in mind as we communicate science to the public? What mistakes are we making?
I think the media has been adjusting really fast and doing really well. When I’m talking about how to avoid misinformation around this I’m constantly telling people to trust the professional fact-based media. Rather than looking for the latest rumor that’s spreading across Facebook or Twitter so that you can have information up to the hour, recognize that it’s much better to have solidly sourced, well-vetted information from yesterday.
Hyper-partisan media are making a huge mess of this, but that’s on purpose. They’ve got a reason to promote hydroxychloroquine or whatever it is and just run with that. They’re not even trying to be responsible.
But one of the biggest things that people [in the media]could do to improve would be to recognize that scientific studies, especially in a fast-moving situation like this, are provisional. That’s the nature of science. Anything can be corrected. There’s no absolute truth there. Each model, each finding is just adding to a weight of evidence in one direction or another.
A lot of the reporting is focusing on models, and most of us probably don’t have any basic training in how to read them or what kind of credence to put in them. What should we know?
The key thing, and this goes for scientists as well as non-scientists, is that people are not doing a very good job thinking about what the purpose of different models are, how the purposes of different models vary, and then what the scope of their value is. When these models get treated as if they’re oracles, then people both over-rely on them and treat them too seriously – and then turn around and slam them too hard for not being perfect at everything.
Are there mistakes that are made by people in the scientific community when it comes to communicating with the public?
We’re trying to communicate as a scientific community in a new way, where people are posting their data in real time. But we weren’t ready for the degree to which that stuff would be picked up and assigned meaning in this highly politically polarized environment. Work that might be fairly easy for researchers to contextualize in the field can be portrayed as something very, very different in the popular press.
The first Imperial College model in March was predicting 1.1 million to 2.2 million American deaths if the pandemic were not controlled. That’s a really scary, dramatic story, and I still think that it’s not unrealistic. That got promoted by one side of the partisan divide. Then Imperial came back and modeled a completely different scenario, where the disease was actually brought under control and suppressed in the US, and they released a subsequent model that said, ‘If we do this, something like 50,000 deaths will occur.’ That was picked up by the other side and used to try to discredit the Imperial College team entirely by saying, ‘A couple of weeks ago they said a million now they’re saying 50,000; they can’t get anything right.’ And the answer , of course, is that they were modeling two different scenarios.
We’re also not doing enough of deliberately stressing the possible weaknesses of our interpretations. That varies enormously from researcher to researcher and team to team.
It requires a lot of discipline to argue really hard for something but also be scrupulously open about all of the weaknesses in your own argument.
But it’s more important than ever, right? A really good paper will lay out all the most persuasive evidence it can and then in the conclusion section or the discussion section say, ‘OK, here are all the reasons that this could be wrong and here are the weaknesses.’
When you have something that’s so directly policy relevant, and there’s a lot of lives at stake, we’re learning how to find the right balance.
It is a bit of a nightmare to put out data that is truthful, but also be aware that there are bad faith actors at the moment who might pounce on it and use it in a way you didn’t intend.
There’s a spectrum. You have outright bad faith actors – Russian propaganda picking up on things and bots spreading misinformation – and then you have someone like Georgia Governor Brian Kemp who I wouldn’t calla bad faith actor. He’s a misinformed actor.
There’s so much that goes unsaid in science in terms of context and what findings mean that we don’t usually write in papers. If someone does a mathematical forecasting model, you’re usually not going to have a half-page discussion on the limitations of forecasting. We’re used to writing for an audience of 50 people in the world, if we’re lucky, who have backgrounds that are very similar to our own and have a huge set of shared assumptions and shared knowledge. And it works really well when you’re writing on something that only 50 people in the world care about and all of them have comparable training, but it is a real mess when it becomes pressing, and I don’t think any of us have figured out exactly what to do about that because we’re also trying to work quickly and it’s important to get this information out.
One area that has already become contentious and in some ways politicized is the serology surveys, which are supposed to show what percentage of the population has antibodies to the virus. What are some of the big picture contextual caveats and limitations that we should keep in mind as these surveys come out?
The seroprevalence in the US is a political issue, and so the first thing is to recognize that when anyone is reporting on that stuff, there’s a political context to it. It may even be that some of the research is being done with an implicitly political context, depending on who the funders are or what the orientations and biases of some of the researchers.
On the scientific side, I think there’s really two things to think about. The first one is the issue of selection bias. You’re trying to draw a conclusion about one population by sampling from a subset of that population and you want to know how close to random your subset is with respect to the thing you’re trying to measure. The Santa Clara study recruited volunteers off of Facebook. The obvious source of sampling bias there is that people desperately want to get tested. The people that want it are, of course, people that think they’ve had it.
The other big piece is understanding the notion of positive predictive value and the way false positive and false negative error rates influence the estimate. And that depends on the incidence of infection in the population.
If you have a test that has a 3% error rate, and the incidence in the population is below 3%, then most of the positives that you get are going to be false positives. And so you’re not going to get a very tight estimate about how many people have it. This has been a real problem with the Santa Clara study. From my read of the paper, their data is actually consistent with nobody being infected. A New York Citystudy on the other hand showed 21% seropositive, so even if there has a 3% error rate, the majority of those positives have to be true positives.
Now that we’ve all had a crash course in models and serosurveys, what are the other areas of science where it makes sense for the public to start getting educated on the terms of the debate?
One that I think will come along sooner or later is interpreting studies of treatments. We’ve dealt with that a little bit with the hydroxychloroquine business but not in any serious way because the hydroxychloroquine work has been pretty weak and the results have not been so positive.
But there are ongoing tests of a large range of existing drugs. And these studies are actually pretty hard to do. There’s a lot of subtle technical issues: what are you doing for controls? Is there a control arm at all? If not, how do you interpret the data? If there is a control arm, how is it structured? How do you control for the characteristics of the population on whom you’re using the drug or their selection biases in terms of who’s getting the drug?
Unfortunately, given what we’ve already seen with hydroxychloroquine, it’s fairly likely that this will be politicized as well. There’ll be a parallel set of issues that are going to come around with vaccination, but that’s more like a year off.
If you had the ability to arm every person with one tool – a statistical tool or scientific concept – to help them understand and contextualize scientific information as we look to the future of this pandemic, what would it be?
I would like people to understand that there are interactions between the models we make, the science we do and the way that we behave. The models that we make influence the decisions that we take individually and as a society, which then feed back into the models and the models often don’t treat that part explicitly.
Once you put a model out there that then creates changes in behavior that pull you out of the domain that the model was trying to model in the first place. We have to be very attuned to that as we try to use the models for guiding policy.
That’s very interesting, and not what I expected you to say.
What did you expect?
That correlation does not imply causation.
That’s another very good one. Seasonality is a great example there. We’re trying a whole bunch of things at the same time. We’re throwing all kinds of possible solutions at this and lots of things are changing. It’s remarkable to me actually, that so many US states are seeing the epidemic curve decrease. And so there’s a bunch of possibilities there. It could be because people’s behavior is changing. There could be some seasonality there. And there are other possible explanations as well.
But what is really important is that just because the trend that you see is consistent with a story that someone’s selling, there may be many other stories that are also consistent, so inferring causality is dangerous.
SÃO PAULO – Os cartórios brasileiros registraram alta de 43% no número de mortes por causa indeterminada notificadas no País desde o início da pandemia de covid-19 em território brasileiro. Os dados, antecipados pelo Estado, serão divulgados nesta segunda-feira, 27, em novo painel do Portal da Transparência do Registro Civil, mantido pela Associação Nacional dos Registradores de Pessoas Naturais (Arpen-Brasil). Segundo especialistas, o aumento de óbitos sem causa definida pode estar associado a vítimas de coronavírus que morreram sem ter o diagnóstico da doença.
A alta refere-se ao período de 26 de fevereiro, data em que o primeiro caso de infecção por coronavírus foi registrado no Brasil, até 17 de abril – como os cartórios tem até dez dias para repassar os registros para a Central de Informações do Registro Civil (CRC Nacional), a reportagem optou por um recorte até dez dias atrás.
Em 2020, o País teve 1.329 mortes por causa indeterminada no periodo mencionado. Em 2019, 925 óbitos do tipo foram registrados pelos cartórios no mesmo intervalo. De acordo com especialistas, o dado pode ser mais um indício de subnotificação do número de óbitos por coronavírus no País. Com a falta de testes e a alta demanda sobre o sistema de saúde em algumas regiões, doentes podem estar morrendo sem ter uma avaliação médica.
Para Fátima Marinho, professora da Faculdade de Medicina da Universidade Federal de Minas Gerais (UFMG) e integrante do grupo de especialistas que auxiliou a Arpen-Brasil na elaboração do painel, é provável que o aumento de mortes por causa indefinida tenha como uma das razões a morte de pessoas por covid-19 que não tiveram acesso ao sistema de saúde. “Em uma situação de uma doença nova, uma pandemia, a gente espera um aumento de mortes em casa, sem que a pessoa sequer consiga ter atendimento médico. Isso pode estar acontecendo agora”, explica.
Se analisadas as mortes também por faixa etária, o aumento de óbitos por causa indeterminada é maior entre idosos, principal grupo de risco para complicações do coronavírus. O número de mortes sem causa definida entre pessoas com idade a partir de 60 anos passou de 568 em 2019 para 879 em 2020, alta de 54,8%. Já entre indivíduos com menos de 60 anos, a variação foi de 30,5% – subiu de 321 para 419 no mesmo intervalo de tempo.
Fátima diz que outra razão que pode estar impactando na alta de mortes por causas indeterminadas é o provável crescimento de óbitos por outras causas que não estão chegando aos hospitais pela dificuldade de conseguir leitos no meio da pandemia ou pelo eventual medo de pacientes em procurar unidades de saúde e se contaminarem. “Provavelmente teremos um aumento de mortes por infarto, AVC e outros problemas registrados em casa porque as pessoas estão adiando a ida ao pronto-socorro ou tendo que disputar leitos com pacientes com covid-19”, diz ela.
Salto em mortes por Síndrome Respiratória Aguda Grave
O portal da transparência mantido pela Arpen-Brasil também passa a disponibilizar o número de mortes por Síndrome Respiratória Aguda Grave (SRAG), que registrou aumento de 680% entre 26 de fevereiro e 17 de abril de 2019 e o mesmo período de 2020. Os números contemplam casos dessa condição respiratória em que não foi especificado o agente causador da síndrome, que pode ser coronavírus, mas também influenza ou outro vírus respiratório.
De acordo com o portal, o número de mortes do tipo passou de 156 para 1.217 no período citado. A alta nos óbitos por SRAG não especificada registradas em cartórios seriam outro indício de subnotificação. Ela é ainda maior em Estados com muitos casos da doença. No Amazonas, o aumento foi de 1.214%. No Ceará, de 3.828%. Em São Paulo, Estado com o maior número de infectados, o crescimento observado foi de 916%.
O número de mortes suspeitas ou confirmadas por covid-19 registradas nos cartórios também vem se mostrando maior do que as registradas pelo Ministério da Saúde (que considera só os óbitos confirmados por coronavírus). Na tarde desta segunda, por exemplo, os cartórios já registravam 4.839 vítimas com confirmação ou suspeita da doença. Já o Ministério contabilizava 4.543 registros.
Para Luis Carlos Vendramin Júnior, vice-presidente da Arpen-Brasil, a disponibilização dos dados dos cartórios ajudam a entender o avanço da epidemia. “Como temos esses dados com atualização diária, avaliamos que ampliar a transparência e divulgar dados também sobre mortes por SRAG e causas indeterminadas, além das que já vínhamos divulgando, vai auxiliar tanto o poder público quanto a imprensa e a população em geral na análise de números”, destacou.
Omar Rodriguez organizes bodies in the Gerard J. Neufeld funeral home in Elmhurst on April 22. Photo: Spencer Platt/Getty Images
Over the last few weeks, the country has managed to stabilize the spread of the coronavirus sufficiently enough to begin debating when and in what ways to “reopen,” and to normalize, against all moral logic, the horrifying and ongoing death toll — thousands of Americans dying each day, in multiples of 9/11 every week now with the virus seemingly “under control.” The death rate is no longer accelerating, but holding steady, which is apparently the point at which an onrushing terror can begin fading into background noise. Meanwhile, the disease itself appears to be shape-shifting before our eyes.
In an acute column published April 13, the New York Times’ Charlie Warzel listed 48 basic questions that remain unanswered about the coronavirus and what must be done to protect ourselves against it, from how deadly it is to how many people caught it and shrugged it off to how long immunity to the disease lasts after infection (if any time at all). “Despite the relentless, heroic work of doctors and scientists around the world,” he wrote, “there’s so much we don’t know.” The 48 questions he listed, he was careful to point out, did not represent a comprehensive list. And those are just the coronavirus’s “known unknowns.”
