‘Fund research, not Tesla trucks’: The HIV casualties of Trump’s war on science

In Yerba Buena Gardens, two blocks of public parks and playgrounds in San Francisco’s downtown art district, Mark Harrington rallies a crowd of about 400.

“Research is under attack! What do we do?” he shouts into the microphone.

“Act up, fight back,” they respond.

“People with Aids are under attack. What do we do?” Harrington calls out.

“Act up, fight back!”

It’s a familiar battle cry for Harrington who was 20 when he was diagnosed with HIV in 1985. But it is also one he never expected would be needed again.

Harrington is one of the co-founders of the Treatment Action Group, which has its origins in the US Aids activist organisation ACT UP. He co-led the “seize control of the Food & Drug Administration” protest in 1988 and the “storm the National Institutes of Health” demonstration in 1990, which pressured both agencies to prioritise HIV. The FDA is the US’s medicines regulator and the NIH its medical research agency.

But last week, he was at a crossroads again, surrounded by people holding posters with four-decade-old slogans — like “silence = death” — when activists took on the Reagan administration.

“Let me remind you,” Harrington calls out, “in the early years people with HIV had to fight for the right to be studied.” 

He pulls the mic closer to his mouth and raises his arm: “What the people in the White House are now [again] doing is an act of premeditated murder on 40-million people living with HIV around the world.”   

Harrington is referring to the Trump administration’s shutdown of US government-funded HIV projects in the US and other countries, mostly states like South Africa with high HIV infection rates. 

But this protest, organised by the San Francisco Aids Foundation and one of many across the US, is fighting the government’s stripping of scientific research institutions’ grants, their political independence and their freedom.

Right: Croi scientists’ open letter to US secretary of state Marco Rubio

“When they say what we can and can’t study, they’re imposing fascist restraints on the kind of science that we need to end this pandemic,” Harrington shouts. 

“They say sex and gender are the same thing. But that’s such bullshit. It flies in the face of so much science.”

A few hundred metres away, more than 3,000 of the world’s top medical scientists are waiting for the renowned epidemiologist Chris Beyrer’s plenary talk to start in the Moscone Centre at the 32nd Conference on Retroviruses and Opportunistic Infections (Croi).

Since 1993, groundbreaking HIV science has been presented here. 

Research that proved that a cocktail of three antiretroviral drugs could lower the amount of virus in someone’s body to virtually undetectable levels was revealed here in 1997, two years after the pandemic peaked in 1995 with 3.3-million new infections that year.

Croi also hosted the release of the first data that created hope that there could be a cure for the virus, and the game-changing research that showed putting someone on antiretroviral therapy as soon as possible after they had been diagnosed, worked better than starting treatment at a later stage.    

This year there were empty seats.

Missing from the conference were people working for US government agencies, such as the NIH, Centers for Disease Control & Prevention (CDC), and the US Agency for International Development (USAID), which funded much of the research presented. 

Over the past seven weeks, the Trump administration cut travel budgets and laid off hundreds of staff — including the heads of all of the agencies.    

Though some attended online, and the conference organisers imposed no restrictions on what researchers could and couldn’t say, some US government-funded presentations were retracted; others were redacted, had their titles changed, or the names of government authors removed, to adhere to the new doublespeak of the Trump era, say delegates. 

Left: HIV discoveries have been presented at the Croi conference for 32 years

Researchers who did make it to the venue often had to watch their language for fear of losing more funding. 

That meant avoiding words like bias, minorities, racism, equitable or sexual preferences. 

And being careful about how they framed their studies on groups of people Trump doesn’t like — or acknowledge.

Like transgender people.

On the night of Trump’s inauguration, on January 20, the president signed an executive order banning people’s right to identify as transgender or nonbinary individuals. There are only two genders, the executive order declared: male and female. 

In the world of HIV, that’s a train smash. 

Science shows some of these groups, particularly transgender women, have a much higher chance of contracting the virus than the general population and therefore need tailor-made health services.

“What you found in some cases was someone presenting a study about men who have sex with men that would have included, for example, people who are transgender,” explains Mitchell Warren from the New York-based advocacy organisation Avac. 

“Sixty-one days [ago] you might have seen ‘this study focused on gay men, other men who have sex with men, transgender women and men, and nonbinary individuals’. But now you’d see it saying ‘this is for sexually active people or men who have sex with men’. 

“People are very guarded right now.” 

But Beyrer, the director of the Duke Global Health Institute, isn’t one of them.

On stage, he’s ready for his plenary.

“I want to start with a few words that define the HIV response and our field,” he starts off. “Diversity. Equity. Inclusion.”

Trump weaponised these three words when he signed an executive order to end all diversity, equity and inclusion programmes in January.

“Diversity is in our DNA. It’s who we are. We can’t not address diversity, because we’re dealing with a diverse HIV pandemic,” Beyrer proclaims. “And the fact that three-quarters of all people living with HIV on this planet access antiretroviral therapy is the greatest achievement of equity in global health. We’re not going to give it up.”

Beyrer felt the impact of funding cuts first-hand. His partner worked for an organisation funded by Pepfar, the US government’s Aids fund, and has been furloughed. 

And he’s had to roll out austerity measures at his institute because the NIH, which funds more than three-quarters of biomedical research around the world, slashed the budgets grantees use to pay for overheads, known as indirect costs, from an average of 40% of a grant value to 15%, though it is facing legal challenges. 

Beyrer isn’t backing down. 

“The reality is that you can’t pick and choose which kinds of populations you care about and which you don’t in a pandemic,” he told Bhekisisa after his plenary. 

“You have to deal with everybody who’s affected. And you have to deal with those populations who have disproportionate burdens. 

