David Furnish will never forget taking a HIV test in the 1980s. Back then, the virus that eventually leads to AIDS was still untreatable, and attitudes to those infected were overwhelmingly governed by fear and ignorance. The test couldn’t identify the virus itself, leaving doctors to infer patients’ status from the health of their immune system. To make matters worse, there was an agonizing wait of a couple of weeks for results. Fortunately, David’s test revealed no cause for concern. Traumatized by the experience, however, the young man went back into the closet and abstained from sex.
Today, the situation is much improved. Testing is straightforward and precise, with results typically available on the spot. Most importantly, the illness is now both preventable and treatable. A daily pill or an injection every other month can lower virus levels in the blood such that AIDS does not develop and HIV cannot be passed on. There are also treatments that prevent recipients from contracting the virus even when exposed to it and that suppress its effects in the immediate aftermath of exposure.
In the early days of the epidemic, it was incredibly bleak. A diagnosis was almost like a death sentence, says David, Chairman of the Elton John AIDS Foundation, the organization created by his husband, Sir Elton John.
Thanks to the advances in antiretroviral medicine, however, people with HIV can now live full, happy and productive lives.
An epidemic fueled by stigma
Despite significant medical progress, HIV/AIDS has not yet been eradicated. More than 37 million people worldwide are currently living with HIV, and it continues to spread. In 2020, there were around 1.5 million new infections globally, with over 680,000 people dying from AIDS-related illnesses. Contrary to misconceptions, the epidemic rages well beyond the Global South. Infection rates are on the rise in Eastern Europe and Central Asia even as they decline in the rest of the world.
For the past 30 years, the Elton John AIDS Foundation has worked tirelessly to put an end to the disease that has now claimed at least 38 million lives over some decades. (The true figure is likely higher owing to persistent under-recording.) Inspired partly by the bravery of Ryan White, a young boy who died of AIDS after a contaminated blood transfusion, Elton decided to commit himself to the struggle against this cruel blight on humanity.
I got sober in 1990 and began to reflect on my life, says Elton.
I realized that I hadn’t done enough, that I should have been at the forefront of the fight against AIDS. I had already lost so many friends to the disease at a time when I was hugely successful but personally unhappy and abusing drugs. Meeting Ryan and his family jolted me out of that. I vowed to make up for lost time in the fight against AIDS. I’m proud of what we’ve achieved and deeply committed to do more.
In its three decades since Elton committed himself to the cause, the foundation has played a transformational role. So far, it has raised more than $525 million to fund HIV/AIDS-related grants around the world, while leveraging another $350 million. These resources have helped support over 3,000 projects across some 90 nations. In total, the foundation estimates that its efforts have reached as many as 100 million people with education, prevention services, treatment, testing and support.
And yet there is much more to do. Prevention and treatment are simply not getting to all who need them. More than anything else, it is deeply negative attitudes that are frustrating the fight against AIDS.
As a disease, AIDS is caused by a virus, but AIDS as an epidemic is fueled by stigma, hate, ignorance, misinformation and indifference, says Elton.
Shame and stigma prevent people from getting help or protecting themselves in the first place. I felt that shame once and it almost killed me. And it continues to kill people all over the world right now.
As many as one in every seven HIV-positive people globally are thought to be unaware of their status. Some may feel reluctant to take a test despite knowing they are at greater risk. For others, it does not even occur to them that they might have been exposed to the virus.
Undetected HIV is a ticking timebomb, says David.
Early diagnosis is in everyone’s interests. It can prevent a person developing AIDS, prevent onward transmission and save huge treatment costs over a patient’s lifetime.
The critical importance of testing
The United Kingdom is among the countries to have achieved notable success in fighting HIV. Thanks to its public health system’s testing and therapy regime, it was one of the first to achieve the United Nations’
90-90-90 target, with 90% of HIV-positive individuals diagnosed, undergoing treatment and having undetectable viral loads. But even in this advanced economy, there are glaring gaps. The south London boroughs of Lambeth, Lewisham and Southwark have some of the highest rates of HIV in the country, including many undetected cases.
Having observed the stagnation of new diagnoses and the surge in late diagnoses during the mid-2010s, the Elton John AIDS Foundation stepped in.
Austerity measures following the Global Financial Crisis had left many healthcare budgets frozen, says David.
We identified the need and opportunity for a private investment solution to fund efforts in the public sphere in south London.
In 2018, the foundation launched a social impact bond, under which healthcare providers in the three boroughs would receive funds based on targeted outcomes. This first-of-its-kind scheme ran for three years. Not only were tests administered in the traditional surroundings of hospital emergency units, HIV clinics and doctors’ surgeries but also in various community spaces.
To boost testing rates, the scheme sought to change the conversation with south Londoners. Traditionally, healthcare providers had contacted people asking them to opt in to testing. In some cases, those invited would feel they were being profiled or judged. Under the foundation’s pilot project, however, people would be routinely tested whenever they had blood drawn at the doctor’s surgery or a hospital for any reason, unless they asked not to be.
In just over three years, over 260,000 tests were conducted, identifying more than 200 new cases of HIV among south Londoners. The scheme also persuaded some 250 lapsed patients to resume treatment. Many of the cases identified were among residents identifying as heterosexual and from the black community. They included individuals in their fifties and sixties, with a few who were even older. But for the scheme, many would not have received a test. Following diagnosis, trusted community organizations would intervene to encourage patients to enter specialist treatment.
It’s public healthcare 101: if you want to know where the problem is and deal with it effectively, you start by testing.
The project underlines the critical importance of testing, says David.
It’s public healthcare 101: if you want to know where the problem is and deal with it effectively, you start by testing. We invested £1.7 million ($2.1m) in the project and the discovery of undetected cases generated some £90 million of long-term savings for the healthcare system. Based on the project’s results in south London, the authorities picked it up and are expanding it all over England.