In the two weeks since, we’ve gotten some clarifying information on at least a handful of Warzel’s queries. In early trials, more patients taking the Trump-hyped hydroxychloroquinine died than those who didn’t, and the FDA has now issued a statement warning coronavirus patients and their doctors from using the drug. The World Health Organization got so worried about the much-touted antiviral remdesivir, which received a jolt of publicity (and stock appreciation) a few weeks ago on rumors of positive results, the organization leaked an unpublished, preliminary survey showing no benefit to COVID-19 patients. Globally, studies have consistently found exposure levels to the virus in most populations in the low single digits — meaning dozens of times more people have gotten the coronavirus than have been diagnosed with it, though still just a tiny fraction of the number needed to achieve herd immunity. In particular hot spots, the exposure has been significantly more widespread — one survey in New York City found that 21 percent of residents may have COVID-19 antibodies already, making the city not just the deadliest community in the deadliest country in a world during the deadliest pandemic since AIDS, but also the most infected (and, by corollary, the farthest along to herd immunity). A study in Chelsea, Massachusetts, found an even higher and therefore more encouraging figure: 32 percent of those tested were found to have antibodies, which would mean, at least in that area, the disease was only a fraction as severe as it might’ve seemed at first glance, and that the community as a whole could be as much as halfway along to herd immunity. In most of the rest of the country, the picture of exposure we now have is much more dire, with much more infection almost inevitably to come.
But there is one big question that didn’t even make it onto Warzel’s list that has only gotten more mysterious in the weeks since: How is COVID-19 actually killing us?
We are now almost six months into this pandemic, which began in November in Wuhan, with 50,000 Americans dead and 200,000 more around the world. If each of those deaths is a data point, together they represent a quite large body of evidence from which to form a clear picture of the pandemic threat. Early in the epidemic, the coronavirus was seen as a variant of a familiar family of disease, not a mysterious ailment, however infectious and concerning. But while uncertainties at the population level confuse and frustrate public-health officials, unsure when and in what form to shift gears out of lockdowns, the disease has proved just as mercurial at the clinical level, with doctors revising their understanding of COVID-19’s basic pattern and weaponry — indeed often revising that understanding in different directions at once. The clinical shape of the disease, long presumed to be a relatively predictable respiratory infection, is getting less clear by the week. Lately, it seems, by the day. As Carl Zimmer, probably the country’s most respected science journalist, asked virologists in a tweet last week, “is there any other virus out there that is this weird in terms of its range of symptoms?”
You probably have a sense of the range of common symptoms, and a sense that the range isn’t that weird: fever, dry cough, and shortness of breath have been, since the beginning of the outbreak, the familiar, oft-repeated group of tell-tale signs. But while the CDC does list fever as the top symptom of COVID-19, so confidently that for weeks patients were turned away from testing sites if they didn’t have an elevated temperature, according to the Journal of the American Medical Association, as many as 70 percent of patients sick enough to be admitted to New York State’s largest hospital system did not have a fever.
Over the past few months, Boston’s Brigham and Women’s Hospital has been compiling and revising, in real time, treatment guidelines for COVID-19 which have become a trusted clearinghouse of best-practices information for doctors throughout the country. According to those guidelines, as few as 44 percent of coronavirus patients presented with a fever (though, in their meta-analysis, the uncertainty is quite high, with a range of 44 to 94 percent). Cough is more common, according to Brigham and Women’s, with between 68 percent and 83 percent of patients presenting with some cough — though that means as many as three in ten sick enough to be hospitalized won’t be coughing. As for shortness of breath, the Brigham and Women’s estimate runs as low as 11 percent. The high end is only 40 percent, which would still mean that more patients hospitalized for COVID-19 do not have shortness of breath than do. At the low end of that range, shortness of breath would be roughly as common among COVID-19 patients as confusion (9 percent), headache (8 to 14 percent), and nausea and diarrhea (3 to 17 percent). That the ranges are so wide themselves tells you that the disease is presenting in very different ways in different hospitals and different populations of different patients — leading, for instance, some doctors and scientists to theorize the virus might be attacking the immune system like HIV does, with many others finding the disease is triggering something like the opposite response, an overwhelming overreaction of the immune system called a “cytokine storm.”
The most bedeviling confusion has arisen around the relationship of the disease to breathing, lung function, and oxygenation levels in the blood — typically, for a respiratory illness, a quite predictable relationship. But for weeks now, front-line doctors have been expressing confusion that so many coronavirus patients were registering lethally low blood-oxygenation levels while still appearing, by almost any vernacular measure, pretty okay. It’s one reason they’ve begun rethinking the initial clinical focus on ventilators, which are generally recommended when patients oxygenation falls below a certain level, but seemed, after a few weeks, of unclear benefit to COVID-19 patients, who may have done better, doctors began to suggest, on lesser or different forms of oxygen support. For a while, ventilators were seen so much as the essential tool in treating life-threatening coronavirus that shortages (and the president’s unwillingness to invoke the Defense Production Act to manufacture them quickly) became a scandal. But by one measure 88 percent of New York patients put on ventilators, for whom an outcome as known, had died. In China, the figure was 86 percent.
On April 20 in the New York Times, an ER doctor named Richard Levitan who had been volunteering at Bellevue proposed that the phenomenon of seemingly stable patients registering lethally low oxygen levels might be explained by “silent hypoxia” — the air sacs in the lung collapsing, not getting stiff or heavy with fluid, as is the case with the pneumonias doctors had been using as models in their treatment of COVID-19. But whether this explanation is universal, limited to the patients at Bellevue, or somewhere in between is not yet entirely clear. A couple of days later, in a pre-print paper others questioned, scientists reported finding that the ability of the disease to mutate has been “vastly underestimated” — investigating the disease as it appeared in just 11 patients, they said they found 30 mutations. “The most aggressive strains could generate 270 times as much viral load as the weakest type,” the South China Morning-Postreported. “These strains also killed the cells the fastest.”
That same day, the Washington Postreported on another theory gaining traction among American doctors treating the disease — that one key could be the way COVID-19 affects the blood of patients, producing much more clotting. “Autopsies have shown that some people’s lungs are filled with hundreds of microclots,” the Post reported. “Errant blood clots of a larger size can break off and travel to the brain or heart, causing a stroke or a heart attack.”
But the bigger-picture perspective the newspaper offered is perhaps more eye-opening and to the point:
One month ago, as the country went into lockdown to prepare for the first wave of coronavirus cases, many doctors felt confident that they knew what they were dealing with. Based on early reports, covid-19 appeared to be a standard variety respiratory virus, albeit a very contagious and lethal one with no vaccine and no treatment. But they’ve since become increasingly convinced that covid-19 attacks not only the lungs, but also the kidneys, heart, intestines, liver and brain.
That is a dizzying list. But it is not even comprehensive. In a fantastic survey published April 17 (“How does coronavirus kill? Clinicians trace a ferocious rampage through the body, from brain to toes,” by Meredith Wadman, Jennifer Couzin-Frankel, Jocelyn Kaiser, and Catherine Matacic), Science magazine took a thorough, detailed tour of the ever-evolving state of understanding of the disease. “Despite the more than 1,000 papers now spilling into journals and onto preprint servers every week,” Science concluded, “a clear picture is elusive, as the virus acts like no pathogen humanity has ever seen.”
In a single illuminating chart, Science lists the following organs as being vulnerable to COVID-19: brain, eyes, nose, lungs, heart, blood vessels, livers, kidneys, intestines. That is to say, nearly every organ:
And the disparate impacts were significant ones: Heart damage was discovered in 20 percent of patients hospitalized in Wuhan, where 44 percent of those in ICU exhibited arrhythmias; 38 percent of Dutch ICU patients had irregular blood clotting; 27 percent of Wuhan patients had kidney failure, with many more showing signs of kidney damage; half of Chinese patients showed signs of liver damage; and, depending on the study, between 20 percent and 50 percent of patients had diarrhea.
On April 15, the Washington Postreported that, in New York and Wuhan, between 14 and 30 percent of ICU patients had lost kidney function, requiring dialysis. New York hospitals were treating so much kidney failure “they need more personnel who can perform dialysis and have issued an urgent call for volunteers from other parts of the country. They also are running dangerously short of the sterile fluids used to deliver that therapy.” The result, the Post said, was rationed care: patients needing 24-hour support getting considerably less. On Saturday, the paper reported that “[y]oung and middle-aged people, barely sick with COVID-19, are dying from strokes.” Many of the patients described didn’t even know they were sick:
The patient’s chart appeared unremarkable at first glance. He took no medications and had no history of chronic conditions. He had been feeling fine, hanging out at home during the lockdown like the rest of the country, when suddenly, he had trouble talking and moving the right side of his body. Imaging showed a large blockage on the left side of his head. Oxley gasped when he got to the patient’s age and covid-19 status: 44, positive.
The man was among several recent stroke patients in their 30s to 40s who were all infected with the coronavirus. The median age for that type of severe stroke is 74.
But the patient’s age wasn’t the only abnormality of the case:
As Oxley, an interventional neurologist, began the procedure to remove the clot, he observed something he had never seen before. On the monitors, the brain typically shows up as a tangle of black squiggles — “like a can of spaghetti,” he said — that provide a map of blood vessels. A clot shows up as a blank spot. As he used a needlelike device to pull out the clot, he saw new clots forming in real-time around it.
“This is crazy,” he remembers telling his boss.
These strokes, several doctors who spoke to the Post theorized, could explain the high number of patients dying at home — four times the usual rate in New York, many or most of them, perhaps, dying quite suddenly. According to the Brigham and Women’s guidelines, only 53 percent of COVID-19 patients have died from respiratory failure alone.
It’s not unheard of, of course, for a disease to express itself in complicated or hard-to-parse ways, attacking or undermining the functioning of a variety of organs. And it’s common, as researchers and doctors scramble to map the shape of a new disease, for their understanding to evolve quite quickly. But the degree to which doctors and scientists are, still, feeling their way, as though blindfolded, toward a true picture of the disease cautions against any sense that things have stabilized, given that our knowledge of the disease hasn’t even stabilized. Perhaps more importantly, it’s a reminder that the coronavirus pandemic is not just a public-health crisis but a scientific one as well. And that as deep as it may feel we are into the coronavirus, with tens of thousands dead and literally billions in precautionary lockdown, we are still in the very early stages, when each new finding seems as likely to cloud or complicate our understanding of the coronavirus as it is to clarify it. Instead, confidence gives way to uncertainty.
In the space of a few months, we’ve gone from thinking there was no “asymptomatic transmission” to believing it accounts for perhaps half or more of all cases, from thinking the young were invulnerable to thinking they were just somewhat less vulnerable, from believing masks were unnecessary to requiring their use at all times outside the house, from panicking about ventilator shortages to deploying pregnancy massage pillows instead. Six months since patient zero, we still have no drugs proven to even help treat the disease. Almost certainly, we are past the “Rare Cancer Seen in 41 Homosexuals” stage of this pandemic. But how far past?
Blending nationalism and pseudoscience, the “cures” touted by an Indian ministry are raising public health concerns.
When it was announced in late March that Prince Charles, heir to the British throne, was well on his way to recovering from Covid-19, there was some celebration 4,000 miles away in India, a former British colony. But it was not colonial nostalgia that brought on the cheer, so much as the declaration a few days later by an Indian government minister that the Prince of Wales had been cured using Ayurveda — a blend of, among other things, herbal medicine, breathing exercises, and meditation.
At an April 2 press conference, Shripad Naik, India’s minister for alternative medicines, declared that the treatment’s supposed success “validates our age-old practice.” The British government swiftly issued a statement rejecting his claim. “This information is incorrect. The Prince of Wales followed the medical advice of the National Health Service in the U.K. and nothing more,” a spokesperson said the following day.
But this hasn’t deterred Naik’s Ministry of Ayurveda, Yoga & Naturopathy, Unani, Siddha, and Homeopathy — or AYUSH for short — from promoting Indian alternative medicines as treatments for Covid-19. Established in 2014, the goal of AYUSH is to develop and popularize these treatments, many of which have their historical roots in India. Ayurveda, for example, has been practiced in India for thousands of years.
Now, Naik said, the ministry aims to confirm that Prince Charles was cured using a combination of Ayurveda and the pseudoscience known as homeopathy, which has its roots in Germany, so that the treatment can be rolled out to the masses. This is in stark contrast to the position of mainstream medicine, which has not yet confirmed any evidence-based medicine for Covid-19, and is still highly cautious of giving experimental drugs to patients.
And yet for many, the actions of the right-wing Indian government don’t come as a surprise. Aside from the popularity of alternative medicine in India generally, the ruling Bharatiya Janata Party (BJP) is known for supporting Hindutva, a form of nationalism that seeks to transform India from being a secular nation into an openly Hindu one. This partly plays out in the field of health, where alternative therapies that have their roots in India, such as Ayurveda, are considered more “Hindu” or “Indian” than modern medicine. Supporting them becomes an opportunity to push forward this nationalist agenda.
In the early days of the epidemic, AYUSH heavily promoted therapies that lack an evidence base, said Sumaiya Shaikh, a neuroscientist based at the Center for Social and Affective Neuroscience at Linköping University Hospital in Sweden. Shaikh is also editor of science at Alt News, an Indian website that works to expose misinformation.
