Coronavirus Files: Clinical Trials Lack Diversity

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August 25, 2020

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The Center for Health Journalism has begun offering a special newsletter geared to journalists as they report on one of the biggest and most complex stories of our times. Each Monday, while the pandemic runs its course, The Coronavirus Files will provide tips and resources and highlight exemplary work to help you with your work. This week, the Center for Health Journalism’s Coronavirus Files Monday newsletter is curated and reported by science writer Ula Chrobak. Have a suggestion or a request? Write us at editor@centerforhealthjournalism.org.

The Health Divide: COVID-19 Clinical Trials Lack Diversity
 
Despite the pandemic’s disproportionate impact on people of color, investigators leading clinical trials for COVID-19 treatments have failed to ensure diversity among participants, according to a new study published in Contemporary Clinical Trials Communicationswhich analyzed US trials. One third of the trials did not report ethnicity or race of participants, and, in studies where the information was made available, Black patients were underrepresented “relative to the burden of disease among the Black communities in which these studies took place,” study author and University of California San Francisco oncologist Halo Borno said in a Q&A with STAT News.
 
Although Black and Indigenous people have good reason to distrust the medical establishment due to historic injustices, “there’s been a lot of data that show that racial-ethnic minorities … actually have pretty high rates of acceptance to clinical research when offered opportunities,” Borno told STAT News reporters Adam FeuersteinDamian Garde and Rebecca Robbins. She urged researchers to be cognizant of how their outreach strategies can help recruit diverse participants and that—at a minimum—investigators for clinical trials need to uniformly collect and report race data.
 
“I think that if we do not ensure diversity in these COVID-19 clinical research studies, we may ultimately render interventions, whether it be drug or vaccines, that do not uniformly demonstrate efficacy across populations, or have side effects that we only capture later on,” Borno said.
 

Neck Gaiters, Wildfires, and the Upcoming Flu Season 

California’s Fire Response Relies on Inmates — Prison Outbreaks Mean They Can’t Help
 
Heat and drought exacerbated by climate change, decades of fire suppression, and insect attacks have supercharged California’s wildfires. This year, the state faces an additional challenge: a lack of incarcerated firefighters who California typically relies on to beat back raging infernos each year.
 
Typically, the state employs about 2,200 prisoners at 43 camps across the state, report Ryan Sabalow and Jasno Pohl at the Sacramento Bee. They are paid between $2 and $3.90 an hour, plus an extra dollar hourly when they are at the fire line. It’s the highest paid job available to prisoners. But many would-be firefighters were part of an early release program initiated to help mitigate prison outbreaks, and 12 inmate fire camps are on lockdown to curb the spread of COVID-19 after an outbreak occurred at a northern California prison where the incarcerated firefighters received training.
 
Prisoners are especially vulnerable in this pandemic. They can’t maintain six feet of space in their crowded confinement and frequently can’t get hand sanitizer, as Yessenia Funes writes for GizmodoThe Marshall Project has found that more than 100,000 incarcerated individuals around the country have tested positive so far, and the week of August 11 set a record for new cases among prisoners.
 
Neck Gaiters and the Potential for Misguided Shaming
 
“Wearing a neck gaiter may be worse than no mask at all, researchers find,” reads an August 11 headline in the Washington Post. That advisory was shared widely, fueling new anxieties among already-anxious Americans. However, the study that originally prompted that story does not prove such a conclusionSusan Matthews writes for Slate. The purpose of the study was actually to simply evaluate a method, not create a definitive ranking of masks, writes Matthews.
 
For the study, a Duke University research team created a simple and cheap method to compare masks using a laser and a cell phone camera. As exhaled particles escape a mask and pass through the laser, the cell phone camera can pick up just how many got through. The researchers found that a participant testing a gaiter “spewed 110 percent the amount of droplets that were spewed when not wearing a mask,” writes Matthews, and suggest it’s because the neck gaiter sheared larger droplets into smaller ones as a breath passed through, resulting in a greater count.
 
But the test only involved one participant, so there are many other explanations possible. It could be simply that the particular gaiter worn was not a good fit for the wearer’s face. Also, even if that finding was replicated, we can’t say that neck gaiters are worse than nothing without demonstrating that the more, smaller droplets are somehow more infectious than fewer but larger droplets. In a tweetRobinson Meyer, staff writer at The Atlantic, said: “The flawed neck-gaiter study is almost perfect pandemic pop science, because it (1) has a counterintuitive conclusion and (2) licenses readers to complain about an easily recognizable group of people who don’t even know they’re doing something wrong.”
 
Vaccinating Against the Flu Will Help the COVID Response
 
For many, the COVID pandemic has eclipsed our typical worries about more familiar illnesses, like the flu. But getting an annual flu shot is especially critical this year, reports Katherine Harmon Courage for Vox. “If we have COVID-19 on top of the usual seasonal rise in hospital admissions due to influenza and other illnesses, we could overwhelm the health care system,” Tony Moody, an immunologist at Duke University, told Courage.
 
Flu cases could also deplete testing resources needed for COVID-19. The two diseases can have similar symptoms, which could drive up demand for already scarce COVID-19 tests. While the limited activities and protective measures people are engaging in to combat the pandemic could also be beneficial to reduce flu cases, medical experts told Courage that it's still worth getting a shot. Doctors recommend getting vaccinated in early October.
 
Understanding COVID-19 Long-Haulers
 
Do we need to rethink what a “typical” COVID-19 case looks like? That’s the question posed by Ed Yong’s latest in The Atlantic, which suggests there could be hundreds of thousands of so-called COVID “long-haulers” just in the US. Though most long-haulers didn’t need hospitalization for COVID-19, they report severe symptoms that extend far beyond the usual two-week timeframe of “mild” cases. For months after infection, these patients—many of whom are relatively young and were previously healthy—experience myriad, mystifying symptoms, which vary but can include ongoing breathing problems, intense dizziness, blurry vision and memory loss.
 
The popular understanding that most COVID-19 cases are mild and those most affected are elderly or people with preexisting conditions has been detrimental to these long-haulers, argues Yong. This view “affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers.”
 
Though scientific data on such long-term sufferers is lacking, the validity of their claims is supported by a few formal studies that “have hinted at the lingering damage that COVID-19 can inflict,” writes Yong. “In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months.”
 
Long-haulers have found support—and opportunities to learn about their illness—online. As Tanya Basu writes for MIT Technology Review, a popular Slack group helped give rise to what might be the first in-depth look at their symptoms. Here is the full study, based on a survey with 640 responses.
 
And Don't Miss...
 
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  • "How our brains numb us to COVID-19’s risks — and what we can do about it." The Washington Post
  • "Meatpacking Companies Dismissed Years of Warnings but Now Say Nobody Could Have Prepared for COVID-19." ProPublica