1 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
At the beginning of the 1980s, before HIV had been identified as the cause of AIDS, the infection was thought to only affect specific groups, such as gay men in developed countries and people who inject drugs. The HIV virus was first isolated by Dr Françoise Barré-Sinoussi and Dr Luc Montagnier in 1983 at the Institut Pasteur. In November that year, WHO held the first meeting to assess the global AIDS situation and initiated international surveillance. It was then that the global health community understood that HIV could also spread between heterosexual people, through blood transfusions, and that infected mothers could transmit HIV to their babies.
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
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.
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% 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.
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% 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 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.
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% 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.
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”.
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.
“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.