Examples of treatments pushed by AYUSH included a homeopathic medicine containing diluted arsenic, an Ayurvedic drug developed by the ministry to treat malaria, and dietary changes including drinking warm water, putting sesame oil inside the nose, or consuming holy basil, ginger, cloves, and turmeric. The ministry suggested these interventions could prevent people from developing Covid-19 as well as treat its symptoms.
“There was some amount of criticism to that,” said Shaikh. And so in response, the ministry provided a list of “scientific evidence” to bolster its claims. Aside from the fact that homeopathy has been repeatedly shown to have no biological effects, Shaikh said that when she and her team reviewed the list, the only actual research they could find was one analysis that examined the the same homeopathic treatment in bovines with gastric infections. Despite this, the ministry’s promotion of the therapy increased demand in many Indian states.
This isn’t the first time the ministry has faced criticism for promoting unscientific claims or backing research derived from religious myths and beliefs. One of its repeated focuses has been cow urine, which is believed by many Hindus to have healing properties given the sacred nature of cows in Hinduism. The urine has been touted as a treatment for many illnesses, including diabetes, epilepsy, and AIDS. Naik himself has made several comments in parliament about how cow urine can cure cancer. In reality, its use can be dangerous.
In fact, so widespread is the belief in cow urine that on March 17, an activist working for the BJP in Kolkata organized a “gomutra (cow urine) party” to ward off Covid-19. He believed that drinking the urine would protect them from the disease. Unfortunately, one of the volunteers fell seriously ill after ingesting the urine.
The Ministry of AYUSH’s research portal carries papers on the uses of panchagavya, the five products derived from a cow, of which urine is one, supporting its use as a medical product. However, Ipsita Mohanty, who co-wrote a paper listed there titled “Diversified Uses of Cow Urine,” said in an email that she couldn’t definitively answer whether cow urine fights off Covid-19, as “it has not been proven by independent researchers.”
This reflects how AYUSH researchers and doctors seek validation, explained Shaikh. “If a paper gets published anywhere — doesn’t matter what type of journal it is or how bad the statistics are — they take it as scientific proof,” she said, adding that the alternative medicine community also has a lot of journals of its own. These are regulated and edited by the same people who are published in them, Shaikh said.
Despite being an advocate of cow urine, Mohanty urges doctors to not spread misinformation. “It is misleading to spread the rumor about something so important when more than half of our world is engulfed by Covid-19,” she said. “There is no vaccine nor any treatment for it. At this point, promoting cow urine against Covid-19 can be very fatal, as people might resort to it for treatment as their only hope.”
The Ministry of AYUSH did not respond to requests for comments from Undark.
“Practitioners of such therapies get their clientele from two distinct groups,” said Aniket Sule, a science education researcher and astronomer at the Homi Bhabha Center for Science Education. He is part of a steadily growing rationalist movement in India that is encouraging dialogue and critical thinking to counter misinformation, including within the realm of alternative medicine.
The first group Sule identified is patients from impoverished communities and remote villages, “who don’t have access to doctors prescribing modern medicines.” The other set of clients is the “affluent and educated class in the cities, who have read half-baked internet posts and develop strong skepticism towards modern medicines,” he said.
“Pushing such a narrative to gullible masses is akin to actively spreading misinformation, and senior functionaries of government should take strict action against such baseless propaganda,” he urged.
The ministry has faced some institutional backlash. The Press Council of India, the statutory body responsible for maintaining good media standards, has issued an order asking print media to stop publicity and advertisements of AYUSH-related claims for Covid-19 treatments.
But despite that, the Ministry of AYUSH continues not only to receive political backing but also a large share of the annual health budget. From 2019 to 2020, the Indian government allotted approximately $250 million for study and promotion of alternative medicines, a 15 percent increase from the previous year. According to Shaikh, only the defense ministry saw a larger proportional increase to its budget last year.
Indian scientists fighting disinformation say there is an underlying nationalist agenda to this move. Certain radical groups affiliated with the government have dreams of spreading Hindu values beyond India’s borders to create an “Akhand Bharat,” or “consolidated Hindu nation,” which would include annexing a large part of the Indian subcontinent. One of these is Rashtriya Swayamsevak Sangh, a militant organization that has a long history of promoting Hindutva. Its leader recently said that Ayurveda is part of India’s “soft power” in the South Asian region, said Shaikh.
The Press Council of India, the statutory body responsible for maintaining good media standards, has issued an order asking print media to stop publicity and advertisements of AYUSH-related claims for Covid-19 treatments.
Since coming to power in 2014, India’s current government (BJP) has increasingly backed divisive policies that consolidate the power of the majoritarian Hindu population. “Overall, this government has made virtue out of extreme and thoughtless nationalism. Increased support to all these questionable therapies is a natural byproduct of that,” Sule said, adding there is also a distinct motivation among many people who believe in these claims. “There are people who are so completely blinded by ‘glorious ancient India’ that they willingly walk into any trap if it is presented as ‘this is what our great ancestors did,’” he said.
Sule also thinks that AYUSH exists, in part, to protect commercial interests. There are nearly 800,000 practitioners of alternative medicine in India, he said, and over 650 colleges teaching related courses. The Ayurveda industry alone in India is worth $4.4 billion and is expected to grow by 16 percent in the next five years.
Shaikh, Sule, and others have been critical of the Ministry of AYUSH for years, exposing and unmasking its questionable research and dubious medical advice. “It is very dangerous, especially now. We are the only country that has a parallel ministry for alternative systems,” Shaikh said. “Why not just have the one ministry and then have everything under it? Use whatever herbs you want, but run them through appropriate trials, and if they work then they should be in the mainstream and everybody should benefit from them,” she said.
Shaikh doesn’t call for closing the ministry but insists the way it works needs to change.
“Don’t start with a belief system, start with the hypothesis,” she advised. “Don’t start with the basis that this drug is going to work. Start with realizing that ‘we don’t know and we want to find out.’ That is unbiased research.”
Many experts say that statements like Naik’s are false and dangerous, particularly now that the country is struggling to control the spread of the novel coronavirus, SARS-CoV-2, among its 1.35 billion people. With a lack of testing and a shortage of physicians, many experts feel the Indian government is failing its people by directing attention and resources to unsubstantiated and unscientific practices — especially when these practices themselves can be harmful.
WUHAN, China (Reuters) – Dressed in a hazmat suit, two masks and a face shield, Du Mingjun knocked on the mahogany door of a flat in a suburban district of Wuhan on a recent morning.
FILE PHOTO: Medical personnel in protective suits wave hands to a patient who is discharged from the Leishenshan Hospital after recovering from the novel coronavirus, in Wuhan, the epicentre of the novel coronavirus outbreak, in Hubei province, China March 1, 2020. China Daily via REUTERS
A man wearing a single mask opened the door a crack and, after Du introduced herself as a psychological counsellor, burst into tears.
“I really can’t take it anymore,” he said. Diagnosed with the novel coronavirus in early February, the man, who appeared to be in his 50s, had been treated at two hospitals before being transferred to a quarantine centre set up in a cluster of apartment blocks in an industrial part of Wuhan.
Why, he asked, did tests say he still had the virus more than two months after he first contracted it?
The answer to that question is a mystery baffling doctors on the frontline of China’s battle against COVID-19, even as it has successfully slowed the spread of the coronavirus across the country.
Chinese doctors in Wuhan, where the virus first emerged in December, say a growing number of cases in which people recover from the virus, but continue to test positive without showing symptoms, is one of their biggest challenges as the country moves into a new phase of its containment battle.
Those patients all tested negative for the virus at some point after recovering, but then tested positive again, some up to 70 days later, the doctors said. Many have done so over 50-60 days.
The prospect of people remaining positive for the virus, and therefore potentially infectious, is of international concern, as many countries seek to end lockdowns and resume economic activity as the spread of the virus slows. Currently, the globally recommended isolation period after exposure is 14 days.
So far, there have been no confirmations of newly positive patients infecting others, according to Chinese health officials.
China has not published precise figures for how many patients fall into this category. But disclosures by Chinese hospitals to Reuters, as well as in other media reports, indicate there are at least dozens of such cases.
In South Korea, about 1,000 people have been testing positive for four weeks or more. In Italy, the first European country ravaged by the pandemic, health officials noticed that coronavirus patients could test positive for the virus for about a month.
As there is limited knowledge available on how infectious these patients are, doctors in Wuhan are keeping them isolated for longer.
Zhang Dingyu, president of Jinyintan Hospital, where the most serious coronavirus cases were treated, said health officials recognised the isolations may be excessive, especially if patients proved not to be infectious. But, for now, it was better to do so to protect the public, he said.
He described the issue as one of the most pressing facing the hospital and said counsellors like Du are being brought in to help ease the emotional strain.
“When patients have this pressure, it also weighs on society,” he said.
DOZENS OF CASES
The plight of Wuhan’s long-term patients underlines how much remains unknown about COVID-19 and why it appears to affect different people in numerous ways, Chinese doctors say. So far global infections have hit 2.5 million with over 171,000 deaths.
As of April 21, 93% of 82,788 people with the virus in China had recovered and been discharged, official figures show.
Yuan Yufeng, a vice president at Zhongnan Hospital in Wuhan, told Reuters he was aware of a case in which the patient had positive retests after first being diagnosed with the virus about 70 days earlier.
“We did not see anything like this during SARS,” he said, referring to the 2003 Severe Acute Respiratory Syndrome outbreak that infected 8,098 people globally, mostly in China.
Patients in China are discharged after two negative nucleic acid tests, taken at least 24 hours apart, and if they no longer show symptoms. Some doctors want this requirement to be raised to three tests or more.
China’s National Health Commission directed Reuters to comments made at a briefing Tuesday when asked for comment about how this category of patients was being handled.
Wang Guiqiang, director of the infectious disease department of Peking University First Hospital, said at the briefing that the majority of such patients were not showing symptoms and very few had seen their conditions worsen.
“The new coronavirus is a new type of virus,” said Guo Yanhong, a National Health Commission official. “For this disease, the unknowns are still greater than the knowns.”
REMNANTS AND REACTIVATION
Experts and doctors struggle to explain why the virus behaves so differently in these people.
Some suggest that patients retesting as positive after previously testing negative were somehow reinfected with the virus. This would undermine hopes that people catching COVID-19 would produce antibodies that would prevent them from getting sick again from the virus.
Zhao Yan, a doctor of emergency medicine at Wuhan’s Zhongnan Hospital, said he was sceptical about the possibility of reinfection based on cases at his facility, although he did not have hard evidence.
“They’re closely monitored in the hospital and are aware of the risks, so they stay in quarantine. So I’m sure they were not reinfected.”
Jeong Eun-kyeong, director of the Korea Centers for Disease Control and Prevention, has said the virus may have been “reactivated” in 91 South Korean patients who tested positive after having been thought to be cleared of it.
Other South Korean and Chinese experts have said that remnants of the virus could have stayed in patients’ systems but not be infectious or dangerous to the host or others.
Few details have been disclosed about these patients, such as if they have underlying health conditions.
Paul Hunter, a professor at the University of East Anglia’s Norwich School of Medicine, said an unusually slow shedding of other viruses such as norovirus or influenza had been previously seen in patients with weakened immune systems.
In 2015, South Korean authorities disclosed that they had a Middle East Respiratory Syndrome patient stricken with lymphoma who showed signs of the virus for 116 days. They said his impaired immune system kept his body from ridding itself of the virus. The lymphoma eventually caused his death.
FILE PHOTO: A volunteer walks inside a convention center that was used as a makeshift hospital to treat patients with the coronavirus disease (COVID-19), in Wuhan, Hubei province, China April 9, 2020. REUTERS/Aly Song
Yuan said that even if patients develop antibodies, it did not guarantee they would become virus-free.
He said that some patients had high levels of antibodies, and still tested positive to nucleic acid tests.
“It means that the two sides are still fighting,” he said.
As could be seen in Wuhan, the virus can also inflict a heavy mental toll on those caught in a seemingly endless cycle of positive tests.
Du, who set up a therapy hotline when Wuhan’s outbreak first began, allowed Reuters in early April to join her on a visit to the suburban quarantine centre on the condition that none of the patients be identified.
One man rattled off the names of three Wuhan hospitals he had stayed at before being moved to a flat in the centre. He had taken over 10 tests since the third week of February, he said, on occasions testing negative but mostly positive.
“I feel fine and have no symptoms, but they check and it’s positive, check and it’s positive,” he said. “What is with this virus?”
Patients need to stay at the centre for at least 28 days and obtain two negative results before being allowed to leave. Patients are isolated in individual rooms they said were paid for by the government.
The most concerning case facing Du during the visit was the man behind the mahogany door; he had told medical workers the night before that he wanted to kill himself.
“I wasn’t thinking clearly,” he told Du, explaining how he had already taken numerous CT scans and nucleic acid tests, some of which tested negative, at different hospitals. He worried that he had been reinfected as he cycled through various hospitals.
