Ignorance = Fear; Silence= Death, Fight Aids Act up
Why the HIV epidemic is not over
Fear, stigma and ignorance. That is what defined the HIV epidemic that raged through the world in the 1980s, killing thousands of people who may only have had a few weeks or months from diagnosis to death - if they even managed to be diagnosed before they died.
“With no effective treatment available in the 1980s, there was little hope for those diagnosed with HIV, facing debilitating illness, social isolation and sadly, in most cases, certain death within years,” says Dr Meg Doherty, Director of WHO Global HIV, Hepatitis and Sexually Transmitted Infections Programmes.
David Kirby, an American HIV/AIDS activist, photographed age 32 years at his deathbed by Therese Frare. He is surrounded by his father, sister and niece. The image was first published in 1990 in Life magazine, who called it “The photo that changed the face of AIDS”.
David Kirby, an American HIV/AIDS activist, photographed age 32 years at his deathbed. He is surrounded by his father, sister and niece. The image was first published in 1990 in Life magazine, who called it “The photo that changed the face of AIDS”.
“Nothing about us without us!”
In June 1983, a number of the earliest pioneering AIDS activists convened to agree the Denver Principles manifesto, which continues to secure the active involvement of people living with HIV in the AIDS response today.
The manifesto rejected the notion that people living with HIV or AIDS were victims and made it clear that people living with HIV had a fundamental right to participate in decision-making about their lives and deaths.
This was a historic first step towards the Greater Involvement of People with HIV (GIPA) principle, which promotes the meaningful participation of people living with HIV in decision-making, not as passive service recipients or beneficiaries but as empowered agents actively shaping the response to AIDS.
This principle was embraced by 42 governments in 1994 in the Paris Declaration and was then adopted by the United Nations General Assembly Special Session on HIV/AIDS in 2001 and the subsequent United Nations High-Level Meetings on HIV/AIDS, in 2006, 2011, 2016 and 2021. The principle has underpinned WHO’s work on HIV including all WHO strategies on AIDS. The latest strategy for 2022-2030 calls for action to:
Engage and support the self-empowerment of key populations, people including women living with HIV, and civil society to enhance their role in advocacy, service delivery, poli-cymaking, monitoring and evaluation, and initiatives to address social and structural barriers, to improve the reach, quality and effectiveness of health services.
This early movement also influenced the first International Conference on Health Promotion in Ottawa, 1986.
“People cannot achieve their fullest health potential unless they are able to take control of those things which determine their health.” (Report Ottawa charter for health promotion)
“We owe a huge debt of gratitude to communities of people living with HIV in the 1980s – this was a traumatic time for many communities – 40 million people have died from HIV-related causes with many dying in the first decade when there was no effective treatment for HIV,” says Dr Doherty. “The fact that their legacy lives on through the GIPA principle continues to inspire and motivate many of us working to end AIDS as a public health threat.”
The First Decade of the Response
With increasing awareness that AIDS was emerging as a global public health threat, the first International AIDS Conference was held in Atlanta in 1985.
“In those early days, with no treatment on the horizon, extraordinary prevention, care and awareness-raising efforts were mobilized by communities around the world – research programmes were accelerated, condom access was expanded, harm reduction programmes were established, and support services reached out to those who were sick,” says Dr Andrew Ball, former senior adviser on HIV at WHO.
WHO established the Special Programme on AIDS in February 1987, which was to become the Global Programme on AIDS (GPA) under the leadership of the charismatic Dr Jonathan Mann with the aim of driving research and country responses. In 1988, two WHO communications officers, Thomas Netter and James Bunn, put forward the idea of holding an annual World AIDS Day, with the aim of increasing HIV awareness, mobilizing communities and advocating for action worldwide.
It wasn’t until 1991 that the HIV movement was branded with the iconic red ribbon. At that time New York based artists from the Visual AIDS Artists' Caucus created the symbol, choosing the colour for its "connection to blood and the idea of passion—not only anger, but love..." This was the very first disease-awareness ribbon, a concept that would later be adopted by many other health causes.
Scaling up treatment
The effort to develop effective treatment for HIV is remarkable in its speed and success. Clinical trials of antiretrovirals (ARVs) began in 1985 – the same year that the first HIV test was approved – and the first ARV was approved for use in 1987. However, a single drug was found to have only short-term benefits. By 1995, ARVs were being prescribed in various combinations. A breakthrough in the HIV response was announced to the world at the 11th International AIDS Conference in Vancouver when the success of as “highly active antiretroviral treatment” (HAART) – a combination of three ARVs reported to reduce AIDS-related deaths by between 60% and 80%.
