This article is part of Telescope: The New AIDS Epidemic, a deep-dive investigation into the modern face of a disease that transformed the world.
As medical breakthroughs allow more and more people to grow old with AIDS, the virus has — in many circles — become old news.
Few organizations know this better than the Austrian charity Diversity Care Vienna. Since its founding in 1999, the unassuming NGO — which provides home nursing to AIDS patients in Vienna — could count on a donation of around €100,000 a year via Austria’s Life Ball, a glitzy, raunchy gala to raise cash for the fight against HIV. It was, until recently, the biggest charity event for the cause in Europe. Bill Clinton was a regular, as were Elton John and designers like Jean Paul Gaultier and Vivienne Westwood.
Yet in 2016, the check dropped to €75,000. In 2017, it was down to €50,000, and then €25,000 in 2018. That turned out to be its parting gift. Last year, Life Ball’s organizers announced that 2019 would be the final party, after 26 years, leaving Diversity Care deep in the red, hanging on largely thanks to the help from the city.
“AIDS has changed from a death sentence to being a chronic disease,” said Life Ball founder Gery Keszler, explaining his decision to shut it down last year. “The paradox of this success is that the number of allies for AIDS charity projects is decreasing both at home and abroad.”
Diversity Care’s travails are representative of the new challenge facing organizations around the world fighting AIDS.
The Global Fund to Fight AIDS, Tuberculosis and Malaria estimates a 30 percent shortfall in what’s needed to respond to HIV in poor countries this year — not even taking into account COVID-19, which is straining national budgets.
Donations for the global fight against HIV from wealthy countries were down $200 million in 2019 compared to the previous year, and cash from rich countries other than the U.S. has been slumping ever since it peaked in 2014.
And it’s not just money, but activism, too. Red ribbons — the symbol of the fight against AIDS — are at risk of becoming passé, as a younger generation devotes itself to green issues and Black Lives Matter.
“Fundamentally, it’s just not as sexy,” said Robin Gorna, a longtime AIDS activist whose career evolved from protesting on the streets of London in the 1980s to running the International AIDS Society in 2010.
It didn’t used to be this way
In the West, HIV strikes hardest among those who are already taking a beating from society: LGBTQ people, sex workers, drug users. There’s no vaccine, and no cure.
And yet, the virus’ early victims built a movement that became the envy of the patient world — a model for how people fighting a disease can also fight for better treatment.
Gay men in San Francisco, New York and London may have faced severe stigma, but they were often well educated, wealthy and wise to the ways of politics and pop culture. (Larry Kramer, the notorious founder of ACT UP who died earlier this year, was an award-winning, Yale-educated screenwriter whose scripts and investments made him a millionaire, for example.)
Gorna, an idealistic feminist at Oxford in 1986, said she was swept up in the “vibrancy and cheekiness and rage of these extraordinary gay men who were basically fighting for their lives.”
“It seems awful to say fun,” she added. “But it was fun.”
In the late 1980s, Keith Haring’s pop art put tolerance on T-shirts. Princess Diana shook hands — sans gloves — with a dying man at the opening of the U.K.’s first dedicated AIDS ward in 1987. In 1992, the Freddie Mercury AIDS Awareness Tribute Concert introduced the red ribbon symbol to a billion people watching on TV.
Soon, world leaders were paying attention. In 1996, UNAIDS became the first U.N. organization devoted to a specific disease — and it’s still the only one. The U.N. Security Council recognized AIDS as a global threat in 2000. In 2003, then U.S. President George W. Bush, a staunch social conservative, launched PEPFAR, which helped deliver antiretroviral HIV medication to millions in Africa. The program is the largest commitment by any nation to fight a single disease in history, according to the Kaiser Family Foundation.
The inflection point — the moment the tide started to recede — was the result of a stream of quiet medical breakthroughs in the mid 2000s. A new generation of antiretrovirals are increasingly tolerable for people to take every day — gone are the 22-pill regimens — allowing them to live with HIV into old age without debilitating side effects.