His grandson missed him after being gone for so long, he said, and he worried his condition meant he would never be able to see him again.
He broke into another round of sobs. “Why is this happening to me?”
Reporting by Brenda Goh; Additional reporting by Jack Kim in Seoul, Elvira Pollina in Milan, Belen Carreno in Madrid, and Shanghai newsroom; Editing by Philip McClellan
Imagine that Mr. Jones was intubated yesterday in an NYC hospital. He is not imminently dying, though his chances of surviving Covid-19 are uncertain. Mrs. Smith, another Covid-19 case, now requires intubation in the same hospital’s emergency room. She is twenty years younger than Jones, and without his diabetes and hypertension, so her prognosis for recovery is better. But yesterday Jones took the last ventilator in the ICU. If we leave Mr. Jones on the vent, Mrs. Smith will die. If we take Jones off the vent to give it to Smith, then he will die.
If we choose the younger, healthier Mrs. Smith over the older, sicker Mr. Jones, this might appear to be age discrimination. On the other hand, the coronavirus itself engages in age discrimination, killing those over 70 at a much higher rate — so age itself appears to be a medically relevant prognostic factor in many cases.
Most physicians are not trained as wartime medics. We have never before faced these battlefield triage decisions. And with the coronavirus pandemic, there are additional ethical complications. That NYC hospital is also running out of N95 masks and proper gowns to protect staff from infection. Health care workers certainly have a duty to care for the sick. Just as firefighters run into burning buildings while others run away, so also we treat contagious patients while others are socially distancing.
But just as firefighters never signed up to run into burning buildings in their boxer shorts, so also doctors and nurses did not sign up to treat infectious diseases without basic personal protective equipment — gowns, gloves, and masks that cost pennies apiece yet somehow are in short supply. When this PPE is gone, and doctors lack even the most basic barriers against infection, should the 70-year-old physician have to stay in the game? What about the 28-year-old pregnant medical resident who has an elderly immunocompromised grandfather living at home?
Suppose during this crisis we stretch the duty to treat contagious patients to heroic proportions. This is part of the physician’s job, so it is all hands on deck. After a few weeks of this strategy, and before more N95 masks arrive, half of the emergency and ICU physicians in this NYC hospital are home sick with the cursed virus, and one of the hospital’s docs is sick enough to need — guess what? — a ventilator. So this doctor returns to her hospital as a patient.
Should we then pull Mrs. Jones off the ventilator and offer it to the infected physician, who after all acquired Covid-19 while on the front lines heroically risking her own health to care for patients? If we are not convinced by the argument from reciprocity (that she deserves some reward for these efforts), what about the “multiplier effect”? If our central ethical principle under crisis conditions is to save as many lives as possible, it seems plausible that saving this ICU physician — if she recovers and returns to the fray — could help save the lives of more patients. Doctors are in short supply and cannot be easily replaced.
Okay, fine — perhaps we can prioritize doctors, all other things being equal in terms of prognosis. But many other workers are also critical to the pandemic response. Perhaps we can “replace” food service workers and janitors — as distasteful as it is to put it in those terms and think of our fellow human beings in that way — but what about the lead scientist on a project to develop a coronavirus vaccine? Or the police chief of New York? Or any police officer or firefighter, for that matter? What about a priority nudge for pregnant patients on the basis of this same multiplier effect? How should we draw the line around this category of “critical workers” or others who can get a bump up the triage list?
Draw the line too broadly, encompassing anyone still working during the crisis, and such priority quickly becomes meaningless. Draw it too narrowly and you exclude others who are also essential. In any case, if we consider some to be indispensable in this hour, does this not imply that others — the artists and poets, the homeless and unemployed — are dispensable? How will such practices shape our attitudes and impact social solidarity once the virus is gone and the dust has settled?
Suppose we attempt to resolve these puzzles by sticking only to objective clinical criteria: no special priority for anyone, no triage categories that are not directly related to prognosis. We do our best to predict which patients will have the best short-term survival outcomes, give them first priority on scarce resources like ventilators, and save as many people as possible. This seems sensible enough, until we realize that those Covid-19 patients with the best prognosis are typically the ones without medical conditions like diabetes, hypertension, and cardiac disease. But these people are often healthier because they eat healthy food (which is more expensive than McDonald’s), work out at fancy gyms (also expensive), and have access to good medical care (very expensive).
So a triage system that appears at first glance to be fair and medically objective turns out to have the potential for exacerbating social inequalities. The populations that were most vulnerable before a disaster are likely to be among the most vulnerable during a disaster. On the other hand, our mandate is to save as many lives as possible, not to right all wrongs. If devising a medically fair pandemic triage system is frightfully hard, devising a socially fair system seems impossible.
For the past several weeks, these and a thousand other bewildering questions have been keeping my colleagues and me awake at night. After working on these issues round the clock with colleagues at my hospital who specialize in ethics, critical care, anesthesiology, emergency medicine, and nursing, I recently joined a task force to devise a pandemic triage protocol for all hospitals in the University of California system. These are some of the most remarkable people I know, and most have skin in the game as physicians on the front lines.
UC hospitals are well prepared for a large coronavirus surge, but many of California’s smaller private and community hospitals may not be so fortunate. These times call for the sharing of resources between hospitals, for transfers of care, for institutional solidarity. Our hospitals’ resources belong not to us, but to the citizens of California, and even to those beyond our state borders.
We are not starting from scratch or reinventing the wheel in our deliberations. Many thoughtful ethicists and dedicated clinicians have examined these questions in the bioethics research literature. And several states have published guidelines on these thorny questions, often with input from citizens. Yet most of this background work was done when these questions were hypothetical, while the guidelines we are producing now may soon be deployed on the ground.
In the few moments when we slow down, we occasionally think about the opportunistic lawyers and prosecutors who will later go after doctors no matter what choices we make. This is not to mention the Monday morning quarterbacks who will second-guess these choices with the benefit of hindsight, limitless time, and much more retrospective data. Well, fine — let armies of graduate students earn their Ph.D.’s in the coming years by telling us what we could have done better.
Honestly, most of the time we just worry about our patients. We picture the droves of sick people, barely able to breathe, who will arrive any day now at our hospital doors in ever expanding numbers. We wonder how we will explain our decision to an anguished daughter when we have to look her in the eye and say, “We are sorry, your father will not be placed on a ventilator but will be transitioned to comfort care only.” How will we explain this when a month ago he would have received treatment without question, and might have recovered?
None of this makes sense and none of us thought we would ever be in this position. Yet here we are.
We have deliberated about duty, justice, equality, fairness, transparency. These principles can never be abandoned even in a crisis. Yet something lingers always in the background of our efforts. There is an inescapably tragic undercurrent to all of this, however upright our intentions. This one unsettling fact always remains to haunt us: If hospitals exceed their surge capacity, patients who otherwise would have lived will die. Lives will be lost simply because we lacked the resources to offer everyone the basics of modern medicine.
T. S. Eliot saw the limits of our ability to rectify all wrongs and balance the scales of justice when he wrote, “For us, there is only the trying. The rest is not our business.” My colleagues and I, like so many others in these strange times, are trying our best. But controlling and managing this pandemic is beyond our abilities, indeed, beyond anyone’s abilities. In the absence of a God’s-eye view, in the absence of unlimited resources, in the absence of a crystal ball that can perfectly prognosticate outcomes, physicians are left to humbly do whatever we can — even as we know that this will not be enough. For us there is only the trying. The rest is marked by tragedy.
Aaron Kheriaty, M.D., is an associate professor of psychiatry and human behavior, and director of the Medical Ethics Program, at the University of California Irvine School of Medicine.
Aaron Kheriaty, “The Impossible Ethics of Pandemic Triage,” TheNewAtlantis.com, April 3, 2020.
Hoje eu vou dar uma de filósofo chato e preciosista. Tornou-se um lugar-comum afirmar que Bolsonaro age contra a ciência e que suas atitudes diante da pandemia de Covid -19 são absurdas. Concordo que são absurdas, mas receio que não seja tão simples carimbá-las como anticientíficas.
Não me entendam mal, sou fã da ciência. É a ela que devemos quase todos os desenvolvimentos que tornaram a existência humana menos miserável nos últimos séculos. Mas, se quisermos usar os conceitos com algum rigor, a ciência nunca nos diz como devemos atuar.
Quem chamou a atenção para o problema foi David Hume (1711-1776). Para o filósofo, existe uma diferença lógica fundamental entre proposições descritivas, que são as que a ciência nos dá, e proposições prescritivas ou normativas, que são as que se traduzem em decisões de como agir. Nós nunca podemos extrair as segundas diretamente das primeiras. Esse passo necessariamente envolve valores, que não são do domínio da ciência, mas da ética.
Isso significa que a ciência só vai até certo ponto. Ela nos esclarece sobre o comportamento de vírus novos em populações suscetíveis, alerta para a força avassaladora da curva exponencial e vai nos municiando com os parâmetros epidemiológicos do Sars-Cov-2, sobre os quais ainda paira muita incerteza. O que fazemos com essas informações, porém, já não é da alçada da ciência.
Muitas vezes, os cenários traçados pelos especialistas são tão desequilibrados que não deixam margem a dúvida. A escolha sobre o que fazer se torna simples aplicação do bom senso. É o caso da adoção do isolamento social nesta primeira fase da epidemia. Em outras tantas, porém, sobrepõem-se camadas adicionais de complexidade, que precisamos sopesar à luz de valores.
O ponto central é que nossas decisões devem ser informadas pela ciência, mas são inapelavelmente determinadas pela ética —ou pela falta dela.
“O hospital em que eu trabalho, em Paris, está cheio de pacientes infectados pelo coronavírus. Vai se tornar uma referência para a doença. Só hoje eu internei 10 (cinco deles com menos de 50 anos).
Esta semana e na próxima estaremos no pico da infecção. O governo francês está pagando hotéis próximos aos hospitais para que os médicos e demais trabalhadores da saúde não contaminem suas famílias. Eu estou num hotel confortável, a três minutos de carro do hospital.
Os restaurantes da região têm enviado refeições de graça, no almoço e no jantar, para toda a equipe de plantão. Comemos por turnos, juntos: médicos, enfermeiros e soignants – técnicos, maqueiros, secretárias e seguranças.
Aqui na França, muita gente vai morrer. Já estamos enviando pacientes para a Suíça, Alemanha e Luxemburgo, pois faltam leitos de UTI. No nosso hospital há muitos jovens infectados.
Todo mundo aqui está trabalhando a todo vapor. Foram canceladas todas as férias.
Até o fim da semana teremos 400 pacientes POR DIA intubados na Île-de-France (a província onde fica Paris). É muita gente! Nosso hospital tem 120 pacientes com Covid-19. A previsão é que, daqui a 15 dias, os 692 leitos sejam ocupados por pacientes infectados pelo novo coronavírus.
Todos os outros casos (infartos, AVCs, fraturas etc) são encaminhados a clínicas privadas. Cidade vazia. Polícia e exército nas ruas, multando quem não tem permissão de trafegar. Peguei a minha autorização hoje no hospital.
Mais um dia de confinamento em Île-de-France. Talvez o dia mais difícil de todos na minha vida como médico.
No texto anterior eu expliquei que a previsão era que se esgotassem todos os respiradores da província até o fim dessa semana, com uma previsão de 400 pacientes por dia.
Hoje praticamente todos os respiradores foram tomados. Em nosso hospital, por volta das 15h30, já não tínhamos como ventilar pacientes que precisavam ser intubados. Conclusão: desabou um desespero em nossas cabeças porque sabíamos que teríamos que escolher a quem salvar e a quem deixar. E foi isso o que automaticamente fizemos. Fui julgado por um grande amigo, de fora da área da saúde, quando lhe contei isso. Mas era isso ou deixar a peteca cair e não salvar ninguém! Ou tomar a decisão errada de salvar quem não teria chance.
Como na Itália (e acredito que na Espanha também), somos obrigados a decidir. O regulador do plantão telefonou para o que chamamos de Proteção Civil e o exército se encarregará de distribuir tendas com respiradores em volta dos hospitais estratégicos localizados ao redor de Paris. Medida de medicina de guerra (e foi este mesmo o termo utilizado aqui). Isso já acontece na Alsácia (leste da França, fronteira com a Alemanha).
Vi colegas com lágrimas nos olhos. Minha chefe ligava de hora em hora para saber o fluxo de pacientes no Pronto-Socorro. Sim, aqui, geralmente, a chefia é mais que um posto. E a chefe se mostrou uma verdadeira líder, compadecendo-se conosco pela situação.
Os mais graves eram encaminhados a unidades de internação Covid-19 para morrer com dignidade. E a cada 15 minutos, em média, recebíamos ligações da enfermagem dessas unidades confirmando que tal ou tal paciente não deveria ser reanimado. Todos eles com máscara facial de oxigênio a 15L/min e dessaturando.
A conduta era sedar e oferecer conforto e dignidade. Fomos tomados por uma sensação de impotência frente a uma doença nova. Esta é a minha primeira pandemia (e de quase todos aqui). Os rostos dos que atendemos à tarde passam por nossos pensamentos. Vimos, um por um, eles descansarem.
