News24 | Fund research not Tesla trucks: The HIV casualties of Trump's war on science

• This year there were empty seats at the prestigious Conference on Retroviruses and Opportunistic Infections, Croi, in San Francisco, where groundbreaking HIV research gets presented.
• Missing from the conference: people working for US government agencies, such as the National Institutes of Health, Centres for Disease Control and Prevention and the United States Agency for International Development, that 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. 

In Yerba Buena Gardens, two blocks of public parks and playgrounds in San Francisco's downtown art district, Mark Harrington rallies the 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 United States Aids activist organisation, ACT UP. He co-led the "seize control of the Food and Drug Administration" (the FDA, the US's medicines regulator) in 1988 and the "storm the National Institutes of Health" (the NIH, America’s medical research agency) demonstration in 1990, which pressured both agencies to prioritise HIV.

But last week, he was at a crossroads again, surrounded by people holding posters with four decades’ 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 infections rates.

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

READ | 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." 

'You can’t pick and choose which populations you care about in pandemics'

A few hundred metres away, over 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 (ARV) 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 (ART) 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: people working for US government agencies, such as the NIH, Centres for Disease Control and Prevention (CDC) and the United States Agency for International Development (USAID) that 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.   

Although 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. 

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

That meant no words like bias, minorities, racism, equitable or sexual preferences.

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

Like transgender people. 

On the night of his inauguration, on January 20, the president signed an executive order banning people’s right to identify as transgender or non-binary 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 [before] you might have seen this study focused on gay men, other men who have sex with men, transgender women and men and non-binary 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."

Donald 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’s 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%, although it is facing legal challenges. 

READ | How two women are changing the way trans women are treated

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 waves a poster saying "Fund HIV research, not cyber trucks", referring to President Trump’s chief fundcutter, Elon Musk, electric Tesla trucks with a sticker price upwards of $80 000 (R1.46 million) that Americans stream along California’s highways.

"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 masters 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 United States.  

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 were: "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 United States, 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 is 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 or 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 different groups of people prefer and from where they feel most comfortable collecting it. 

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 Johannesburg 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. Although 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 shopping 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."