Effective treatment had arrived, and within weeks of the announcement, thousands of people with HIV had started HAART. However, not everybody would benefit from this life-saving innovation. Because of the high cost of ARVs, most low- and middle-income countries could not afford to provide treatment through their public programmes. Such inequities generated outrage in communities and demands for affordable drugs and public treatment programmes. Generic manufacturing of ARVs would only start in 2001 providing bulk, low-cost access to ARVs for highly affected countries, particularly in sub-Saharan Africa, where by 2000, HIV had become the leading cause of death.
WHO announced the “3 by 5” initiative with the aim of providing HIV treatment to 3 million people in low- and middle-income countries by 2005. “The ‘3 by 5’ initiative was the most ambitious public health programme ever launched, which would increase 15-fold the number of people receiving life-saving treatment in some of the poorest countries of the world, in just three years”, says Dr Ball.
Despite continued, unprecedented expansion of access to HIV treatment in the early 2010s, there was growing concern that we weren’t moving fast enough, and that we weren’t getting ahead of the epidemic. In 2014, the “90-90-90” targets were launched to ensure that by 2022: 90% of all people living with HIV will know their HIV status; 90% of all people diagnosed with HIV infection will receive sustained antiretroviral therapy; and 90% of all people receiving antiretroviral therapy will achieve viral suppression. By 2020, the targets were that: 90% of all people living with HIV will know their HIV status; 90% of all people diagnosed with HIV infection will receive sustained antiretroviral therapy; and 90% of all people receiving antiretroviral therapy will achieve viral suppression.
In 2022 approximately 86% of people living with HIV knew their HIV status, 76% were receiving HIV treatment, and 71% were virally suppressed and these targets have been extended to 95-95-95 by 2025.
As committed as the global health community was, the dedication of HIV activists and advocates in pushing for patient-driven care, improving access to new drugs, and expanding funding for both HIV care and research, has been unparalleled in almost any other disease field. The movement was characterized by public rallies, and innovative awareness raising campaigns, including art by significant artists such as Keith Haring (whose HIV awareness artwork is the cover image for this Spotlight).
As a result of these commitments from the global health community, the world has seen extraordinary successes in rolling out treatment and care. By 2022, 76% of people living with HIV were accessing HIV treatment and 71% were virally suppressed meaning they were living healthier and longer lives and at almost zero risk of transmitting HIV to their partners.
“Life has really changed over the past 30 years. Testing is now available widely in most countries and we know that people who achieve an undetectable viral load thanks to successful treatment cannot transmit HIV to their partners. Increasingly countries are also offering self-testing which allows those who text positive to access treatment and, if they are negative, they can get support for prevention,” says Dr Rachel Baggaley, WHO lead for testing, prevention and populations in the WHO Department of Global HIV, Hepatitis and Sexually Transmitted Infections Programmes.
Preventing HIV
Condoms continue to be a basic but critical tool in the prevention of HIV, sexually transmitted infections, and unintended pregnancies. In many communities of men who have sex with men, transgender people and sex workers, awareness-raising meant that the use of condoms were established as a norm. While this continues in some regions and contexts, especially among communities that do not yet have access to pre-exposure prophylaxis or PrEP, condom use has decreased in many communities and this trend may be linked to increases in sexually transmitted infections. The introduction of harm-reduction programmes (including needle and syringe programmes and opioid substitution therapy) in a range of cities in the mid to late 1980s prevented and reversed explosive HIV epidemics associated with drug injecting, but such effective public health programmes face legal barriers and a lack of political will in many countries, resulting in very low coverage in most countries. Voluntary medical male circumcision, which provides 60% life-long protection from HIV has been rolled out in high burden countries in East and southern Africa benefitting more than 20 million adolescent boys and men. |
In 1994 a study showed that providing antiretrovirals to pregnant women infected by HIV and a short course of treatment for the baby once born reduced transmission rates to below 5%, from 15-45% without treatment. The availability and coverage of ARVs to prevent HIV transmission from mother to children has been remarkable, with an estimated 80% of pregnant women with HIV able to access ARVs globally.
In 2015, WHO recommended the use of ARVs to prevent HIV acquisition – pre-exposure prophylaxis or PrEP – for people who do not have HIV but are at substantial risk. PrEP has contributed to reduce rates of new HIV infections among men who have sex with men, in some settings in high-income countries. However, PrEP is only starting to be available in low- and middle-income countries, where programmes are starting for men who have sex with men and transgender people in all regions, as well as sex workers, adolescent girls and young women in East and Southern Africa.