Sinto um misto de alegria por participar de um salvamento coordenado e, ao mesmo tempo, uma tristeza imensa por saber que, em muitos casos, estávamos e ainda estamos perdendo a batalha para esse vírus.
Às 20h se ouve o barulho de aplausos nas janelas. Mas só quem estava no front sabia o que estava acontecendo. As mortes se seguiam. O telefone não parava de tocar. A desesperança e as lágrimas eram visíveis nos olhos de todos. Só quem não participava eram os colegas já contaminados pelo vírus, pois estavam fora de combate. Sim, tenho colegas em casa esperando se recuperar pra voltar. Ou não.
No meio do massacre, a solidariedade era sentida como um mexer numa ferida aberta. A realidade sangrava aos nossos olhos. Os pediatras suspenderam o atendimento, uma vez que as crianças têm sido, quase na sua totalidade, poupadas da infecção. E esses pediatras se dispuseram a gerenciar as UTIs recém-criadas em várias unidades no hospital.
Parei no meio do dia, por alguns segundos, para mandar mensagens a familiares e pessoas mais próximas. Tanto pra desabafar como para prevenir de que o pior está por vir.
Os restaurantes continuam a mandar comida de graça para que não percamos tempo em escolher e telefonar. Não falta comida, nem máscaras N-95 (aqui chamadas de Fpp2), nem oxigênio. Nem falta vontade de exercer nossa sagrada vocação de salvar vidas. Mas o avanço da doença está mais rápido que a nossa capacidade de responder à altura.
Nunca me senti tão médico quanto hoje. E também mais ser humano. A experiência nos deixa saber, numa situação dessas, quem vai partir e quem vai lutar por três semanas (esse tem sido o tempo médio) intubado, pronado, sob diálise, para ressuscitar e enfrentar um longo caminho de fisioterapia e reabilitação até uma vida normal.
Agora as pessoas pararam de chegar (são exatamente 04h23). Meu colega, chefe de plantão como eu, foi descansar por volta das 2h30. Daqui a pouco é minha vez. Mas eu disse aos residentes que não consigo descansar. Eles também não. A realidade da medicina já é dura pra quem cai no ritmo de trabalho logo depois da faculdade. Nesse clima de guerra então… Vejo seus olhos assustados e desejo que não tivesse sido assim… Estamos no pico da infecção nesta semana e na próxima. Terei plantões dia sim, dia não – assim como muitos colegas por aqui. É a vida.
Às 10 da manhã a vida recomeça. Inicia com o que chamamos de Reunião Covid-19. Minha chefe reúne todo o pessoal do PS e nos posiciona sobre as últimas notícias, na França e no mundo, quanto à pandemia. Tomamos decisões, discutimos protocolos… e a guerra continua.
Uma enfermeira liga perguntando se pode quebrar o protocolo e deixar uma família entrar no quarto para se despedir do familiar (um pai, marido, avô). Não autorizo. Pela proteção de todos. Desligo o telefone. Lágrimas caem pelo meu rosto. Vou deitar e agradeço a Deus por estar vivo.
Recado aos brasileiros
Vocês, brasileiros, especialmente idosos, terão de ficar em casa por pelo menos dois meses, se quiserem viver. É que o pico aí no Brasil será daqui a um mês e o vírus é mais ativo em temperaturas baixas. Na minha opinião, isso vai se arrastar por aí se não forem respeitadas as medidas de confinamento.
Pesquisador idealizou projeto após uma parente se curar de uma picada de cobra com tratamento que uniu saber científico e indígena.
Por Ive Rylo, G1 AM
06/06/2017 17h23 Atualizado 06/06/2017 22h25
Indígena Manoel Lima assumir a função de “Grande Kumu”, no Amazonas (Foto: Ive Rylo/G1 AM)
A sabedoria herdada de seus avós a longo de 85 anos fez o indígena Manoel Lima assumir a função de “Grande Kumu”, pajé do povo Tuyuka, no Amazonas. Ele é um dos indígenas que, junto com um dos membros do Colegiado Indígena, do Programa de Pós-graduação em Antropologia Social da Universidade Federal do Amazonas (Ufam), criaram o Bahserikowi´i”, ou Centro de Medicina Indígena da Amazônia. O espaço abre as portas para o público em Manaus nesta terça-feira (6). O local não conta com apoio ou interferência das secretarias de saúde do governo e prefeitura.
“Não é para abandonar a indicação dos médicos [tradicionais] mas para agregar”, disse o antropólogo João Paulo Tukano que idealizou o projeto após uma parente se curar de uma picada de cobra com um tratamento que uniu saber científico e indígena.
De acordo com o idealizador do centro, o espaço busca aliar tratamento milenares utilizados nas aldeias para ajudar a pessoas doentes, indígenas ou não, sem esquecer da medicina tradicional.
“Aqui é mais uma opção de tratamento de saúde, baseado em técnica e tecnologias indígenas usadas de geração em geração”, disse Tukano.
Nesta terça-feira, o kumu Tuyuka começa a oferecer serviços. Além dele, pajés das etnias Tikuna, Satere Mawé, Baniwa, Apurinã estarão disponíveis. No local, os tratamentos são feitos de duas formas, iniciando pelo Bahsesé – uma espécie de benzimento – seguido da indicação dos medicamentos.
“O Bahsesé não é ficar rezando. O Kumu aciona princípios curativos contidos nos vegetais e nos animais. É nessa hora, quando ele fica falando, que ele invoca os princípios dentro de um elemento para ver o que pode passar para a pessoa para curar”, disse
O prédio foi cedido pela Coordenação das Organizações Indígenas da Amazônia Brasileira (Coiab). A manutenção do local é feita pelos próprios indígenas e por amigos. A venda de artesanato e de medicamentos caseiros serão feitas no local para auxiliar na manutenção do Centro. Os atendimentos serão feitos de segunda a sexta-feira das 9h as 13h, na rua Bernardo Ramos, 97, Centro de Manaus. O valor de cada atendimento é R$ 10.
Para ser um grande kumu da aldeia, Manoel Lima contou que foi treinado com os avós desde muito cedo, segundo conta.
“Aprendi com os meus avós, quando tinha seis anos de idade. Desde cedo fui treinado. Nós ficávamos 4 meses longe da aldeia, dentro do mato, onde não tem barulho para se dedicar só ao aprendizado da cura. Treinamos para ser grande Kumu”, disse.
Os Kumus vivem em São Gabriel da Cachoeira, nas comunidades de Taraque, Iauaritê e Paricachoeirinha. Por conta da dificuldade de acesso às aldeias e à falta de maiores investimentos na saúde, os indígenas reclamam que quase não têm acesso aos tratamentos da medicina “branca tradicional”. Por isso, as técnicas de cura herdada dos ancestrais ainda hoje são importantes e passadas de pai para filho dentro das aldeias.
Produtos feitos a base de ervas são vendidos no local, em Manaus (Foto: Iver Rylo/G1 AM)
“Com essa novidade, eu estou muito feliz, é uma iniciativa inédita. Eu já oferecia os tratamentos em casa há muito tempo, não era divulgado e agora é uma coisa grande”, disse o kumu.
Ele garante que existem curas para todos os tipos de enfermidades, inclusive para o que os médicos estão chamando de “mal do século”: a ansiedade e depressão.
“Tratamos desde doenças da cabeça até problemas no útero e menstruação desregulada”, garantiu.
A necessidade de agregar e respeitar variadas formas de tratamentos e saberes, dando visibilidade ao conhecimento indígena foi despertada em João Paulo há sete anos, quando a sobrinha dele quase teve a perna amputada.
“O médico decidiu amputar a perna dela. Meu pai disse que não precisava e poderíamos fazer [o tratamento] em conjunto, os médicos e nós indígenas. O médico não aceitou e disse ‘o senhor não estudou nenhum dia, eu estudei 8 anos’. Fiquei muito abatido, triste e nervoso. Pensei melhor e esta foi uma motivação para eu estudar e tratar ele de igual para igual. E caminhei mais para antropologia”, disse João Paulo.
O caso repercutiu, foi para a justiça, o governo entrou em cena e uma nova equipe de médicos foi formada no Hospital Universitário Getúlio Vargas. À época, No dia 15 de janeiro, Ministério Público Federal chegou a recomendar a um dos hospitais onde a menino foi levada que promovesse a articulação dos conhecimentos da medicina comum com o conhecimento e as práticas tradicionais de saúde dos índios tukano.
“Com a outra equipe pudemos dialogar. O médico quis ouvir meu pai e meu pai falou o que gostaria de fazer e eles respeitaram. Primeiro sugerimos tratamento com plantas, o médico disse que não aconselhava e listou os motivos, depois sugerimos com água mineral e foi acordado num diálogo”, disse.
O tratamento dos médicos em parceira com os pajés Tukano deu certo. A menina não teve a perna amputada e hoje, com 19 anos, tem muita história para contar. “Temos vários casos, meus parentes sofrem. Esse veio à tona porque eu briguei”, disse o antropólogo.
Além o desconhecimento da medicina tradicional aos tratamentos indígenas, a dificuldade dos povos indígenas em conseguir atendimento de saúde na capital também motivou a criação do centro.
“Um dos nossos objetivos é disponibilizar o acesso a tratamento para indígenas que estão em Manaus, porque muito reclamam da dificuldade de chegar as unidades de saúde. É muito comum acontecer do indígena não conseguir tratamento”, lamentou o antropólogo.
Centro fica em uma casa antiga no Centro de Manaus (Foto: Ive Rylo/G1 AM)
Patients less likely to be fobbed off these days with a vague promise they will get better
Tue, Oct 25, 2016, 06:00
“Ireland has a rich ethno-medical knowledge and a history of traditional healing,” says Helen Sheridan, professor of pharmacology at Trinity College.
GPs in Ireland used to give people a bottle of medicine. It was pink or it was blue, and if one didn’t work you tried the other one. Then, as now, most ailments got better with or without medication.
Many people in Ireland, until at least the mid 20th century, believed that their health and wellbeing, as well as that of their animals, were routinely threatened by envious and ill-intentioned neighbours, witches and fairies.
Biddy Early, the famous wise woman of Clare who is said to have died in 1874, reputedly had a magical power to cure illnesses and ailments.
Stories collected by Lady Gregory say Biddy Early had a magic bottle – in the same vein as a crystal ball – which she used to communicate with the fairies and to heal people. People came to her and told them her problems. She listened.
Along with another healer, Moll Anthony of Kildare – who was such an outcast the priest is said to refused her a Christian burial – both of these women gave out bottles containing some kind of unspecified liquid which people were told to drink. Exactly what was in these bottles, nobody is sure.
Today, the work of herbalists is subject to far more scrutiny, and their patients are less likely to be fobbed off with a vague promise they will get better. Now, they want to know what’s in the bottle.
“Ireland has a rich ethno-medical knowledge and a history of traditional healing, but it is not as culturally embedded as in other countries like France, Germany and Austria,” says Helen Sheridan, professor of pharmacology at Trinity College.
Dr Ronnie Moore, a lecturer in sociology and a lecturer in public health medicine and epidemiology at UCD, is a critic of the power of modern biomedicine and takes a different perspective.
“The herbs or minerals are all props: this is about magic and to belief systems,” he said.
“Magic?” I ask incredulously. “That’s a loaded word.”
“I like to use the word because that is exactly what is at play here,” he says. “Talk of placebo and nocebo if you want, but you’re buying into medical discourse. I introduce my students to placebo by calling it witchcraft, because it does the same thing and has the same functions.”
What’s so wrong about medical discourse? I ask. Hasn’t it greatly expanded the human lifespan, saved hundreds of millions of lives and led to massive improvements in our quality of life?
“Biomedicine tends to see the body as a machine, but to use that approach ignores psychosocial responses – of which there are many – to healing,” says Moore.
“Which has done more harm: herbs or biomedicine? [The disgraced obstetrician] Michael Neary needlessly removed 129 women’s wombs; the drug Thalidomide led to birth defects; and people have died on drug trials.”
When Moore started to write a book on the topic, he realised that his ideas would be controversial and decided that he needed to work with other academics.
But there’s increasing evidence that this “magic”, to use Moore’s term, might actually work, and it seems to be due to one of the most misunderstood concepts in modern healthcare: the placebo effect.
Helen Sheridan, associate professor at the School of Pharmacy and Pharmaceutical Sciences in Trinity College Dublin and an advisor to the subcommitte on herbal medicines with the Health Products Regulatory Authority, says placebo applies to people when they may be some element of the immune system brought into play, that is controlled by the mind.
In her recent book Cure, the author Jo Marchant lays bare a catalogue of studies showing that the placebo effect is deeply complex and so much more than just a curious trick of the mind where we believe we are better.
Marchant tells of Ted Kaputchuk, who trained and worked as a traditional Chinese herbalist and acupuncturist for many years before becoming professor of medicine and professor of global health and social medicine at Harvard Medical School. While practicing as a herbalist, he watched people visibly improve before they had even left his office, but he became uncomfortable with the idea that it was the herbs at work.
