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 and certain death within years,” says Dr Gottfried Hirnschall, Director of the HIV department at WHO.
December 2018 marks the 30th anniversary of World AIDS Day – a day created to raise awareness about HIV and the resulting AIDS epidemics. Since the beginning of the epidemic, more than 70 million people have acquired the infection, and about 35 million people have died. Today, around 37 million worldwide live with HIV, of whom 22 million are on treatment.
When World AIDS Day was first established in 1988, the world looked very different to how it is today. Now, we have easily accessible testing, treatment, a range of prevention options, including pre-exposure prophylaxis of PrEP, and services that can reach vulnerable communities.
In the late 1980s, however, “the outlook for people with HIV was pretty grim,” says Dr Rachel Baggaley, coordinator of HIV testing and prevention at WHO. “Antiretrovirals weren’t yet available, so although we could offer treatment for opportunistic infections there was no treatment for their HIV. It was a very sad and difficult time.”
The first World AIDS Day
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, 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, mobilising communities and advocating for action worldwide. This December is the 30th anniversary of World AIDS Day, with the theme: “Know Your Status”.
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 per cent and 80 per cent.
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 galvanise further action. By 2020, the targets were that: 90 per cent of all people living with HIV will know their HIV status; 90 per cent of all people diagnosed with HIV infection will receive sustained antiretroviral therapy; and 90 per cent of all people receiving antiretroviral therapy will achieve viral suppression.
WHO & HIV: 30-year timeline
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 characterised 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 2017, over 75 per cent of people (28 million) estimated to be living with HIV were able to access testing.
“Life has really changed over the past 30 years. Testing is now available widely in most countries. Increasingly countries are also offering self-testing. Self-testing can be empowering – if people are positive for HIV, they can decide to get treatment as well as prevention. If they are negative, they can get support for prevention,” says Dr Baggaley.
In 1984 a study showed that providing antiretrovirals to pregnant womeninfected by HIV and a short course of treatment for the baby once born reduced transmission rates to below 5 per cent, from 15-45 per cent without treatment. The availability and coverage of ARVs to prevent HIV transmission from mother to children has been remarkable, with an estimated 80 per cent 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. Nearly a million 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 late. This is despite WHO guidelines in 2015 recommending that all people living with HIV should receive antiretroviral treatment, regardless of their immune status and stage of infection, and as soon as possible after their diagnosis.
In 2017, 1.8 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 and stigmatized. Thus, most new HIV infections and deaths are seen in places where certain higher-risk groups remain unaware, underserved or neglected. About 75 per cent of new HIV infections outside sub-Saharan Africa are in men who have sex with men, people who inject drugs, people in prisons, sex workers, or transgender people, or the sexual partners of these individuals. These are groups who are often discriminated against and excluded from health services.
HIV continues to disproportionately affect adolescents and young people in many countries. About a third of new HIV infections are in people aged 15-25 years. In almost all countries where HIV affects many groups, young women aged 15–24 years are three to five times more likely than their male counterparts to have HIV. In sub-Saharan Africa, 71 per cent of new infections are in adolescents. As the world’s population of adolescents grows, particularly in East and southern Africa, high incidence among young people will equate to rises in the absolute numbers of new infections. Efforts to address this problem must tackle structural issues, such as keeping girls in school, and prevention of gender-based violence alongside greater access to sexual and reproductive health services. Listening to the voices of young women and including them in programme design and implementation is essential is services are to be acceptable and effective.
Mercy Ngulube, a 20-year-old HIV activist from Wales, who was born with the infection, agrees that “when we look at our efforts in improving our fight against the epidemic in general – stigma is one huge factor that holds us back.”
Much has been made at HIV conferences and global discussions about the need for young people to be at the heart of efforts to end AIDS. Ngulube says that “whilst there are strides being made to put young people on the agenda – it’s not enough. Once we invest in our young people and continue to give them space and time, we can see them effectively lead the way – from the front”.
What needs to happen
The theme of this World AIDS Day – Know Your Status – is important. One in four people with HIV don’t know that they have HIV. To bridge some critical gaps in the availability of HIV tests, WHO recommends the use of self-tests for HIV. WHO first recommended HIV self-testing in 2016, and now more than 50 countries have developed policies on self-testing. WHO, working with international organizations such as Unitaid and others, supported the largest HIV self-testing programmes in six countries in southern Africa. This programme is reaching people who have not tested themselves before, and is linking them to either treatment or prevention services. This World AIDS Day, WHO and the International Labour Organization will also announce new guidance to support companies and organizations to offer HIV self-tests in workplace.
People with HIV often have other infections – known as co-morbidities – such as TB or hepatitis. One in three deaths in people with HIV is from TB. Around 5 million people are living with both HIV and viral hepatitis. One in three people with HIV has heart disease. This has meant that HIV care has long needed joined-up care, although this doesn’t always happen in practice. “WHO is now promoting ‘person-centred’ health services to all people living with HIV, to meet their holistic health needs, not just their HIV infection – linking HIV services with those for TB, sexual and reproductive health, non-communicable diseases and mental health,” says Dr Hirnschall.
How do we do this? Outside sub Saharan Africa, 75 per cent of new infections are among key populations and their partners. We need to act on these data and re-focus services to reach these populations at greatest risk. This will include addressing stigma and discrimination that continue to be barriers and providing services in and with communities. In 2016 the World Health Assembly adopted the WHO Global Health Sector Strategy on HIV, 2016-2021. The strategy provides new direction for the HIV response as it aims to fully integrate HIV into the broader health and development agenda of achieving universal health coverage by 2030 – where all people receive high-quality health services and medicines they need without experiencing financial hardship.
“The future of the HIV response will also require looking beyond HIV care provision and ensuring that the disease response is embedded in universal health coverage. Ending AIDS is unlikely to ever happen without Integrated health system that provide HIV prevention, diagnosis, and treatment as well as care with other essential health services. and support to other co-morbidities such as TB, NCDs and mental health at the community level. A people-centred, human rights based and holistic approach is crucial”, says Dr Naoko Yamamoto, Assistant Director-General for Universal Health Coverage and Health Systems, WHO.
“30 years after the first World AIDS Day campaign, we still cannot be complacent in our response to HIV,” says Dr Hirnschall.