No ‘4th 90’ — Why living well is not a goal when it comes to HIV

This is a POLITICO case study, a look at what works — and what doesn’t  — in the fight against HIV. The article is part of Telescope: The New AIDS Epidemic, a deep-dive investigation into the modern face of a disease that transformed the world.

THE BIG PROBLEM

Treating people for HIV means they can’t pass the virus on to others, and they can expect to live a normal life — sort of. Turns out suppressing the HIV virus doesn’t mean eliminating all the other challenges that come with living with what is essentially a chronic condition, and a heavily stigmatized one at that. People with HIV are living longer, but not necessarily living well.

THE BIG IDEA

Create awareness and political accountability for the overall health of people living with HIV by beefing up existing global targets with a new benchmark: the so-called “4th 90.”

UNAIDS’ last global strategy for fighting the epidemic, adopted in 2015, set ambitious targets, known as 90-90-90. The goal: By 2020, 90 percent of people living with HIV will know their status; 90 percent of those will be on treatment; and 90 percent of that group will be virally suppressed. 

The “4th 90” would add another goal: that 90 percent of those with viral suppression would have a good health-related quality of life.

WHY IT MATTERS

HIV used to be a death sentence, with an inevitable cause: AIDS. Antiretroviral drugs now mean that outcome can be prevented — but now there are lots of other problems to worry about.

People growing older with HIV face many of the same health problems lots of older people face. However things like kidney problems appear to occur with significantly greater frequency for HIV-positive patients than they do in the general population. Meanwhile, people living with HIV report diabetes, hypertension and high cholesterol more today than they did in the past. 

On top of that, there are signs that premature aging may be a consequence of HIV-positive status. That idea is still up for debate, but it does mean some of those old-age problems, including cancer and dementia, may kick in earlier.

Even in places with great HIV specialists, patients may struggle to get help with all their non-HIV related medical issues. Stigma by health care professionals remains a major issue, and the fear of being judged or treated differently can prompt people to put off dental checkups, cancer screenings and other care. Even if the situation isn’t that bad, a lack of knowledge about HIV can lead GPs and other specialists to make bad calls.

A chronic health challenge and social stigma is a pretty toxic mix for mental health, too. A 2019 study estimated that 31 percent of people living with HIV globally have moderate to severe depression — though that figure was lower in Europe, at just 22 percent. 

Jane Anderson, a British HIV doctor focused on the epidemic from almost its earliest days, has seen patients’ needs evolve first hand. The U.K. is a global leader in providing antiretroviral therapy. Yet Anderson saw people who had the virus under control, but were still far from well. 

IN THEIR VOICES 

Jane Anderson, consultant physician at Homerton University Hospital NHS Foundation Trust in London, on how her practice informed her broad view of HIV care:

DATA COLLECTION: Making matters worse, data collection on these issues has been spotty, whether that’s asking people with HIV about their experience of stigma, or tracking their ultimate cause of death. 

The European Centre for Disease Prevention and Control has ramped up steadily in recent years, with countries collecting solid figures for the 90-90-90 targets and, increasingly, on the number of people taking pre-exposure prophylaxis (antiviral medicines that protect uninfected people from HIV). 

But when it comes to statistics on stigma, it turns out it’s hard to even find out who’s trying and who’s not. When the ECDC asked 55 countries in Europe and Central Asia whether they collected data about perceived discrimination against people with HIV, only 40 percent even bothered to answer the question. Just six countries responded that they do indeed collect data on stigma broadly, and only four track stigma in health care settings.

IN THEIR VOICES 

Teymur Noori, an HIV and monitoring expert at the ECDC, on the stigma data gap:

HOW THEY DID IT

The paper: A 2016 paper called for a new paradigm in the spectrum of HIV care: “beyond viral suppression.” Spearheaded by researcher and advocate Jeffrey Lazarus, the paper in the journal BMC Medicine called for a “fourth 90” target focused on health-related quality of life. That includes comorbidities and self-perceived quality of life.  

The paper caused a stir. Lazarus started getting thank-you letters. 

IN THEIR VOICES 

Jeffrey Lazarus, professor at the Barcelona Institute for Global Health, on the reaction to the “4th 90” proposal”:

Not everyone agreed with the “4th 90” as originally envisioned. Why limit it just to people who are virally suppressed, Lazarus heard at the Glasgow HIV Drug Therapy Conference? So they broadened the idea, proposing that the 4th 90 apply to everyone with HIV.

