This HIV expert refused to censor the data and shut down the CDC.

Physician and researcher John Weiser has been treating people with HIV since the AIDS epidemic began in the 1980s. He joined CDC’s HIV Prevention team in 2011 and helped lead the Medical Monitoring Project, the only in-depth survey of HIV across the United States. The project has shaped the nation’s response to the pandemic for two decades, but the Trump administration censored its findings and cut off funding last year.

Weiser spoke to KFF Health News the evening before World AIDS Day, which the U.S. government has not recognized this year for the first time since 1988. It was the latest blow to efforts to combat HIV. The Trump administration cut funding Provided life-saving HIV treatment overseas, withheld funding for HIV prevention and treatment in the United States, and fired HIV experts from the Centers for Disease Control and Prevention.

Weiser was fired from CDC in April during mass layoffs and resigned after being rehired in June. He continues to treat patients at Grady Memorial Hospital in Atlanta. In November he published the following book: warning article Opposes compliance with the President’s order to censor data about transgender people.

The following conversation has been condensed and edited for clarity.

Donald Trump said the following during his first week in office: several executive order Impact on HIV programmes. One directed federal employees to exclude gender identities that did not match the biological sex assigned at birth.

Here’s how this played out at CDC:

We were told to remove all references to gender or transgender people from dozens of research papers and surveillance reports already published or scheduled to be published, and to stop collecting information about gender identity from participants. For example, we had to recalculate HIV levels in men who have sex with men (MSM). MSM is a category that the CDC changed to “men who have sex with men.”

At the time, CDC had no director. The order came from on high. And there was no discussion about whether we would adhere to the guidelines or not.

About how this instruction influenced his research:

Using data from the Medical Monitoring Project, we found that people with HIV who misused opioids were more likely to engage in behaviors that could lead to the transmission of HIV to others through unprotected sex or shared injections. And we found that very few people who misused opioids were receiving treatment for their substance misuse. This information may be useful in changing clinical practice and increasing funding to treat people with HIV who misuse opioids.

We were preparing to publish this study, but when we submitted the paper through the CDC’s approval process, we were told to remove data on the prevalence of opioid misuse among transgender people.

I thought about it carefully and decided not to do it. Because suppressing data for ideological reasons is bad science, and erasing characters from stories harms real people. I thought about my transgender patients, how I would treat them, what I would say to them while I sat in the exam room with them, knowing that the CDC had erased their presence.

I withdrew the paper. It hasn’t been published yet.

About how data deletion harms people:

Deleting data about transgender people has the effect of erasing them from the real world and pretending they don’t exist. This group of people is severely affected by HIV and this type of information will inform improvements in treatment. My transgender patients struggle with poverty, unstable housing, food insecurity, mental health disorders, substance abuse, and face tremendous stigma and discrimination in their daily lives.

My transgender patients are just trying to get by each day. They’re trying to survive. I think it’s important for transgender people to realize that to be healthy, they need to be comfortable in their own bodies. And not acknowledging them adds to their difficulties.

Since the executive order was issued, one of my patients said she has become more fearful of being in public and is considering additional surgical treatment to feel safer. Her interest was not in politics. It was about survival.

Here’s why the CDC ordered transgender data deleted:

I think the hope was that by adhering to the guidelines, other work by the CDC could be omitted. And unfortunately, that has not been proven to be true. Funding for medical monitoring projects has ended after 20 years, and there are concerns within the CDC that the president will cut off all HIV prevention and surveillance funding.

One of the things I was concerned about was that if it was okay to comply with the directive to remove information about gender, what if the next requirement was not to report on people migrating from other countries or people experiencing homelessness? What happens if there is a directive to suppress data about certain unpopular racial or ethnic groups? How far will we go?

Some HIV clinics and organizations have scaled back their work with transgender and undocumented immigrants or considered equity initiatives for fear of losing federal funding.

Here’s his advice on these decisions:

The people who make these decisions are in a really difficult situation. They want to do their best for the program. They want the best for their employees. They want to do their best for those in their care. This is a thoughtful decision that must be made taking into account all considerations. What I want from these leaders is to consider how decisions that essentially throw one group of people under the bus undermine scientific integrity and harm everyone.

And I believe that the rise of autocracy requires coming together, compromising, and acquiescing. While all this was going on, I listened to an interview with Masha Gessen, a Russian-American journalist who writes about the rise of autocracy. Gessen explained that people don’t continue to make decisions because they are unethical or heartless. It’s a reasonable choice. They are created to protect what is important – your institutions, your family, your career – even if it means sacrificing your principles. Gessen’s point is that this gradual process of compromise ultimately consolidates the dictator’s power.

Here’s why he resigned from CDC:

As a physician working at the CDC, numbers have always described the suffering individuals I witness. Once you get to know someone, that person is no longer a concept you can judge.

I realized that I could get more done by spending more time with patients than working at the CDC under this administration.