The implications of the good news were just sinking in when the 2008 financial crisis blew holes in government budgets across the world. Both were bad news for HIV fundraising.
“It’s become much more of a challenge, because the perception is that HIV and AIDS is over,” said Anne Aslett, CEO of the Elton John AIDS Foundation. “There is a long pattern of creating huge amounts of awareness for a specific issue, but moving on before the job’s done.”
Indeed, things aren’t on track. The U.N. had set 2020 as the year the world was supposed to meet the so-called 90-90-90 goals: 90 percent of HIV positive people diagnosed; 90 of those on treatment; and 90 percent of those virally suppressed (meaning they can’t pass the virus on to others).
Mathematically, achieving that goal would work out to 73 percent of people living with HIV having successfully suppressed the virus. But at the end of 2019, that figure was just 59 percent, according to UNAIDS, and disruptions from the coronavirus pandemic could wipe out progress.
Not only is the fight far from over. Globally, progress has pretty much ground to a halt. In 2018, 1.7 million people were infected with HIV — and that number stayed the same in 2019, according to the Global Fund.
Funding, too, has stagnated. The total contribution from wealthy nations to low- and middle-income countries is about the same in 2019 as it was a decade ago, according to the Kaiser Family Foundation, even though the number of people living with HIV in poorer countries has increased by 25 percent. More people surviving with the virus means more people needing financial and medical assistance.
“Because there’s no cure, there’s no vaccine, the only way to really keep addressing HIV in a significant way is to get as many people as possible on antiretroviral therapy,” said Jen Kates, Kaiser’s Director of Global Health & HIV Policy. “It requires a significant sustained effort for a long, long period of time.”
In the West, antiretrovirals taken as pre-exposure prophylaxis (PrEP) provides another reason for complacency. Capable of preventing people from contracting HIV, these are widely available and reimbursed in countries like France, the U.K. and Germany, where they are targeted primarily at men who have sex with other men.
“Out of sight, out of mind,” said MEP Nicolae Ștefănuță, who bluntly acknowledged during a POLITICO event last week that HIV isn’t on the radar in the European Parliament. His native Romania doesn’t have a PrEP program.
Broadening the appeal
With the urgency largely gone, as the original generation of activists grow older, they’re struggling to pass the torch. There aren’t young people lining up to take it.
It’s not hard to see similarities between ACT UP and the climate activist group Extinction Rebellion, with their die-ins, confrontations with politicians and other disruptive protests. But the HIV movement has aged out of those types of tactics, Gorna said, in part because they aren’t relevant to what’s needed today.
“Now, the kind of activism that’s needed is much more complex, and it’s much less emotionally charged,” she said.
“It’s much easier to toyi-toyi in the street and demand your drugs than get into a complex conversation about procurement systems and training of health care workers and monitoring service delivery,” she added, referencing the South African style of street protest.
And older activists aren’t always welcome to new ways of thinking, Gorna said. For example, sexism and homophobia are still animating issues, but they look different from how they did in the 1980s. Today’s LGBTQ vanguard embraces a view of gender fluidity that’s sometimes a bridge too far for radicals of another era.
“What we’re not always doing is understanding where young people’s rage is directly located at the moment,” Gorna said. “It takes some humility by older activists to say, ‘Okay, their world’s different. We did the bit in our world. We did well enough.’”
Increasingly, the route to keeping AIDS charities relevant is to talk less specifically about AIDS.
When the Terrence Higgins Trust, the U.K.’s oldest AIDS charity, hired Alison McCants to work on fundraising in January, she was supposed to help with a big new push. The sector has a “growing reliance” on cash from donors rather than government appropriations, noted THT’s annual report for 2018. It flagged “large cuts to public sector funding” as a threat that’s likely to continue.
So then comes the fundraising conundrum: Few cities have been more successful at stifling HIV transmission than London, and like other NGOs, “we’re victims of our own success,” McCants said.