In a more recent experiment, Kaputchuk teamed up with his colleague, Dr Anthony Lembo, a gastroenterologist. In a trial of 80 patients with long-term irritable bowel syndrome, half were given a placebo and told it was a placebo but it might help with self-healing, and they still did better than those who got no treatment. A study of 20 women with depression showed up similar results, while a study on migraine patients found that those who knew they were taking a placebo still felt 30 per cent less pain than those receiving no treatment.
Evidence is mounting for the placebo effect. The mere belief we are being looked after, with medicine and care from nurses or loved ones, can help to ease symptoms, boost the immune system and even prevent us from getting sick in the first place.
Studies conducted by Jon Levine, a neuroscientist at the University of California in Los Angeles, have shown that our brains can release endorphins – “the happy drug” but also a natural painkiller – which is part of the opiate family of chemicals that includes heroin and morphine – when we take placebo. Our mind doesn’t just influence our health, it is inextricably linked with it.
But Marchant also shows that the placebo effect – or call it “a belief in the infinite healing power of the universe” over modern medicine, or whatever else you want to – won’t cure many illnesses, including diabetes, asthma and cancer. Nor will it lower your blood pressure. So it’s not the panacea either.
Herbalists have tended to emphasise the importance of good digestion and gut health, exposing themselves to the claim that they’re similar to reflexologists who say that different parts of the hands or feet correspond to different parts of the body and that ailments can be cured by stimulating them.
Unlike reflexologists, however, there’s at least some solid evidence to support them.
Earlier this year, researchers at University College Cork found that the microbes in our gut influence how our nerves work.
We already know that bowel disorders, the immune system and obesity are influenced by the microbiome (the 1kg+ of bacteria and other organisms living in our gut) and now there is evidence that it can influence stress, anxiety and depression.
Professor John Cryan, head of the Department of Anatomy and Neuroscience at UCC, told this newspaper’s science editor, Dick Ahlstrom, that our brains have developed with signals from the microbes all the time.
Irving Kirsch, a lecturer in medicine at Harvard University, has produced a body of research showing that the effect of pharmaceutical drugs used for depression had little more effect than placebo.
Kirsch put in a freedom of information request to the US Food and Drug Administration on clinical trials of antidepressants.
The response suggested what pharmaceutical firms had not been telling us: with the exception of severe cases, most antidepressants (such as Prozac) performed little or no better than an inert sugar pill placebo.
His research has been criticised on the basis of flaws in those trials and the difficulties in measuring improvements in depression.
But between the placebo effect and the influence of the microbiome on our body and mind, could the herbalists be onto something?
Research in the National Folklore Collection shows many herbal remedies were accompanied by some kind of ritual: usually a chant, prayer, incantation, or sometimes a symbolic rite such as passing a sick person three times around a bush or animal.
People get better, says anthropologist Dan Moerman of the University of Michigan, because of the meaning that is attached to the treatment, whether that’s from a medical doctor or a traditional herbalist.
A range of researchers suggest that how we take our pills is important and they work better if there’s a little ritual around them: take them with a prayer or meditation, before bath time or get someone else to give them to you which will help you feel more cared for.
Bethann Roche is one of the founders of the Irish Medical Anthropology Network, and her own background is in anthropology and medicine.
She has spent most of her working life as a public health doctor in Ireland and many years examining the phenomenon of faith healing. She says anthropology has a contribution to make to health – and she emphasises the word health as distinct from medicine.
Regarding magic she say: “it is helpful to look at this in total context rather than blaming health professionals for being too narrow-minded or patients for being too superstitious”.
Isn’t placebo just a polite way of saying “it’s all in your head” I ask Dr Dilis Clare, a GP and practicing herbalist based in Galway.
She laughs heartily. “And isn’t that a wonderful place to be? Your healing is all in your head. That is fantastic.”
I grimace and prevaricate. Well, I say, the implication is that you were imagining it all along.
The smile falls from her face.
“So?” she asks. “If imagination is so powerful that it can stop coals burning feet, why would it not be strong enough to either give you IBS or be a part of it?”
If you have an abnormal microbiome it produces hormones which are like small protein molecules going straight to the brain, easily absorbed across the gut barrier and blood brain barrier.
“Which came first, the illness or the imagination, the chicken of the egg? Does it matter?”
Um babuíno sobreviveu por dois anos e meio após ter um coração de porco transplantado em seu abdômen. Em pesquisas anteriores, primatas sobreviviam no máximo 500 dias. O recorde foi divulgado na última terça-feira (5) na revista Nature Communications e abre espaço para transplantes entre suínos e humanos no futuro.
O método utilizou uma combinação de modificação genética e drogas imunossupressoras em cinco babuínos. Os corações dos porcos não substituíam os dos primatas — que continuaram com a função de bombear o sangue, mas estavam ligados ao sistema circulatório por meio de dois grandes vasos sanguíneos no abdômen.
Muitas vezes, o sistema imunológico do receptor rejeita o coração do doador por reconhecê-lo como estranho e, portanto, uma ameaça. Na pesquisa com babuínos, os corações dos porcos foram geneticamente modificados para ter alta tolerância à resposta imune. Os cientistas norte-americanos e alemães também adicionaram uma assinatura genética humana para ajudar a prevenir a coagulação do sangue.
Apenas um dos babuínos atingiu a marca de 945 dias vivo. A média entre os cinco foi de 298 dias. A equipe pensa em estender a pesquisa para a substituição dos órgãos.
Transplantes em humanos
Os cientistas têm feito experiências com transplante de rins, coração e fígados de primatas em seres humanos desde a década de 1960. Nenhum sobreviveu por mais de alguns meses.
Por conta da proximidade genética, os primatas eram os melhores candidatos a doadores. Mas não há uma grande quantidade de macacos criados em cativeiro.
Os corações dos porcos são anatomicamente semelhantes aos corações humanos. Os suínos também crescem rápido e são amplamente domesticados.
Pesquisa da Unesp estuda união entre tratamento espiritual e médico. Trabalho é realizado por médicos da Associação Espírita de Botucatu (SP).
Do G1 Bauru e Marília
Passe simples sendo aplicado pelo grupo mediúnico (Foto: Isabela Ribeiro/ G1)
Um grupo de oito médicos da Associação Espírita de Médicos de Botucatu (SP) se reuniu para pesquisar a influência da terapêutica energética do “passe” espírita na redução da ansiedade. A técnica, originada das práticas de cura do cristianismo primitivo, consiste basicamente na imposição de mãos sobre uma pessoa, a fim de transferir boas energias e tratar o lado espiritual de quem recebe o “passe”.
A pesquisa teve início em 2014 e está em fase de desenvolvimento na Faculdade de Medicina de Botucatu/Unesp (FMB). De acordo com o médico infectologista Ricardo de Souza Cavalcante, a inspiração para a pesquisa surgiu de outro grupo de médicos, de São Paulo, que iniciou um estudo sobre a eficácia de uma técnica semelhante, o Reiki, de origem japonesa.
Passistas preparados iniciar sessão do passe conjugado (Foto: Isabela Ribeiro/ G1)
O estudo sobre o “passe” é feito com voluntários, não necessariamente espíritas ou praticantes de alguma religião, que não estejam fazendo nenhum tipo de tratamento psicológico ou psiquiátrico. “Primeiramente, nós fazemos uma avaliação médica para verificar se o voluntário tem realmente o diagnóstico de ansiedade. Se confirmado, o paciente passa a frequentar a sala de estudos uma vez por semana, durante oito semanas, para receber o ‘passe’ ”, explica Ricardo.
Ainda de acordo com o médico, antes de iniciar o tratamento, os participantes passam por um tempo de meditação e concentração. Música ambiente é utilizada para relaxar e, por 5 minutos, um terapeuta impõe as mãos sobre a cabeça, tórax e barriga do voluntário. São levados em conta, na análise, níveis de depressão, qualidade de vida e grau de espiritualidade do paciente.
Os voluntários respondem a um questionário ao final de cada sessão e, alguns deles, passam por exames de eletroencefalograma, para medir as variações das ondas cerebrais antes, durante e depois do procedimento.
Passe conjugado, com dois ou mais passistas (Foto: Isabela Ribeiro/ G1)
Ciência e espiritualidade
Nas últimas décadas, muitos estudos científicos têm sido feitos a fim de demonstrar os benefícios de aliar o trabalho com a espiritualidade ao tratamento médico convencional.
“Houve uma separação histórica, mas eu acredito que essas coisas precisam caminhar juntas. O ser humano deve ser visto como um todo. Nós não somos só um amontoado de células. Temos, comprovadamente, um lado emocional, espiritual”, pontua Ricardo.
A dona de casa Silvia Helena Vieira da Silva, de 47 anos, é uma das voluntárias que participarão da pesquisa. Católica, ela acredita que as práticas espíritas podem colaborar para o bem-estar. “Nós estamos tão ansiosos, nos medicando tanto, que eu gostaria de experimentar algo que não fosse medicamento, até porque remédios atacam meu organismo. Se eu puder fugir, eu fujo”, declara Silvia, que sofre as consequências físicas da ansiedade.
“Nós que temos filhos, estamos sempre na expectativa de algo. É um convívio constante com a ansiedade. Quando ela aparece, meu intestino solta, sinto dores no estômago e na cabeça. Quero muito que esta iniciativa dê certo”, conta.
“Muitos voluntários estão participando da pesquisa. Eles precisaram demonstrar ter ansiedade e não esteja em tratamento psicológico pode participar. Nosso objetivo não é converter ninguém”, explica o médico.
Os interessados em participar da pesquisa podem obter informações pelo telefone (14) 3811- 6547.
Leopoldo Zanardi, diretor de comunicação do Centro Espírita Amor e Caridade (Foto: Isabela Ribeiro/ G1)
Passe na Dourtina Espírita
De acordo com Leopoldo Zanardi, diretor de comunicação do Centro Espírita Amor e Caridade, de Bauru (SP), o “passe” trata-se de uma assistência espiritual, denominada de fluidoterapia, e que não anula a necessidade do tratamento médico. Este nome é dado por ser uma transferência de energias. “As mãos são colocadas de 10 a 15 centímetros acima da cabeça, não há toque físico. A Federação Espírita brasileira aconselha que as mãos sejam colocadas apenas sobre a cabeça”, conta Leopoldo.
Ele explica também que, na doutrina espírita, acredita-se que além das boas energias passadas pelo passista, existe também a atuação de espíritos que identificam e agem diretamente no problema de quem está recebendo o passe, seja ele físico, emocional ou espiritual. O procedimento pode ser individual (“passe simples”) ou em grupo (“passe conjugado” – 2 ou mais passistas realizam o procedimento). Mas quanto mais pessoas estiverem juntas, melhor, de acordo com Leopoldo.
Prece feita pelo grupo mediúnico antes de dar início ao procedimento (Foto: Isabela Ribeiro/ G1)
No Centro Espírita, o passe simples pode ser tomado por qualquer um que desejar, sem a necessidade de entrevista. Mas, para aqueles que querem tratar algo específico, é necessário passar pelo atendimento, onde será identificada a necessidade de cada pessoa.
Em seguida a pessoa recebe um papel que dá direito a oito passes, que devem ser tomados uma vez por semana. Em ambos os casos, os pacientes entram em uma sala, após um período de oração do grupo mediúnico (responsável por aplicar os passes), sentam-se nas cadeiras e estendem as duas mãos para frente, como quem está para receber algo.
Os passistas, como também são chamados os membros do grupo mediúnico, impõe as mãos sobre a cabeça das pessoas, uma nova prece é anunciada e, após poucos minutos de silêncio, tudo está feito. Depois de dispensar as pessoas, os passistas fazem outra oração de agradecimento e encerram o procedimento. “É importante ressaltar que não se deve abrir mão do tratamento médico. Nós oferecemos uma assistência espiritual. Também não basta apenas ‘tomar o passe’. É necessário assistir às palestras, mudar o pensamento, buscar ser melhor a cada dia. Dominar as más inclinações e fazer caridade. Precisamos estar em constante evolução”, completa Leopoldo.
Iole Angelo Cintra fala de sua experiência com o passe espírita (Foto: Isabela Ribeiro/ G1)
Para a dona de casa Iole Angelo Cintra, de 46 anos, tomar os “passes” trouxe melhora para problemas de insônia e dor de cabeça que, segundo ela, tinham raiz espiritual.
“Eu não dormia direito à noite. Aqui no centro descobri que eu tinha ‘desdobramento’, que é uma espécie de mediunidade que me faz sair do meu corpo. Eu me via dormindo à noite e andava pela minha casa. Quando comecei a tomar os passes, as dores de cabeça sumiram e eu pude controlar mais esse desdobramento. O efeito do passe é ótimo, mas também depende da pessoa se esforçar para ser alguém melhor”, contou Iole.
