To mark World AIDS Day, Professor Sarah Fidler from the Department of Infectious Disease, and student, Jonas Bergmann from the University of Amsterdam, reflect on the evolution of HIV treatment and the ongoing challenges. They discuss the impact of stigma, the importance of accessible medication, and the role of community-led initiatives in supporting those living with HIV.
Professor Sarah Fidler
My first experience of HIV was in 1988 when I was 24 years old. I had just qualified as a junior doctor. As I started work on the respiratory ward, there were several young people who were inpatients. This was unusual for an acute medical ward, which treats patients with urgent medical conditions. Our patients were a similar age to me, but these young people – who should have had their whole lives ahead of them were isolated, sick and dying.
Not only were they dying, but they were dying with a health condition that also affected their partners, all while facing fear, judgement and stigmatisation. As a result, many had no family with them to help ease their passing – just prejudice, homophobia and ignorance. We had no medicines that could reverse the medical complications, nothing that could make them better. All we could do was to care for them as best we could, providing empathy, kindness and medical support to ease their journey.
Towards a cure: Breathroughs and ongoing research
Fast forward to today; 2024. To date, an estimated 88 million people globally have acquired HIV since the part of the COVID-19 pandemic, and 42 million people have died. But we now have safe, effective and affordable medicines that have transformed survival for people with HIV. HIV medicines (antiretroviral therapy- ART) are delivered to 30 out of the 40 million people living with HIV globally, the vast majority of whom are living in Southern and Eastern Africa, some of the least economically developed countries of the world. Thanks to international agencies, governments, industry partners and charitable foundations, novel interventions have been developed to enhance medical access and strengthen resilience in communities disproportionately affected by HIV/AIDS today. Local community-led campaigns have evolved into global networks, supporting health systems strengthening, promoting health equity, and improving HIV care, prevention and treatment. Along with suppressing HIV replication, long-acting injectable versions of ART are becoming available to help manage the burden of lifelong daily medication.
Seven people in the world have been cured of HIV and much research is now looking towards sustainable and scalable HIV cure treatments. Our current research at Imperial College London is working in close partnership with international collaborators, scientists, funders and the community of people with HIV to test new types of treatment that may confer HIV remission off ART.
One of the many challenges faced by people living with HIV as they grow up and grow older is the worry about passing the virus to their partners and children. In 2023, there were still 1.3 million new HIV infections globally. Groundbreaking research has shown that people with HIV who are on medicines, with no detectable virus in their blood, cannot pass virus on to partners or their infants. In addition, the use of medicines taken by people at risk of acquiring HIV prior to and after sex (called PrEP) can reduce the chances of virus transmission. Recent research studies published this year have shown that a new drug (Lenacapavir) taken by HIV-negative people at risk provided 97-100% protection against acquiring HIV. ART medications, taken by people living with HIV, and those at risk of transmission have the capacity to end HIV globally. But we still have a long way to go. The last critical hurdle being stigma, and equal and equitable access to testing, prevention and treatment. What better way to explore how we might address this than by asking one of today’s young people who is actively managing their risks.
Jonas Bergmann
Destigmatising HIV/AIDS
I received my first HIV test while in high school. I wasn’t expecting or asking for this, I had just walked into the clinic for a routine check-up. When I told the doctor that I was sexually active, she immediately suggested I also get an HIV test. I froze. Not because I thought I had contracted HIV, but what if she would call my mother for approval? Or what if she would judge me for having had unprotected sex? I was scared and unsure of the situation. All I thought I knew about HIV came from the black-and-white hospital pictures of people I knew who had the same kind of sex as me. I entered university thinking of how my community was disproportionately represented in the HIV epidemic and wondering how I could make sure this would never repeat.
My generation grew up in a world where ART existed. I knew, even as a high schooler, that medical interventions were available because one of my friends started treatment. But we never really talked about it. Sex education certainly didn’t mention ART, and I suppose HIV/AIDS was used as a scare tactic, somehow distancing me and my peers from the actual fatality associated with this disease. The point is, we didn’t have to talk about the epidemic because it was all captured in those black-and-white photos. However, the reality remains starkly different.
Barriers to access: A call for action
Communities in low- and middle-income countries, as well as some groups within our own society, are still facing the inaccessibility of preventative medication like PrEP. The prohibition of homosexuality in some countries raises further difficulties in access to preventative medicine and care. Trans individuals are in fact 13 times more likely to be HIV-positive than other adults of reproductive age, highlighting the inaccessibility to testing and treatment, particularly for minorities facing stigma. The social constraints and power imbalances our generation faces when building interventions require novel ideas and the active inclusion of the communities we aim to assist. One organisation that I believe is taking the “rights path” is SIDC, a community-based organisation fighting for minority health. I was first introduced to the Lebanese organisation by a friend who worked there at the time. SIDC approaches care by de-centering service users and working closely with community members in order to offer care directly in the community. For example, they offer testing and information on HIV/AIDS in areas particularly used by marginalised communities. Understanding how group-identities impact accessibility to treatment and testing is vital for comprehensive interventions. Community members are not just patients, but partners in developing healthcare solutions towards the eradication of HIV/AIDS.
We’ve developed medical interventions to reduce mortality and morbidity. We now need to find a way to reduce inequality in treatment, destigmatise and make testing more accessible for marginalised communities. Finding the “rights path” (the theme set for this year’s World AIDS Day by the World Health Organization) might look different today, but a new generation of scientists and activists are more than capable of supporting communities towards ending HIV/AIDS. To achieve the SDG target 3.3 of ending the HIV epidemic, we must invest in both knowledge and resources for community-based interventions. Our generation stands on the shoulders of those who fought the HIV epidemic, benefiting from their hard-won experiences and progress. It is now our responsibility to continue their lifesaving work. We are proud of how far we’ve come in the past decades, and we look to a promising future. We encourage the reader to follow the latest developments from the RIO trial project.
Other resources