The timely and equitable provision of treatment and prevention tools is just one part of the ongoing fight against HIV. Local, national, regional, and international authorities – many of which still labour under misguided preconceptions about people living with HIV – need to come together to effectively buttress the provision of next generation therapies with behavioural, biomedical, and structural changes.
Stigma: A Persistent Challenge
Ever since its emergence in the 1980s, people living with HIV have been shockingly stigmatised. AIDS was even nicknamed ‘4H Disease’ in the early days because it seemed to affect heroin users, homosexuals, haemophiliacs, and Haitians. For years, PLHIV have not only had to battle the disease itself but discrimination and misunderstanding from individuals and institutions. While massive progress has been made on this front, stigma is still one of the key barriers to effective and widespread HIV prevention, diagnosis, treatment, and ultimately the UNAIDS 2030 target of ending the disease as a public health threat.
As IAPAC President & CEO José Zuniga points out, “Stigma persists as a challenge to accessing and utilising HIV and other health services. This stigma is not just HIV specific, but intersectional in nature, dehumanising people living with and affected by HIV by nature of their race and ethnicity, sexual orientation, gender identity, migrant status, and other factors.”
Bruce Richman, himself a PLHIV and the originator of the Undetectable=Untransmissable (U=U) campaign, goes even further. “HIV stigma continues to be the greatest challenge to ending the epidemic, rooted in outdated fears, judgment, and misinformation,” he says. “Stigma deters people from getting tested and, if diagnosed, seeking treatment and care. PLHIV worldwide continue to face HIV stigma, resulting in many forms of harm including social isolation, depression, violence, and worse long-term health outcomes. The Joint United Nations Programme on HIV and AIDS (UNAIDS) recognizes that the reduction of stigma, discrimination, and criminalisation can avert millions of new infections and AIDS-related deaths.”
This stigma is driving up cases in marginalised communities in the US, as Gilead’s Bettina Bauer notes. “We know that HIV impacts key populations unequally, for example in 2019, gay and bisexual black men accounted for 26 percent of all new HIV diagnoses in the United States, due in part to intersectional stigma and discrimination based on race and sexual orientation. Transgender people are 49 times more likely to be living with HIV than the general population. For some women, gender-based violence can drive disparities in HIV infection rates and prevent women living with HIV from accessing care. These inequalities continue to hold back efforts to end the HIV epidemic.”
The NIH’s Dr Carl Dieffenbach agrees, adding that “There are governments around the world that say the right things, but don’t do them. The United States, for example, is not the best place in the world to be living with HIV, particularly in the American South if you are young, black, and gay.”
Integrating Destigamatisation into Aid Efforts
Recognising this, the global aid community has moved to include destigmatisation of PLHIV into its work, including in some cases making it a condition for countries to receive funding. The Global Fund, for its part, emphasise the importance of human rights and reducing stigma in their strategy to fight HIV and expect countries to include specific measures to reduce stigma in their funding proposals. They focus on marginalised populations, including key populations like sex workers, men who have sex with men, and people who inject drugs. This approach involves inclusive consultations and country dialogues to ensure that the needs of these groups are met, and stigma is addressed effectively.
PEPFAR also touts a strong focus on addressing stigma and discrimination. Their programs include community outreach and education to combat stigma and promote acceptance of PLHIV. They work closely with local organizations to ensure that interventions are culturally appropriate and effective in reducing stigma.
Finally, the Gates Foundation also integrates stigma reduction in its HIV/AIDS initiatives. They support programs that promote education and awareness to reduce stigma and discrimination, particularly in regions with high HIV prevalence. Their approach includes funding research and advocacy efforts to change public perceptions and policies regarding HIV.
Anti-LGBTQ+ Legislation: A Major Setback in the Fight Against HIV
However, this global push for destigmatisation of PLHIV is being derailed by a series of highly repressive pieces of legislation in Sub-Saharan Africa, notably in Uganda, Ghana, and Tanzania. On top of this, as detailed elsewhere in this report, HIV has become embroiled in the US culture wars leading to PEPFAR’s continued funding of treatment and prevention coming under threat.
“Uganda’s notorious ‘Anti-Homosexuality Act’ is creating an environment of fear and persecution that continues to impact LGBTQ+ people’s ability to access essential HIV services,” explains Richman. “Similarly, Tanzania introduced new regulations in 2019 that banned the registration of LGBTQ+ organizations and prohibited HIV outreach to LGBTQ+ communities. And in the US, we’re seeing a sweeping trend to curtail LGBTQ+ rights in education and health including legislation denying transgender people access to essential gender-affirming healthcare.”