Empowering marginalized groups
While HIV/AIDS is a global issue, the characteristics of the epidemic vary from place to place. In every instance, though, stigmatization and marginalization of those infected are prominent. During the social and economic dislocation that followed the Soviet Union’s collapse, Ukraine experienced a huge increase in HIV cases from the late 1990s, initially concentrated among drug users and sex workers. The country’s response to ballooning case rates was severely hindered not only by chronic underfunding and corruption in its healthcare system but also by attitudes, including the harsh criminalization of drug users.
Amid these challenging conditions, the foundation chose to back an initiative led by a tiny collective of former drug users, the All-Ukrainian Network of People Living with HIV. While this group initially lacked a clear structure of operations, the foundation’s funding helped it transform into a formal, membership-based organization. Driven by people with a lived experience of having HIV – and of the stigma faced – the network grew to become the nation’s largest of its kind.
Among its many achievements are securing better antiretroviral treatment at lower prices, promoting civil advocacy in combating healthcare corruption and enhancing inclusion for infected prisoners and ex-prisoners. Today, the organization – now called 100% Life – regularly works with 90,000 HIV patients, even amid severe challenges from the war with Russia.
I hate the fact that anyone is marginalized because of what they believe, what color they are or who they love.
To increase awareness and understanding around HIV, Elton staged a free concert in Kyev’s iconic Maidan Square in 2007. Attended by 300,000 people – including the president and other political leaders – the open-air spectacle was also broadcast live on national television, delivering the message of
Stop AIDS before it stops us. Free condoms and pamphlets about testing and advice were distributed to the vast crowds. Despite the hugely positive publicity generated, a religious group provided a stark reminder of the enormity of the challenge, urging a boycott of the show on the grounds that it was
promoted a homosexual lifestyle.
I hate the fact that anyone is marginalized because of what they believe, what color they are or who they love, says Elton.
We need to convince people to be kinder to each other and to be more humane. If you try and encourage people, help them, you will get better results than ignoring them, which leaves them angrier and more forlorn. We must fight for the rights and the dignity of the marginalized everywhere and never let these people go.
Marginalization creates health risks that go well beyond HIV/AIDS. The COVID pandemic was a prime example of this, with many marginalized groups worldwide experiencing worse outcomes than the wider population. Ensuring such people are not left behind when it comes to HIV/AIDS could also enable them to be better included in health services when it comes to other conditions.
Homophobia and resulting discrimination remain highly destructive forces within the HIV epidemic. They are prevalent at multiple levels, from within families and communities up to governments. Numerous studies have revealed that the stigmatization of gay relations hinder people from engaging in HIV prevention, undertaking testing and seeking treatment if infected. Those fearing stigmatization or having endured past discrimination are also likelier to experience stress, depression and suicidal tendencies.
Eradicating stigmatization is thus critical to ending the epidemic. In South Africa, where almost one in seven of the population is living with HIV, the foundation supported the first ever nationwide campaign specifically addressing gay men and other men who have sex with men. Spearheaded by a local organization called We The Brave, the initiative highlights prevention and treatment issues in affirming, non-judgmental and sex-positive ways. It promotes safe sex and regular testing and connects people to preexposure prophylaxis and HIV treatment.
The world has the tools to end AIDS, says Elton.
But persistent stigma surrounding HIV is now the main source of transmission. Hate crimes, politically sanctioned exclusion and punishment, and social marginalization are just some of the barriers that keep people from accessing the care they desperately need. And those barriers are growing.
In response, the foundation is launching a new $125 million global campaign. The Rocket Fund seeks to tackle rising levels of stigmatization, marginalization and poverty that combine to produce high rates of HIV and low access to healthcare. It will focus upon the most HIV-vulnerable groups globally: LGBTQ+ populations, people who use drugs and young people.
The greatest healer is kindness
As well as enhancing access to testing, prevention and treatment, promoting human rights is at the heart of the Rocket Fund’s agenda.
We’re committed to combatting punitive, judgmental attitudes and laws targeting HIV – and the groups most vulnerable to them, says David.
Nearly a third of global nations classify LGBTQ+ people as criminals. And in 13 countries, homosexuality is punishable by death. We are investing in advocacy to empower LGBTQ+ communities to be heard and seen wherever their rights are threatened.
Likewise, the threat of violence, abuse and incarceration from the authorities keeps many drug users globally from seeking healthcare. The Rocket Fund is thus seeking to expand non-judgmental programs that address HIV, opioid use, unclean needles and overdoses.
We’re also pressing the case for a reallocation of funding away from criminalization of people who use drugs and toward services that benefit public health, says David.
This emphasis on fresh, evidence-based thinking goes hand in hand with the Rocket Fund’s support for other innovations in the fight against HIV. In Kenya, for example, it will extend the foundation’s backing for a scheme that enables young people to use their phones to order drone deliveries of vital medical supplies. In South Africa, it is partnering with a local app developer to create confidential forums for young people to discuss sensitive sexual and reproductive health issues.
We are investing in advocacy to empower LGBTQ+ communities to be heard and seen wherever their rights are threatened.
The greatest healer is kindness, says David.
Our ambition is to get rid of this disease by 2030, and the key to that is love and compassion for the billions of people who aren’t safe, respected and free. They live all around the world, from its remotest reaches to the sidewalks next to us. It’s on us to make their world and ours a better and more equal place.
I shouldn’t be here today, says Elton.
I should have contracted HIV in the 1980s and died of AIDS in the 1990s. I don’t know how I survived, but I do know why I am still here: to deliver the message that saved my life and the message that can save millions of lives if we put it into practice. No matter who you are or who you love, no matter what you have or haven’t done, everyone deserves compassion, dignity and love.