“You don’t have a choice because that’s where the virus is. And whatever you think about transgender women, the fact is that they’re among the groups that have the highest risk and the highest prevalence for HIV.

“So they have to be part of service provision.”

Will the next generation of scientists be erased? 

At Yerba Buena Gardens, Franco Chevalier, a young doctor and researcher originally from the Dominican Republic, which shares the island of Hispaniola with Haiti in the Caribbean Sea, has taken the stage. 

In the audience, someone waved a poster saying “Fund HIV research, not cyber trucks”, referring to chief Trump fund-cutter Elon Musk’s electric Tesla trucks, which have a sticker price upwards of $80,000. 

“As an immigrant, I had to navigate a system that wasn’t always designed for people who looked like me and who had to endure the things I had to as a gay Afro-Latino,” Chevalier reveals.   

“But I found mentors, scientists who believed in me.”

Today, Chevalier is an internal medicine doctor and infectious diseases fellow at the University of California San Francisco, as well as a master of public health candidate at the University of California Berkeley. 

But he’s also the deputy medical director at the San Francisco City Clinic, where he helps to prevent new HIV infections among the Latino gay community, one of the groups with the highest chance of contracting the virus in the US.   

Chevalier looks up from his phone from which he’s reading his speech, and pauses.

“None of this would have been possible without the investment of the US government in research,” he warns.   

“Without proper funding we not only risk losing the entire next generation of scientists, which the cuts will disproportionately impact, but we run the danger of losing the resources that have kept millions alive and have prevented countless people from becoming infected in the first place.”

Each year, young scientists like Chevalier start the Croi conference with a workshop for new investigators and advocates; many of the more experienced scientists at the meeting have shaped at least part of their careers here. 

This year, Warren says, the most common question from attendees was: “I’m a 30-year-old postdoctoral student and thinking about a career in HIV. Do I have a future?”

Almost all of the academic positions for HIV research in the US, and also many in other countries, are funded by the NIH.

Now almost all of them are in danger.

“If a young researcher is wondering if they have a future in HIV research, and don’t join this field because of that, in 10, 20, 30 years they’re not going to have created the next big discoveries,” Warren cautions. 

“You have to create a constant cycle of new ideas, new investigators, new advocates, and that’s also being disrupted here.” 

Why PrEP studies had to shut down 

The consequences of research funding cuts have already been felt, explains Beyrer — many studies are on pause. 

One such trial is the Catalyst study — with six sites in South Africa — testing the best ways to roll out a daily anti-HIV pill, a two-monthly HIV prevention shot injection and a monthly vaginal ring.

What’s more, Science magazine reports health researchers who work in South Africa are on red alert after hearing last week the NIH could terminate all grants that fund work in the country.

HIV prevention medication, also called pre-exposure prophylaxis (PrEP), especially the daily pill and two-monthly jab — can lower people’s chances of getting HIV through sex to close to zero — but only if it’s taken as prescribed.

And that’s the most difficult part of the equation: just because there’s a pill, jab and ring doesn’t automatically mean people will use it.

So to get HIV-negative people who have a high chance of contracting the virus to take PrEP, researchers need to know which type of prevention different groups of people prefer and from where they feel most comfortable collecting it. 

Left: Tyler Termeer, CEO of the San Francisco Aids Foundation, speaking at a “Stand up against science” protest

The Catalyst study, funded by Pepfar through USAID, did exactly this. 

It was conducted across South Africa, Kenya, Lesotho, Uganda, and Zimbabwe, but when the Trump administration put a hold on foreign aid, all of those sites were stripped of their funding.

That meant two Joburg clinics — one for sex workers and another for transgender people — which were run by the Wits Reproductive Health Institute, which led the South African arm of the study, have been shut down.

The other four sites, hosted by government clinics in the Free State but funded by the US government, also closed. Though HIV services for which the government pays in the clinics are still running, the facilities can now only offer clients the daily pill, because the vaginal rings and two-monthly shots aren’t on the health department’s list of essential medicines, but were instead sponsored by the trial.   

“One of the reasons South Africa has done so well with HIV research is because of the extraordinary depth of scientific talent,” Beyrer says. 

“Now we’re worried about our international partnerships for collaborative research with countries like South Africa, and also China.”

For South Africa, Trump signed an additional executive order, banning all foreign aid to the country, which includes money used for research projects. HIV programmes in the country mostly operate with Pepfar money and get their funds either through USAID, which is hosted by the state department, or the CDC, which falls under the department of health and human services. 

Science magazine reports that a March 12 e-mail on behalf of the NIH’s acting director, Matthew Memoli, asked researchers at the NIH to compile lists of South Africa-related grants. “The e-mail instructed NIH’s institutes and centres to ‘please provide any information related to NIH investment in South Africa to [NIH’s executive secretary] by 5pm’.”

One of the lists, compiled by the National Institute of Allergy & Infectious Diseases, names 237 grants. Most involve HIV or TB research.

“Similar wording accompanied earlier NIH requests for information that led to the termination of dozens of grants involving transgender health, vaccine hesitancy and other topics the administration does not support,” Science reports.

Though projects — research, treatment and prevention programmes — funded through the CDC in South Africa are still running for now, following a court order, many organisations say they have only received budgets until the end of September. 

All projects that received their funds through USAID have been shut down or are in the process of closing down. 

HIV prevention research, Beyrer says, is unlikely to be funded by the US government in future. 

But he’s not giving up; Beyrer has faith in court proceedings taking their course.   

“I lost my first partner to Aids in 1991 when I was just finishing my medical training. Of a whole circle of guys in New York who were our friends, there are only two of us who survived,” he says.

“I’ve held on to those men and those losses my whole life. I’ve never given up, and I’m not going to now.” 

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.