Aplicação do passe simples pelo grupo mediúnico (Foto: Isabela Ribeiro/ G1)
Técnica para estender vidas por algumas horas nunca foi testada em humanos
“Quando seu corpo está com temperatura de 10 graus, sem atividade cerebral, batimento cardíaco e sangue – é um consenso que você está morto”, diz o professor Peter Rhee, da universidade do Arizona. “Mas ainda assim, nós conseguimos trazer você de volta.”
Rhee não está exagerando. Com Samuel Tisherman, da Universidade de Maryland, nos Estados Unidos, ele comprovou que é possível manter o corpo em estado “suspenso” por horas.
O procedimento já foi testado com animais e é o mais radical possível. Envolve retirar todo o sangue do corpo e esfriá-lo até 20 graus abaixo da sua temperatura normal.
Quando o problema no corpo do paciente é resolvido, o sangue volta a ser bombeado, reaquecendo lentamente o sistema. Quando a temperatura do sangue chega a 30 graus, o coração volta a bater.
Os animais submetidos a esse teste tiveram poucos efeitos colaterais ao despertar. “Eles ficam um pouco grogue por um tempo, mas no dia seguinte já estão bem”, diz Tisherman.
Testes com humanos
Tisherman causou um frisson internacional este ano quando anunciou que está pronto para fazer testes com humanos. As primeiras cobaias seriam vítimas de armas de fogo em Pittsburgh, na Pensilvânia.
Nesse caso, são pacientes cujos corações já pararam de bater e que não teriam mais chances de sobreviver, pelas técnicas convencionais. O médico americano teme que, por conta de manchetes imprecisas na imprensa, tenha-se criado uma ideia equivocada da sua pesquisa
Peter Rhee ajudou a criar técnica inovadora que envolve retirar o sangue do paciente
“Quando as pessoas pensam no assunto, elas pensam em viajantes espaciais sendo congelados e acordados em Júpiter, ou no [personagem] Han Solo, de Guerra nas Estrelas”, diz Tisherman.
“Isso não ajuda, porque é importante que as pessoas saibam que não se trata de ficção científica.”
Os esforços para trazer as pessoas de volta do que se acredita ser a morte já existem há décadas. Tisherman começou seus estudos com Peter Safar, que nos anos 1960 criou a técnica pioneira de reanimação cardiorrespiratória. Com uma massagem cardíaca, é possível manter o coração artificialmente ativo por um tempo.
“Sempre fomos criados para acreditar que a morte é um momento absoluto, e que quando morremos não tem mais volta”, diz Sam Parnia, da Universidade Estadual de Nova York.
“Com a descoberta básica da reanimação cardiorrespiratória nós passamos a entender que as células do corpo demoram horas para atingir uma morte irreversível. Mesmo depois que você já virou um cadáver, ainda existe como resgatá-lo.”
Recentemente, um homem de 40 anos no Texas sobreviveu por três horas e meia com a reanimação cardiorrespiratória.
Segundo os médicos de plantão, “todo mundo com dois braços foi chamado para se revezar fazendo as compressões no peito do paciente”.
Durante a massagem, ele continuava consciente e conversando com os médicos, mas caso o procedimento fosse interrompido, ele morreria. Eventualmente ele se recuperou e acabou sobrevivendo.
Esse caso de rescucitação ao longo de um grande período só funcionou porque não havia uma grande lesão no corpo do paciente. Mas isso é raro.
A técnica desenvolvida agora por Tisherman é baseada na ideia de que baixas temperaturas mantêm o corpo vivo por mais tempo – cerca de uma ou duas horas.
O sangue é retirado e no seu lugar é colocada uma solução salina que ajuda a rebaixar a temperatura do corpo para algo como 10 a 15 graus Celsius.
Em experiência com porcos, cerca de 90% deles se recuperaram quando o sangue foi bombeado de volta. Cada animal passou mais de uma hora no “limbo”.
Técnica de massagem cardíaca já ajuda a estender a vida de pessoas com paradas
“É uma das coisas mais incríveis de se observar: quando o coração começa a bater de novo”, diz Rhee.
Após a operação, foram realizados vários testes para avaliar se houve dano cerebral. Aparentemente nenhum porco apresentou problemas.
O desafio de obter permissão para testar em humanos tem sido enorme até agora. Tisherman e Rhee finalmente receberam permissão para testar sua técnica com vítimas de tiros em Pittsburgh.
Um dos problemas a ser contornado é ver como os pacientes se adaptam com o sangue de outra pessoa. Os porcos receberam o próprio sangue congelado, mas no caso dos humanos será necessário usar o estoque do banco de sangues.
Se der certo, os médicos acreditam que a técnica poderia ser aplicada não só vítimas de lesões, como tiros e facadas, mas em pessoas com ataque cardíaco.
A pesquisa também está levando a outros estudos sobre qual seria a melhor solução química para reduzir o metabolismo do corpo humano.
When a helicopter rushed a 13-year-old girl showing symptoms suggestive of kidney failure to Stanford’s Packard Children’s Hospital, Jennifer Frankovich was the rheumatologist on call. She and a team of other doctors quickly diagnosed lupus, an autoimmune disease. But as they hurried to treat the girl, Frankovich thought that something about the patient’s particular combination of lupus symptoms — kidney problems, inflamed pancreas and blood vessels — rang a bell. In the past, she’d seen lupus patients with these symptoms develop life-threatening blood clots. Her colleagues in other specialties didn’t think there was cause to give the girl anti-clotting drugs, so Frankovich deferred to them. But she retained her suspicions. “I could not forget these cases,” she says.
Back in her office, she found that the scientific literature had no studies on patients like this to guide her. So she did something unusual: She searched a database of all the lupus patients the hospital had seen over the previous five years, singling out those whose symptoms matched her patient’s, and ran an analysis to see whether they had developed blood clots. “I did some very simple statistics and brought the data to everybody that I had met with that morning,” she says. The change in attitude was striking. “It was very clear, based on the database, that she could be at an increased risk for a clot.”
The girl was given the drug, and she did not develop a clot. “At the end of the day, we don’t know whether it was the right decision,” says Chris Longhurst, a pediatrician and the chief medical information officer at Stanford Children’s Health, who is a colleague of Frankovich’s. But they felt that it was the best they could do with the limited information they had.
A large, costly and time-consuming clinical trial with proper controls might someday prove Frankovich’s hypothesis correct. But large, costly and time-consuming clinical trials are rarely carried out for uncommon complications of this sort. In the absence of such focused research, doctors and scientists are increasingly dipping into enormous troves of data that already exist — namely the aggregated medical records of thousands or even millions of patients to uncover patterns that might help steer care.
The Tatonetti Laboratory at Columbia University is a nexus in this search for signal in the noise. There, Nicholas Tatonetti, an assistant professor of biomedical informatics — an interdisciplinary field that combines computer science and medicine — develops algorithms to trawl medical databases and turn up correlations. For his doctoral thesis, he mined the F.D.A.’s records of adverse drug reactions to identify pairs of medications that seemed to cause problems when taken together. He found an interaction between two very commonly prescribed drugs: The antidepressant paroxetine (marketed as Paxil) and the cholesterol-lowering medication pravastatin were connected to higher blood-sugar levels. Taken individually, the drugs didn’t affect glucose levels. But taken together, the side-effect was impossible to ignore. “Nobody had ever thought to look for it,” Tatonetti says, “and so nobody had ever found it.”
The potential for this practice extends far beyond drug interactions. In the past, researchers noticed that being born in certain months or seasons appears to be linked to a higher risk of some diseases. In the Northern Hemisphere, people with multiple sclerosis tend to be born in the spring, while in the Southern Hemisphere they tend to be born in November; people with schizophrenia tend to have been born during the winter. There are numerous correlations like this, and the reasons for them are still foggy — a problem Tatonetti and a graduate assistant, Mary Boland, hope to solve by parsing the data on a vast array of outside factors. Tatonetti describes it as a quest to figure out “how these diseases could be dependent on birth month in a way that’s not just astrology.” Other researchers think data-mining might also be particularly beneficial for cancer patients, because so few types of cancer are represented in clinical trials.
As with so much network-enabled data-tinkering, this research is freighted with serious privacy concerns. If these analyses are considered part of treatment, hospitals may allow them on the grounds of doing what is best for a patient. But if they are considered medical research, then everyone whose records are being used must give permission. In practice, the distinction can be fuzzy and often depends on the culture of the institution. After Frankovich wrote about her experience in The New England Journal of Medicine in 2011, her hospital warned her not to conduct such analyses again until a proper framework for using patient information was in place.
In the lab, ensuring that the data-mining conclusions hold water can also be tricky. By definition, a medical-records database contains information only on sick people who sought help, so it is inherently incomplete. Also, they lack the controls of a clinical study and are full of other confounding factors that might trip up unwary researchers. Daniel Rubin, a professor of bioinformatics at Stanford, also warns that there have been no studies of data-driven medicine to determine whether it leads to positive outcomes more often than not. Because historical evidence is of “inferior quality,” he says, it has the potential to lead care astray.
Yet despite the pitfalls, developing a “learning health system” — one that can incorporate lessons from its own activities in real time — remains tantalizing to researchers. Stefan Thurner, a professor of complexity studies at the Medical University of Vienna, and his researcher, Peter Klimek, are working with a database of millions of people’s health-insurance claims, building networks of relationships among diseases. As they fill in the network with known connections and new ones mined from the data, Thurner and Klimek hope to be able to predict the health of individuals or of a population over time. On the clinical side, Longhurst has been advocating for a button in electronic medical-record software that would allow doctors to run automated searches for patients like theirs when no other sources of information are available.
With time, and with some crucial refinements, this kind of medicine may eventually become mainstream. Frankovich recalls a conversation with an older colleague. “She told me, ‘Research this decade benefits the next decade,’ ” Frankovich says. “That was how it was. But I feel like it doesn’t have to be that way anymore.”
Após a injeção na corrente sanguínea, cápsulas colidem com as células vermelhas do sangue e fornecem o oxigênio
Um grupo de cientistas desenvolveu uma série de micropartículas cheias de oxigênio que podem ser injetadas na corrente sanguínea e manter as pessoas vivas, mesmo quando as entradas dos pulmões estão obstruídas. Tratam-se de minúsculas cápsulas (de 2 a 4 micrômetros) feitos com uma única camada de lipídio em torno de uma pequena bolha de gás oxigênio. A cápsula é suspensa em um líquido para que as bolhas não fiquem maiores (o que as tornaria mortais). A novidade foi divulgada pelo blog científico “from quarks to quasars” e publicada na revista científica “Pubmed”.
Após a injeção na corrente sanguínea, as cápsulas colidem com as células vermelhas do sangue, que fornecerão o oxigênio para as células. Em testes anteriores, cerca de 70% do gás injetado fez com sucesso seu caminho para a corrente sanguínea. Este método de injeção foi tão bem sucedido que os cientistas conseguiram manter vivos coelhos com a traqueia bloqueada por quinze minutos.
A novidade levanta a seguinte dúvida a ser respondida após testes seguintes: será que podemos manter um fluxo constante de respiração mesmo debaixo da água, podendo viver lá para sempre?
Interface não teria informação cerebral suficiente para fazer deficiente controlar estrutura que o permita andar
Pesquisadores que estudam a transmissão de informação do cérebro para os músculos estão questionando a promessa do neurocientista brasileiro Miguel Nicolelis, que anunciou que fará um jovem com lesão de medula espinhal dar o pontapé inicial da Copa do Mundo.
Em uma ilustração promocional do programa “Andar de Novo”, liderado por Nicolelis, uma mulher vestindo uma armadura robótica aparece levantando-se de uma cadeira de rodas, caminhando até a bola e chutando-a.
Um cientista que chegou a trabalhar com Nicolelis no IINN (Instituto Internacional de Neurociências de Natal), porém, diz que essa cena, caso se concretize, é mais bem descrita como um robô controlando os movimentos de uma pessoa do que o inverso.
“Essa demonstração é prematura e, na melhor das hipóteses, será só uma propaganda daquilo que ele espera que aconteça um dia”, diz Edward Tehovnik, americano que deixou o IINN após uma cisão interna em 2011.
Hoje professor na UFRN (Universidade Federal do Rio Grande do Norte), ele diz que Nicolelis ainda não publicou estudos suficientes para mostrar que sua técnica está pronta para reabilitar pessoas com problemas neuromotores. “Eu não digo que isso jamais acontecerá, mas a esta altura é prematuro”, diz.
BITS POR SEGUNDO
Segundo artigos publicados recentemente por Tehovnik, nenhum grupo de pesquisa consegue ainda extrair uma quantidade de informação no cérebro com velocidade suficiente para controlar movimentos complexos.
Segundo o pesquisador, com uma taxa menor de “bits” de informação por segundo, uma interface que conecte um cérebro a uma máquina já é capaz de tarefas simples, como ligar/desligar um aparelho, mas não conseguiria controlar uma perna eletromecânica com precisão.