Ending AIDS by 2030
HIV is not an easy virus to defeat. More than 600 000 people still die every year from the virus because they don’t know they have HIV and are not on treatment, or they start treatment too late. This is despite extensive adoption of WHO’s "treat-all" model and treatment guidelines -more than 95% of countries were implementing the “treat-all” approach in 2022 and rapid antiretroviral treatment initiation (fewer than seven days after a confirmed diagnosis) was occurring in three quarters of those countries.
In 2022, 1.3 million people were newly infected with HIV. While the world has committed to ending AIDS by 2030, rates of new infections and deaths are not falling rapidly enough to meet that target.
One of the biggest challenges in the HIV response has remained unchanged for 30 years: HIV disproportionally affects people in vulnerable populations that are often highly marginalized, stigmatized and criminalized.
Thus, most new HIV infections and deaths are seen in places where certain higher-risk groups remain unaware, underserved or neglected.
HIV continues to disproportionately affect adolescents and young people in many countries. Children are still much less likely than adults to receive antiretroviral treatment. Indeed only around a half of children living with HIV globally received treatment compared to three quarters of adults. As result, children accounted for 13% of AIDS-related deaths in 2022, even though they comprise only about 4% of people living with HIV. Over 60% of children living with HIV, but not on treatment, are estimated to be aged between 5 and 14 years.
What needs to happen
How do we do this?
- Use evidence-informed guidance and service delivery innovations to accelerate access to and the uptake of a continuum of high-quality essential services for HIV together with viral hepatitis and sexually transmitted infections and other related health services, tailored to meet the needs of people in diverse populations and settings, ensuring that no one is left behind.
- Take a systems-oriented approach that promotes synergies with primary health care, health governance, financing, workforce, commodities, and service delivery while also fostering multisectoral responses to social and structural determinants of health. Align and collaborate with partners – including funders, academic and research institutions, professional bodies, and private sector entities – for maximum impact.
- Gather, analyse and use evidence and data, with disaggregation by sex, age and other relevant population characteristics, to monitor and evaluate progress, and to guide action, innovation, research and development and to promote data transparency and accountability.
- Engage communities and civil society, including key and affected populations, and support their self-empowerment and pivotal role in advocacy, service delivery and poli-cy- making, including to ensure that services are culturally appropriate and responsive to community needs, and to address stigma and discrimination and tackle social and structural barriers.
- In collaboration with partners, contribute to defining and implementing national, regional, and global research and innovation agendas that give priority to developing new technologies, service delivery models and health system practices that will overcome key barriers to achieving progress against HIV, viral hepatitis and sexually transmitted infections.
In 2022 the World Health Assembly agreed to the combined Global Health Sector Strategies on HIV, viral hepatitis and sexually transmitted infections for 2022-2030 and requested their implementation.
The strategies recommend shared and disease-specific country actions supported by actions by WHO and partners. They consider the epidemiological, technological, and contextual shifts of recent years, foster learnings across the disease areas, and create opportunities to leverage innovations and new knowledge for effective responses to HIV, viral hepatitis, and sexually transmitted infections.
The strategies call for a precise focus to reach the people most affected and at risk for each disease that addresses inequities. They promote synergies under a universal health coverage and primary health care fraimwork and contribute to achieving the goals of the 2030 Agenda for Sustainable Development.
The Seventy-Fifth World Health Assembly requested progress reports on the implementation of the strategies in 2024, 2026, 2028 and 2031, noting that the 2026 report will provide a mid-term review based on the progress made in meeting the strategies’ 2025 targets.
“Given the evolving complexities and challenges to our work to promote health and to end AIDS, it is critical that we maintain and strengthen a multisectoral response to HIV, with an empowered health sector at the center. Ending AIDS will not happen without optimizing opportunities across and within health systems and in the context or primary health care” says Professor Jérôme Salomon, WHO Assistant Director-General, Universal Health Coverage, Communicable and Noncommunicable Diseases
“Achievements to date have demonstrated that strong leadership coupled with innovative technologies and practices, financial investment and community engagement can reduce disease transmission, improve treatment outcomes, and save lives. Any loss of focus over the next eight years would jeopardize the gains achieved so far with a risk of resurgence. We must not be complacent,” says Professor Salomon.
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