Early 1981 marked the first reported cases in Los Angeles, New York and San Francisco of patients exhibiting strange symptoms due to compromised immune functions. By the end of that year, there were 234 known deaths in the US due to this new disease, a number that would increase almost exponentially every year to reach a peak in the US in 1995 of just over 48,000 and globally in 2005-2006 with nearly two million deaths in each of those years. After four decades, at least 32 million lives have been lost to AIDS and 38 million people are currently living with HIV.
While no safe and effective vaccine or cure has yet been found, however, HIV is no longer a death sentence. Antiretroviral therapy (ART) emerged in 1996, leading rapidly to rising survival rates – at least in high-income countries where they were available. The next seven years marked the height of the AIDS crisis with loss of life concentrated in low- and middle-income countries and particularly sub-Saharan Africa, which accounted for around three-quarters of overall HIV-related deaths and two-thirds of cases.
This gross inequity was eventually addressed with the foundation – with no small help from activists – of The Global Fund to Fight AIDS, Tuberculosis and Malaria in 2002 and the creation of the US President's Emergency Plan for AIDS Relief (PEPFAR) in 2003. Not only were billions invested in fighting AIDS, the cost for treatment dropped dramatically – from USD 22,000 in the US and Europe to eventually reach around USD 50 in LMICs. AIDS-related deaths have dropped by 64% since 2004 and by 47% since 2010.
It is not all about survival, however. In addition to searching for a vaccine and cure as well as addressing issues of equity in care, the HIV/AIDS epidemic has been marked also by issues of injustice and discrimination – the first description of the disease in 1981 was “Gay-Related Immune Deficiency”. Pervasive stigma is still sadly relevant today.
In the interview below, Birgit Poniatowski, Executive Director of the International AIDS Society, speaks to UICC about how the fight against AIDS has been led in the past 40 years, the many issues that still need to be addressed, such as lack of equity in access to care and discrimination, the importance of following the science and the synergies that can be created between the cancer and HIV communities.
What significance does this 40th year since the first description of AIDS hold for the AIDS movement?
COVID-19 has driven home the point that it takes a lot of collaboration and investment to get a grip on an epidemic and that’s true for HIV. It has also driven home the point that we need to follow the science for a successful public health response.
We now have many prevention and treatment options available in our toolbox and we can achieve the 2030 target of ending AIDS as a public health epidemic but it won't happen without science, policy and activism forming an evidence-based and global HIV response. Furthermore, while people can now live normal lives with HIV thanks to treatment, it remains a lifelong challenge, so we still need prevention and cure.
The HIV virus is complicated. It is very good at hiding itself and, so far, we haven’t found the right way to attack it. Science is progressing, however, and we are hopeful that we will hear some preliminary signals this year with a vaccine currently in phase III trials. Though we have to be careful – if these trials are not conclusive, it could be a while before we see anything new emerge.
The IAS marks this anniversary by having launched “HIV Unmuted – the IAS Podcast” where we shine a spotlight on past, current and future challenges.
What are some of the milestones of the past 40 years?
The fact that an AIDS diagnosis is no longer a death sentence is definitely the major milestone. Ever since 1996 when data was presented on the efficacy of combination therapy and those medications began being distributed, AIDS-related deaths have been dropping. In the wealthy countries, of course, but thanks to the Global Fund and work by activists, also in limited resourced settings, where we have seen significant investment in the HIV response, not just by bilateral or multilateral donors but also by national governments. And prices have come down through purchasing mechanisms and licensing agreements.
But there are still many people living with HIV who are not on treatment. Also, many people have difficulties accessing treatment and some healthcare systems face challenges keeping people on treatment, so we are looking to develop new treatments with reduced protocols that could significantly limit the number of necessary consultations and offer the opportunity to send medication to communities. This would allow us to reach populations in rural areas.
A key milestone was the realisation that science, policy and those living with and most affected by HIV need to be in constant contact and form a common, evidence-based front to the epidemic.
What are some of the other current challenges you face?
There is an awareness gap about AIDS and this can be due to where people live. In many places where HIV is no longer a death sentence, awareness has actually gone down among younger generations. We see some worrying infection rates among younger key populations and that has something to do with it.
Stigma and discrimination remain attached to the HIV epidemic. It’s not only that people judge the lifestyle of those who are infected, not just with respect to sexual orientation or practices, but also because men who have sex with men, people who inject drugs, sex workers and transgender people have a heightened vulnerability to HIV acquisition. For an individual living with or vulnerable to HIV, stigma can result in a reluctance to get treatment or take preventive actions. Empowering people to overcome stigma and discrimination remains one of our primary objectives. The other two overarching goals are the promotion of science and supporting action and policies in view of scientific evidence.
How did the AIDS movement get organised to fundraise and advocate effectively?
The cross-fertilization between sustained and loud activism, scientific research and the policy community has revealed itself central to advocacy efforts. The International AIDS Conference convenes, since the 1980s, people from these diverse backgrounds every two years with the explicit aim to provide a platform for both science and advocacy, to get their message out and garner support for their work.
In the 1980s, there was a great urgency for people living or infected with HIV to do something about this new disease affecting more and more people. They also realised that they needed to understand the science so they could be very specific in what they were advocating for. This support for the scientists’ work favoured more investment in research.
The HIV/AIDS movement has thrived on this respect and close collaboration, not only between the people affected by the epidemic and those researching it but also with policymakers and those making investment decisions. What the IAS has always been intimately involved in is science literacy, to support people in having access to latest evidence to make informed demands for the next steps in service delivery.
How can the AIDS and cancer communities collaborate for mutual benefit, for instance combining outreach efforts for AIDS prevention and HPV vaccines and cervical cancer screening?
There is definitely space and a need to collaborate around service provision integration and messaging on prevention and vaccination. Infrastructures put in place as part of HIV prevention can be used to reach out to similar populations for cancer screening [ed. note: Women living with HIV are six times more likely to develop cervical cancer than women without HIV infection]. Both communities must also continue to follow the science and share scientific advances that may benefit both HIV and cancer, particularly in the search for a cure.
What lessons do you think the cancer community can learn from this moving forward in terms of raising awareness and encouraging governments to increase funding for cancer control?
I think it’s mobilising the people who are affected, providing space for people to express themselves and interact with the other stakeholders in the cancer response. At IAS conferences and increasingly at scientific conferences, we make room for activism, we facilitate this. It reinvigorates the sense of purpose in science. There need to be fewer barriers and more interaction between scientists, policymakers and activists. And we must be unwavering in continuing to innovate and follow the science of tomorrow.