The adjustments: A reality check came when Lazarus spoke at an International AIDS Society Conference. In a room of 500 people, he asked people to raise their hands if they really know why people living with HIV are admitted to hospitals. Only a few hands went up, Lazarus recalled.

Long-term studies of people with HIV give us some sense of the diseases that often go hand-in-hand with the virus. Yet health systems aren’t actually tracking that in real time. While some of the major humanitarian programs like PEPFAR track common coinfections, like tuberculosis or hepatitis, no one has really looked at chronic conditions like cardiovascular problems, chronic kidney disease, osteoporosis — or depression. Data collection became a new imperative.

Indeed, the more momentum the 4th 90 effort seemed to build, the more elements people wanted it to encompass. That made the task of measuring more and more complicated. 

One of these things is not like the other: The other 90-90-90 goals are pretty straightforward. Either people are diagnosed, or they’re not. Either they’re taking pills, or they’re not. Either their viral levels are detectable, or they’re not. The yes-or-no answers apply no matter where you live, and these goals can primarily be fulfilled by the health sector. 

The 4th 90 effort drove a lot of new research, including a splashy special report in the prestigious Lancet medical journal. But the articles only showed how complicated health-related quality of life is, with factors varying from the physical (diseases or lack thereof), psychological (mental health) and political (stigma). 

HOW IT WENT

Ultimately, the 4th 90 was not to be.

A final draft of the new UNAIDS strategy is set to be approved by a board of government representatives, NGOs and patient groups in the coming days. For 2025, it sets the targets at 95-95-95. (And no, there’s no 4th 95.)

Those three targets have some pretty intense modeling behind them, and are designed to guide countries toward the 2030 Sustainable Development Goal. A fourth, more diffuse measure, was never really under consideration by UNAIDS. 

That said, there are some partial successes for the “4th 90” campaign. The new strategy doesn’t use a fourth “90” target, but it does aspire to see “less than 10 percent” of people living with HIV or in vulnerable groups experience stigma and discrimination,” a benchmark with obvious implications for the health care sector. It also puts more focus on integrating other health and non-health services, a way that could help improve prevention and treatment of non-HIV conditions. 

The third 95 also implies the ambitions of that “4th 90,” noted Vinay Saldanha, an adviser to the UNAIDS chief in charge of strategy. If people are on treatment (the second 95) but not achieving viral suppression (the third), chances are there’s another health issue holding them back.

Another factor, perhaps an ironic one: Non-medical issues (like migration status) may be just as important — if not more so — than medical concerns, when it comes to dealing with an individual’s HIV care: 

IN THEIR VOICES 

Vinay Saldanha, special adviser to the executive director of UNAIDS, on how social factors can directly affect HIV care:

Still in the game: Even if it’s not enshrined in the strategy, the 4th 90 movement has left a lasting mark. HIV Outcomes — a group formed by Anderson, Lazarus and the patient advocate Nikos Dedes in 2016 to focus on medical issues beyond viral suppression — is hosting workshops with UNAIDS to hash out a common definition of “health-related quality of life.” EU countries are telling the ECDC they want help monitoring how people are doing even after viral suppression.

IN THEIR VOICES 

Noori on the impact of the 4th 90 proposal:

THE TAKEAWAYS

Riding the coattails of a flashy global target is an effective way to drive the conversation about a neglected issue.

The problem comes when the coat changes. Anderson and Lazarus are torn about whether to keep referring to the idea of “health related quality of life” (a mouthful with an awkward acronym: HRQoL) as the “4th 90.” On the one hand, it doesn’t technically mean anything anymore. On the other, it’s a shorthand that still resonates.

IN THEIR VOICES 

Anderson on what the 4th 90 means going forward:

Whatever it’s called, it’s likely to stick around. Lazarus is leading a project in Spain to implement the 4th 90 (or as he’s reformulating it, “Living long and well”). In the U.K., Public Health England’s Positive Voices survey features questions that the HIV community has said are important. The ECDC is also working to develop a set of 10 questions, working with advocacy groups, to capture so-called patient-reported outcomes in a way that would be comparable across Europe.

Audio production by Cristina Gonzalez.