John Weiser, a physician and researcher, has been treating people with HIV since the AIDS epidemic began in the 1980s. He joined the CDC's HIV Prevention team in 2011 to help lead the Medical Surveillance Project, the only in-depth study of HIV in the United States. The project shaped the country's response to the epidemic for two decades, but the Trump administration censored it. last year's results and stopped funding it.
Weiser spoke with KFF Health News the evening before World AIDS Day, which the U.S. government did not recognize this year for the first time since 1988. This was just the latest blow to efforts to combat HIV. The Trump administration has cut funds provide life-saving HIV care abroad, withheld money on HIV Prevention and Treatment in the United States, and fired HIV experts from the Centers for Disease Control and Prevention.
Weiser was fired from the Centers for Disease Control and Prevention (CDC) during mass layoffs in April, rehired in June, and then resigned. He continues to treat patients at Grady Memorial Hospital in Atlanta. In November he published article that warns against implementation of the presidential decree on censorship of data on transgender people.
The following conversation has been condensed and edited for clarity.
LISTEN: Former CDC commissioner John Weiser talks with KFF Health News reporter Amy Maxman about his departure from the agency and why he believes following President Donald Trump's orders to kill transgender people is bad for science and society.
In the first weeks of his presidency, Donald Trump released some decrees with implications for HIV programmes. One of them directed federal employees to exclude gender identities that do not correspond to a person's biological sex assigned at birth.
About how this happened at the CDC:
We were told to remove any mention of gender or transgender people from dozens of research papers and observational reports that had already been published or were about to be published, and to stop collecting information from participants about their gender identity. For example, we had to recalculate HIV data among men who have sex with men, or MSM, a category that the CDC changed to “men who have sex with men.”
At that time, the CDC did not have a director. The order came from above. And there was no discussion about whether we wanted to implement the directive.
On how this directive affected his research:
Using data from the Health Monitoring Project, we found that people with HIV who abuse opioids are more likely to engage in behaviors that could lead to HIV transmission to another person—through unprotected sex or shared injection. And we found that very few people who abused opioids received substance abuse treatment. This information could be useful in changing clinical practice and increasing funding for treatment of people with HIV who misuse opioids.
We were preparing to publish this study, but when I submitted the document to the CDC, I was told to remove the data on the prevalence of opioid abuse among transgender people.
I thought carefully about this and decided not to do it because hiding data for ideological reasons is bad science, and removing people from history hurts real people. I thought about my transgender patients, how I would look them in the face, and what I would say to them as I sat with them in the exam room, knowing that I had erased their existence from the CDC.
I took the paper. It remains unpublished.
About how data deletion harms people:
Clearing the data of transgender people makes them disappear from the real world, pretending they don't exist. This group of people has been greatly affected by HIV, and this type of information helps improve treatment. My transgender patients struggle with poverty, unstable housing, food insecurity, mental health issues, substance abuse, and face a tremendous amount of stigma and discrimination in their daily lives.
My transgender patients struggle to survive every day. They are trying to survive. I think it's important to recognize that transgender people need to feel comfortable in their own skin to be healthy, and denial of acceptance makes their problems worse.
After the decree came out, one of my patients said that she was even more afraid of being in public and not being passed by, and therefore was considering additional surgical treatment to feel safer. It wasn't politics that bothered her. It was about survival.
On why the CDC agreed to the order to remove data on transgender people:
I think the hope was that by complying with the directive, other jobs at the CDC would be saved. And, unfortunately, this was not confirmed. Funding for the medical monitoring project was cut off after 20 years, and the CDC is concerned that the President will eliminate all funding for HIV prevention and surveillance.
One of my concerns was that if it was possible to comply with the gender removal directive, what if the next requirement was that we do not report on people who have emigrated from other countries or people who are homeless? What if there is a directive to withhold data about a specific racial or ethnic group that is not popular? How far will we go?
Some HIV clinics and organizations are considering scaling back their work with transgender people and undocumented immigrants or equity initiatives because they fear losing federal funds.
His advice on these decisions:
The people making these decisions are in a very difficult position. They want to do what's best for their programs. They want to do what's best for their employees. They want to do what is best for the people they are tasked with caring for. These are cautious decisions that must be made after weighing all considerations. I want these leaders to also consider how the decision to essentially throw one group of people under the bus undermines scientific integrity and harms everyone.
And I think that for the rise of autocracy it is also necessary to meet halfway, to compromise, to give in. While all this was happening, I heard an interview with Masha Gessen, a Russian-American journalist writing about the rise of autocracy. Gessen explained that decisions to cooperate are not made because people are unethical or heartless. This is a rational choice. They are designed to protect something important—institutions, families, jobs—even if it means sacrificing principles. According to Gessen, this gradual process of compromise is ultimately what strengthens the power of the autocrat.
On why he left the CDC:
As a physician working for the Centers for Disease Control and Prevention (CDC), the numbers have always described individuals, people whose suffering I witness. When you know someone, it is no longer just a concept that you judge.
I realized that I could provide more value by spending more time with my patients than by working at the CDC under the current administration.