“Não dá para obter nada que se pareça com um ser humano andando na rua”, diz Tehovnik. Segundo o cientista, o campo de pesquisa das interfaces cérebro-máquina foi “corrompido” pela oferta de dinheiro para os grupos de pesquisa, que hoje estariam mais preocupados em levantar verbas do que em solucionar problemas científicos que ainda se apresentam como barreiras à sua evolução.
Para ele, demonstrações públicas de uma tecnologia tão incipiente alimentam falsas expectativas em pessoas paralíticas. “Acho que isso deveria estar restrito ao laboratório nesse ponto”, diz. Tehovnik explica pormenores técnicos de sua argumentação em um artigo de opinião na revista “Mente&Cérebro”.
Outros cientistas que trabalham na linha de pesquisa de Tehovnik são menos contundentes na crítica a Nicolelis, mas também veem um excesso de entusiasmo.
Michael Graziano, da Universidade de Princeton, diz ver excesso de ênfase na engenharia dos projetos, em detrimento das questões de ciência básica. “Dizer que dentro de dez anos resolveremos esses problemas soa muito implausível para mim.”
A tentativa de transformar homossexuais em héteros usando métodos “científicos” já tem mais de 150 anos. A medicina, segundo os pesquisadores James Naylor Green e Ronaldo Polito, já tentou de tudo para “curá-los”.
“Confinamento, choques elétricos, medicação pesada, tratamento psicológico ou psiquiátrico, psicanálise individual, de grupo e familiar, camisa de força, transplante de testículos, eis aí algumas das “técnicas” de intervenção no corpo e na mente dos homens que preferem se relacionar afetiva e sexualmente com outros homens”, contam em “Frescos Trópicos”.
No livro, os autores examinam o período entre as décadas de 1870 e 1980, fundamentados em informações publicadas nessa época. Abaixo, leia trecho de “Frescos Trópicos”.
“Pode-se dizer que a medicina, nos últimos 150 anos, já tentou ou propôs de tudo para a “cura” dos homossexuais. Confinamento, choques elétricos, medicação pesada, tratamento psicológico ou psiquiátrico, psicanálise individual, de grupo e familiar, camisa de força, transplante de testículos, eis aí algumas das “técnicas” de intervenção no corpo e na mente dos homens que preferem se relacionar afetiva e sexualmente com outros homens.
Entre inúmeros exemplos do passado, citemos Pires de Almeira, em “Homossexualismo”, de 1906, que propõe um tratamento específico para os invertidos. Mas, primeiro, vamos entender o que ele chama de “invertido”: “é aquele que, de nascença, é já invertivo, e que, em toda a associação sexual, representa o papel de macho: é, pois, um macho mais macho, se se trata de um homem”. “Invertidos”, portanto, nascem homossexuais, diferentemente dos “pervertidos” que, segundo o autor, “depois de terem sido já sexuais normais, se tornaram invertidos por qualquer motivo”.
Para Pires de Almeida, o tratamento dos “pervertidos” é somente um pouco mais simples do que dos “invertidos”. Para estes ele recomenda, entre outros procedimentos:
“O invertido deveria ser acompanhado desde a infância, vigiado por uma espécie de tutor que, à feição de um aparelho ortopédico moral, fosse-lhe obstáculo ao desvio, trabalhando pertinentemente para que a consolidação se efetue em absoluto. (…)
Antes de tudo, devemos lembrar que tais desregramentos são puramente moléstias mentais; e, por isso, aconselharei, quando não tenhamos acompanhando o indivíduo desde a infância, e hajamos iniciado o tratamento em idade tardia, medicá-lo pela estética sugestiva; isto é, por meio do magnetismo e da sugestão combinados: bem orientar-lhe o espírito, dirigindo sua atenção para a beleza das formas femininas, cercá-lo de modelos célebres em pintura, na estatuária principalmente, e obrigá-lo à leitura de obras românticas em que tais belezas despertem as paixões tumultuosas. Facilitar-se-lhe-á o encontro com mulheres plasticamente sensuais, fáceis às carícias, graciosas, faceiras; não se hesitará até diante de certos subterfúrgios a princípio, tal como, por exemplo, o de provocar o coito do invertido com mulheres vestidas de homem; ou mesmo obrigá-lo a pernoitar com mulheres completamente nuas, ainda que não as goze.
Se, porém, existe, da parte do doente, repulsão invencível para as sociedades ambíguas, recorrer-se-á à convivência em outro meio: mulheres atraentes, sim, porém puras, puríssimas, virtuosas: o seio perfumado das famílias.”
“Frescos Trópicos” Autores: Ronald Polito, James Naylor Green Editora: José Olympio Páginas: 196 Quanto: R$ 23,90 (preço promocional*) Onde comprar: pelo telefone 0800-140090 ou pelo site da Livraria da Folha
Apr. 19, 2013 — Mathematical prediction models are better than doctors at predicting the outcomes and responses of lung cancer patients to treatment, according to new research presented today (Saturday) at the 2nd Forum of the European Society for Radiotherapy and Oncology (ESTRO).
These differences apply even after the doctor has seen the patient, which can provide extra information, and knows what the treatment plan and radiation dose will be.
“The number of treatment options available for lung cancer patients are increasing, as well as the amount of information available to the individual patient. It is evident that this will complicate the task of the doctor in the future,” said the presenter, Dr Cary Oberije, a postdoctoral researcher at the MAASTRO Clinic, Maastricht University Medical Center, Maastricht, The Netherlands. “If models based on patient, tumour and treatment characteristics already out-perform the doctors, then it is unethical to make treatment decisions based solely on the doctors’ opinions. We believe models should be implemented in clinical practice to guide decisions.”
Dr Oberije and her colleagues in The Netherlands used mathematical prediction models that had already been tested and published. The models use information from previous patients to create a statistical formula that can be used to predict the probability of outcome and responses to treatment using radiotherapy with or without chemotherapy for future patients.
Having obtained predictions from the mathematical models, the researchers asked experienced radiation oncologists to predict the likelihood of lung cancer patients surviving for two years, or suffering from shortness of breath (dyspnea) and difficulty swallowing (dysphagia) at two points in time:
1) after they had seen the patient for the first time, and
2) after the treatment plan was made. At the first time point, the doctors predicted two-year survival for 121 patients, dyspnea for 139 and dysphagia for 146 patients.
At the second time point, predictions were only available for 35, 39 and 41 patients respectively.
For all three predictions and at both time points, the mathematical models substantially outperformed the doctors’ predictions, with the doctors’ predictions being little better than those expected by chance.
The researchers plotted the results on a special graph  on which the area below the plotted line is used for measuring the accuracy of predictions; 1 represents a perfect prediction, while 0.5 represents predictions that were right in 50% of cases, i.e. the same as chance. They found that the model predictions at the first time point were 0.71 for two-year survival, 0.76 for dyspnea and 0.72 for dysphagia. In contrast, the doctors’ predictions were 0.56, 0.59 and 0.52 respectively.
The models had a better positive predictive value (PPV) — a measure of the proportion of patients who were correctly assessed as being at risk of dying within two years or suffering from dyspnea and dysphagia — than the doctors. The negative predictive value (NPV) — a measure of the proportion of patients that would not die within two years or suffer from dyspnea and dysphagia — was comparable between the models and the doctors.
“This indicates that the models were better at identifying high risk patients that have a very low chance of surviving or a very high chance of developing severe dyspnea or dysphagia,” said Dr Oberije.
The researchers say that it is important that further research is carried out into how prediction models can be integrated into standard clinical care. In addition, further improvement of the models by incorporating all the latest advances in areas such as genetics, imaging and other factors, is important. This will make it possible to tailor treatment to the individual patient’s biological make-up and tumour type
“In our opinion, individualised treatment can only succeed if prediction models are used in clinical practice. We have shown that current models already outperform doctors. Therefore, this study can be used as a strong argument in favour of using prediction models and changing current clinical practice,” said Dr Oberije.
“Correct prediction of outcomes is important for several reasons,” she continued. “First, it offers the possibility to discuss treatment options with patients. If survival chances are very low, some patients might opt for a less aggressive treatment with fewer side-effects and better quality of life. Second, it could be used to assess which patients are eligible for a specific clinical trial. Third, correct predictions make it possible to improve and optimise the treatment. Currently, treatment guidelines are applied to the whole lung cancer population, but we know that some patients are cured while others are not and some patients suffer from severe side-effects while others don’t. We know that there are many factors that play a role in the prognosis of patients and prediction models can combine them all.”
At present, prediction models are not used as widely as they could be by doctors. Dr Oberije says there are a number of reasons: some models lack clinical credibility; others have not yet been tested; the models need to be available and easy to use by doctors; and many doctors still think that seeing a patient gives them information that cannot be captured in a model. “Our study shows that it is very unlikely that a doctor can outperform a model,” she concluded.
President of ESTRO, Professor Vincenzo Valentini, a radiation oncologist at the Policlinico Universitario A. Gemelli, Rome, Italy, commented: “The booming growth of biological, imaging and clinical information will challenge the decision capacity of every oncologist. The understanding of the knowledge management sciences is becoming a priority for radiation oncologists in order for them to tailor their choices to cure and care for individual patients.”
 For the mathematicians among you, the graph is known as an Area Under the Curve (AUC) of the Receiver Operating Characteristic (ROC).
 This work was partially funded by grants from the Dutch Cancer Society (KWF), the European Fund for Regional Development (INTERREG/EFRO), and the Center for Translational Molecular Medicine (CTMM).
Sep. 20, 2012 — Mathematical modeling being tested by researchers at the School of Science at Indiana University-Purdue University Indianapolis (IUPUI) and the IU School of Medicine has the potential to impact the knowledge and treatment of several diseases that continue to challenge scientists across the world.
Mathematical modeling allows researchers to closely mirror patient data, which is helpful in determining the cause and effect of certain risk factors. (Credit: Image courtesy of Indiana University-Purdue University Indianapolis School of Science)
The National Science Foundation recently recognized the work led by Drs. Giovanna Guidoboni, associate professor of mathematics in the School of Science, and Alon Harris, professor of ophthalmology and director of clinical research at the Eugene and Marilyn Glick Eye Institute, for its new approach to understanding what actually causes debilitating diseases like glaucoma. Their research could translate to more efficient treatments for diseases like diabetes and hypertension as well.
Glaucoma is the second-leading cause of blindness in the world, yet the only primary form of treatment is to reduce pressure in the patient’s eye. However, as many as one-third of the glaucoma patients have no elevated eye pressure, and the current inability to better understand what risk factors led to the disease can hinder treatment options.
Mathematical modeling, which creates an abstract model using mathematical language to describe the behavior of a system, allows doctors to better measure things like blood flow and oxygen levels in fine detail in the eye, the easiest human organ to study without invasive procedures. Models also can be used to estimate what cannot be measured directly, such as the pressure in the ocular vessels.
Through simulations, the mathematical model can help doctors determine the cause and effect of reduced blood flow, cell death and ocular pressure and how those risk factors affect one another in the presence of glaucoma. A better understanding of these factors — and the ability to accurately measure their interaction — could greatly improve doctors’ ability to treat the root causes of disease, Harris said.
“This is a unique, fresh approach to research and treatment,” Harris said. “We’re talking about the ability to identify tailor-made treatments for individual patients for diseases that are multi-factorial and where it’s difficult to isolate the path and physicality of the disease.”
Harris and Guidoboni have worked together for the past 18 months on the project. Dr. Julia Arciero, assistant professor of mathematical sciences at IUPUI, is a principle investigator on the project as well with expertise in mathematical modeling of blood flow.
The preliminary findings have been published in the British Journal of Ophthalmology and the research currently is under review in the Journal of Mathematical Biosciences and Engineering and the European Journal of Ophthalmology. The NSF recognized their work on Aug. 30 with a three-year grant to continue their research.
The pair also presented their findings at the 2012 annual meeting of the Association for Research in Vision and Ophthalmology (ARVO). Harris suggested that, out of the 12,000 ARVO participants, their group might have been the only research group to include mathematicians, which speaks highly of the cross-disciplinary collaboration occurring regularly at IUPUI.
“We approached this as a pure math question, where you try to solve a certain problem with the data you have,” said Guidoboni, co-director of the School of Science Institute for Mathematical Modeling and Computational Science (iM2CS) at IUPUI, a research center dedicated to using modeling methods to solve problems in medicine, the environment and computer science.
Guidoboni has expertise in applied mathematics. She also has a background in engineering, which she said helps her to approach medical research from a tactical standpoint where the data and feedback determine the model. She previously used modeling to better understand blood flow from the heart.
Harris said the potential impact has created quite a stir in the ocular research community.
“The response among our peers has been unheard of. The scientific community has been accepting of this new method and they are embracing it,” Harris added.
The group will seek additional research funding through the National Institute of Health, The Glaucoma Foundation and other medical entities that might benefit from the research. The initial success of their collaboration should lead to more cross-disciplinary projects in the future, Guidoboni said.
Also contributing are graduate students in mathematics, Lucia Carichino and Simone Cassani, and researchers in the department of ophthalmology, including Drs. Brent Siesky, Annahita Amireskandari and Leslie Tobe.