That was, of course, before COVID-19 made things even harder. The economic shock put pressure on donors’ pocketbooks. Social distancing led to canceled charity events. With a predicted 40 percent cut in non-government donations for its AIDS efforts, the trust is pivoting from an “ambitious growth strategy to damage control,” said McCants.
Before the pandemic, the trust ran a series of focus groups seeking to understand what motivated their core supporters, who fall into three broad categories.
One is, of course, the gay men over 45 who lived through the crisis — and likely lost friends and lovers.
Another group is women in their mid-30s to mid-50s, worried about complacency in younger generations, including their own kids who are reaching sexual maturity — and as they, in many cases, dive back into the dating scene themselves, McCants said.
The third and youngest target group, LGBTQ adults ages 25 to 45, seemed the least interested in straightforward messages about HIV. Their relationship with HIV is “a step removed” from other LGBTQ issues, although they still see the disease as important from a “community or identity perspective,” McCants said. Accordingly, fighting stigma is a priority.
They’re more interested in intersectionality, which refers to the compounding challenges facing people marginalized not just because of HIV but because of gender identity, race or socio-economic status. A human rights message emphasizing not just access to treatment, but also mental and sexual health, resonates.
The trust is also eyeing messaging about preventing sexually transmitted infections more broadly. Those include gonorrhea, for which rates were up 26 percent last year, according to Public Health England.
At the more glamorous end of the AIDS fundraising world, Elton John has yet to run into trouble recruiting A-listers for his celebrity fundraisers, according to Aslett, the CEO of the singer’s foundation. Yet its fundraising heavily depends on the man at the top: The foundation’s 2019 report noted that John’s decreased availability for events caused a drop in revenue.
But Aslett also acknowledged it’s harder to ask for money now that fewer donors have personal connections with HIV. And so the foundation is increasingly pooling resources with government agencies, like the U.K.’s Department for International Development and PEPFAR, to directly run programs in sub-Saharan Africa.
The foundation is also trying to get more creative about financing. Through a so-called social impact bond in South London, they invited deep-pocketed players to pitch into an experimental program that aimed to find people with undiagnosed HIV and connect them to care. The idea was that the investors get paid back if the project is successful. And with 120,000 tests resulting in 114 new diagnoses and 64 people who had dropped out of treatment getting back on track, the first round was declared a success in July.
ViiV Healthcare, one of just a few major developers of HIV drugs, was among the investors on that project, and Aslett predicts the foundation will work more with the commercial sector going forward. She points to a $25 million initiative in Eastern Europe and Central Asia with Gilead (the advertiser presenting Telescope: The New AIDS Epidemic), which awards grants to local programs fighting the disease in a region where HIV-related deaths have increased by 300 percent over the last 20 years.
“Some of these problems are just too complex and too expensive to be dealt with just through the public sector,” Aslett said.
Like the Terrence Higgins Trust, the Elton John Foundation is drawing in younger celebrities by focusing on mental and sexual health more broadly.
“And once you start to do that, that absolutely resonates with high profile people in their 20s,” Aslett said. “It’s a very different thing from saying ‘Will you talk about HIV?’ to ‘Will you talk about healthy sexual relationships and things that you need to protect yourself?’”
With public health attention focused on the coronavirus, the fight against HIV risks going from being a victim of its own success to simply a victim. Global health organizations warn that a decade of progress could be slashed by service disruptions and budget cuts.
AIDS organizations are trying to cope by riding the coattails of the virus in the headlines. UNAIDS, for example, is leading the charge for a “people’s vaccine,” citing a desire to avoid a repeat of early AIDS treatments that were available in rich countries long before anyone else could afford them.
“These are colliding pandemics,” said Shannon Hader, a UNAIDS deputy executive director, at the POLITICO event last week.
“It allows us also to remind people what’s left to do,” she added. “A lot of the folks that are still left to be reached in the HIV response … they’re not being reached in the COVID response, either.”
Correction: This article has been updated to correct the spelling of the name of the CEO of the Elton John AIDS Foundation. It is Anne Aslett.