In our careers as pulmonary and critical-care doctors, we have witnessed a revolution in treating asthma, a disease that affects one in 12 Americans. Newer medications make it possible to reverse the course of the disease and bring people with severe asthma into remission.
These new treatments mean that no one should die of an asthma attack. Yet we continue to see patients with life-threatening flare-ups in the intensive care units where we work. Shockingly, 10 people die of asthma daily in the United States.
Why? Specifically, why do some patients with severe asthma get prescribed the newer drugs more than others? And what is the influence of race or gender on respiratory health?
In recent weeks, studies that would help us answer these and other health equity questions have come under attack from the federal government for their “wokeness” and “shameful” agenda. They have, in a word, been censored.
Censoring research on how to deliver treatments to those most in need isn’t just nonsensical — it puts lives at risk and undermines America’s leadership in medical innovation. Progress cannot occur if scientists are barred from asking certain questions. This is not how science works.
The assault on science began on Jan. 20, when diversity, equity and inclusion programs in the federal government were explicitly ended. Days later, researchers noticed that the Food and Drug Administration had quietly removed guidance on recruiting patients with diverse backgrounds for clinical trials. And by the end of January, Centers for Disease Control and Prevention scientists were instructed to freeze publication, or even retract, articles submitted for publication, to check if they contained newly forbidden words like “gender.” Online tools for navigating public health databases such as the Centers for Disease Control’s Behavioral Risk Factor Surveillance System have disappeared, researchers are being muzzled and meetings to review grants at the National Institutes of Health have been canceled, then rescheduled, then canceled again.
Most alarming is the effect that these executive decrees will soon have on patients. Health equity research has already revealed striking disparities in asthma outcomes. Black Americans are three times as likely to die from asthma as white patients, with the most deaths seen among Black women.
These patients are significantly underrepresented in asthma clinical trials, making it unclear if current treatments are the most effective options for them. They are also less likely to receive the potentially lifesaving new therapies we do have. If we don’t understand how to get the right treatments to the patients who need them most, our attempts to reduce deaths will fall short.
Research on inequality in health has tangible benefits. During the early Covid-19 waves, we cared for critically ill patients. Chelsea, Mass., a predominantly Hispanic community near Boston, had a death rate over three times that of Boston. Recognizing the effect of social factors such as household crowding, poverty and language barriers, public health workers tailored their community engagement, leading Chelsea to have one of the highest vaccination rates in the country for a city with its demographics.
This kind of research into health disparities might now be deemed illegal by the federal government. And it appears that scientific censorship will not end there: The administration is sending a warning directed at all kinds of other medical research, too. Work related to the effects of climate change on human health may also soon be on the chopping block, just as infectious diseases expand their global reach.
Lately, cases of devastating fungal pneumonia have cropped up in our I.C.U.s as climate change has expanded the reach of fungi such as Blastomyces and Coccidioides. Without recognizing climate change’s role in fueling fungal pathogens, doctors may overlook critical diagnoses. (On its website, the C.D.C. says its explainer on climate and fungal disease is “being modified to comply with President Trump’s executive orders.”)
Federal investment in American research and open scientific dialogue have been the lifeblood of medical breakthroughs, changing the outlook for patients not only with asthma but also with cystic fibrosis, lung cancer, diabetes and heart failure. The recent barrage of administrative decrees will only serve to demoralize health workers, stifle innovation, compromise clinical trials, delay the development of new treatments and harm our patients.
Several generations ago, Dr. Rashel Israelson, Dr. Rabin’s great-grandmother and a pioneering Soviet endocrinologist, was denounced during Stalin’s anti-cosmopolitan campaign for the crime of citing Western scientific sources in her dissertation. She lost her laboratory, and her freshly published book was incinerated in the institute’s boiler room.
Nearly 80 years later, our work feels similarly imperiled. The question is: Will the government police words and obstruct research, or will it allow doctors to work freely in the name of health?
Jehan Alladina and C. Corey Hardin are pulmonary and critical-care physicians at Massachusetts General Hospital; Dr. Alladina is also an assistant professor and Dr. Hardin an associate professor at Harvard Medical School. Alexander Rabin is a clinical associate professor of pulmonary and critical-care medicine at the University of Michigan.
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