“The stigma and discrimination reinforced by these laws and the hostile media circus surrounding them create environments where LGBTQ+ people may avoid seeking healthcare for fear of discrimination or even legal repercussions. This is particularly detrimental in the context of HIV, where timely diagnosis and consistent treatment are crucial for maintaining an undetectable viral load, maintaining the health of the person living with HIV and eliminating onward transmission.
Speaking from the frontlines of this threat to PLHIV, Ugandan patient advocate Flavia Kyowukama, who has lived with the disease for 35 years, adds that “Uganda’s Anti-Homosexuality Act has disrupted HIV and AIDs related work. LGBTQ+ women living with HIV are particularly affected, as they often face collective rape or feel pressured to engage in heterosexual relationships to avoid targeting. This increases their risk of contracting HIV. Additionally, the criminalization of HIV in Uganda further complicates the situation. The law stipulates severe penalties for those accused of knowingly spreading HIV, which can deter people from seeking testing and treatment due to fear of prosecution. This law often ends up stripping away necessary protections for those living with HIV and places the burden of HIV prevention on the PLHIV.”
Access to Medicine Foundation CEO Jay Iyer notes these laws’ impact on the medicines that people are (or are not) taking for HIV. “These laws stigmatise HIV and discourage people from accessing diagnosis, treatment and support in the usual way, thereby opening up alternative channels where falsified and poor-quality medicines and sham treatments are more prevalent. In the worst-case scenario, patients might not access any treatment and lose their lives.”
For Zuniga, while these pieces of legislation may seem somewhat remote and irrelevant to stakeholders in the Global North, they have far-reaching and potentially devastating consequences. “These laws tend to drive epidemics underground,” he proclaims. “In addition to the human rights violations that they represent, they create a disabling environment for the type of HIV and other health outcomes that we desire. Therefore, there is a continued need for us to use every lever at our disposal so that these heinous laws do not live on the statute books for long. Lives are at stake, and not just the lives of people in Uganda or Ghana, whose parliament recently passed a similar anti-LGBTQ bill. An infection in Uganda should matter to all of us on human rights grounds, but also because it creates the space for the onward transmission of HIV and other, completely preventable, communicable diseases, in a world that is increasingly interconnected due to globalisation.”
U=U: The Good News Strategy for Smashing Stigma
There is, however, some good news. The second decade of the millennium began with three major breakthroughs for HIV: the advent of PrEP and the idea that by taking a pill a day a person can avoid getting HIV; the creation of the Medicines Patent Pool and its subsequent effect on HIV medicine pricing; and finally the discovery that antiretroviral therapy can not only suppress the virus in an individual patient but also cause that patient not to be infectious to others. This is the idea of U=U – that an undetectable viral load of HIV means that the virus is untransmittable to others.
U=U has been hailed by UNAIDS as “one of the most effective and historic counter-narratives to HIV stigma,” and in the words of Richman – who first coined the idea – “is proving to be a powerful tool in reducing HIV-related stigma at the individual, community, and policy levels.”
Richman explains that “U=U is the most remarkable advancement in the global fight against HIV since the advent of life-saving antiretroviral therapy nearly 30 years ago. It means that a person living with HIV who is on treatment and has an undetectable viral load not only protects their own health but also has zero risk of transmitting HIV through sex.”
U=U is also a key weapon in the pushback against some of the aforementioned discriminatory legislation on the statute books in various countries. “U=U is being used in advocacy efforts to end discriminatory laws, policies, and practices that are grounded in stigma and outdated science,” says Richman
“For instance, punitive laws that criminalize the non-disclosure of HIV status, regardless of actual transmission or the possibility of transmission, are being rolled back in many countries, including the US, Zimbabwe, France, and Canada. Recent policy changes in the UK now allow people living with HIV to serve in the military and become egg and sperm donors with sustained undetectable viral loads. Similarly, in Oman, people living with HIV can now qualify for marriage licenses.”
More to Come
The stigmatisation of PLHIV, while much improved from the dark days of the 1980s and 90s, persists. As Mitchell Warren from HIV prevention nonprofit AVAC explains, “HIV exists as a pandemic because it hits to the heart of people’s sexuality, or people’s use of drugs. These are behaviours that are so easily criminalised and stigmatised. For all the progress we have achieved, it will disappear in the blink of an eye if right wing, conservative policymakers around the world get their way.”
If PrEP and U=U could be rolled out to everyone – testing people, if they are infected with HIV, getting them on antiretroviral therapy to achieve viral suppression and if they are at risk of HIV getting them on PrEP – the epidemic could be ended. The tools to end HIV as a public health threat are therefore already in our hands, but stigma stands as one of the major barriers to using them widely and effectively.
