World AIDS Day 2022 marks the halfway point of the UN’s SDGs 2030, which set the aims to end all AIDS-related deaths by 2030. The central strategy towards achieving this were the 90-90-90 goals but few countries managed to achieve this by 2020. Infection rates have increased in some parts of the world, and between 2021 to 2022, the number of infections only dropped 3.6%. There is a sense that the Global HIV response is slowing, and that the shift from acute to chronic infection has pushed HIV and AIDS down the policymaker agenda in favour of COVID-19 or other domestic challenges.
MHP’s ‘Networked Age’ research shows that identity and obligation are the primary reason individuals advocate for issues and the two drivers that cut across demographics. Over the years the HIV response has become a less polarising issue that is strongly tied to identity or relatability, and risks being lost in a lengthy list of global issues. Communication and messaging about HIV should seek to ensure the audience feels a personal commitment to care about HIV. Without this there could be a risk of limiting progress to reaching the SDGs.
Four decades since the start of the epidemic, 38.4 million people globally have HIV, and 40 million have died from AIDS-related causes. However, the brunt of the crisis is largely being felt in lower-income countries (LICs), with two thirds of people living with HIV (PLHIV) being in the WHO Africa region. Due to persistent issues of marginalisation, the global response should continue prioritising intersectionality and target populations most at-risk of contracting HIV: young women and girls, LGBTQIA+ people, sex workers and injecting drug users.
The COVID-19 pandemic has disrupted the response towards eliminating AIDS-related deaths and risks undoing much of the progress of the last decade. Beyond experiencing worse outcomes, PLHIV have seen access to screening services, check-ups and treatment disrupted globally. Disparities have widened and health services are stretched in LICs, meaning they are unable to deliver the appropriate care needed at this critical time. This major health crisis, coupled with other significant events such as the war in Ukraine, have shocked the global economy, leading to a reduction in funding for international aid projects, including the HIV response.
That the response depends so heavily on higher-income country (HIC) funding highlights that progress is fragile, and there is a need to ‘shockproof’ it. Continuing to strengthen and expand multilateral partnerships, debt relief in LICs, and reinforcing healthcare systems through sustainable community investments is needed to maintain equal access to resources and end the inequalities that drive AIDS. There is a large gap in all regions between the resources needed and the amounts available for prevention and societal enabler programmes.
15% of PLHIV still do not know their status, meaning 5.9 million are not being provided prompt treatment and may be unknowingly transmitting to others. Stigma makes it harder to bring patients into the treatment pathway. It prevents undiagnosed PLHIV engaging with testing, fearing they could face discrimination and abuse from their peers, family, and employers, despite the potential for serious illness. There is additional hesitancy to access services in marginalised populations, such as LGBTQIA+ people and sex workers, especially where they are criminalised or viewed negatively. Girls and young women —a group that saw one person globally acquire HIV every two minutes in 2021 – have an increased risk of infection from gender-based violence and in some areas are stigmatised for using sexual health services.
HIV-specific laws, such as those criminalizing HIV non-disclosure, exposure, and transmission, further entrench stigma and discrimination. Restrictive laws and policies, such as the requirement for parental consent for adolescents and young people to access services, discourage help seeking. Therefore, without tackling stigma in healthcare, educational, legal, and social settings, then those unknowingly living with HIV may not seek the help they need. Others who know their status but hesitate to attend check-ups and to pick up their medication, may also be impacted.
There needs to be a compassionate approach, increasing awareness of U=U (Undetectable=Untransmissible; PLHIV with an undetectable viral load cannot infect others) tackling misinformation and strengthening human rights legislation. Industry has been playing a valuable role in this, for example ViiV Healthcare’s campaign ‘HIV in View’, shows PLHIV leading normal, happy, and healthy lives, which is possible with access to diagnostic services and effective treatment. Positive examples in the media would reduce PLHIV’s fears of their futures, whilst tackling stigma. Compelling campaigns reflect the needs of the whole patient community, positioning patients as equal partners in their own care to drive and shape healthcare change.
LICs struggle to train and retain researchers and practitioners to address local and regional challenges. This leads to a reliance on external solutions, and an inability to develop their own approaches taking their contexts into account. There is limited access to research funding, and localised challenges or knowledge are generally not focussed on, meaning methods, theories, and insights from HICs are used more often. This ‘trickle-down science’ effect perpetuates the cycle of lack of advancement in LICs scientific capabilities and skews research to HIC priorities.
Voices in these communities are excluded in favour of HIC scientists; for example 96% of all global health conferences in the last 20 years have been held in those countries. MHP’s advocacy principles emphasise the need for community voices and representation. Effective advocacy focuses on compassion, patient-centrism, connection, and identity. Top-down advocacy from large organisations risks depersonalising messaging if the science and voices on the forefront of the HIV pandemic are not front and centre.
Ending the AIDS pandemic is both an ethical imperative and an urgent health and economic priority. Yet, in the age of polarisation in public debate, HIV no longer inspires the strong feelings it once used to, the kind which motivate more vocal advocacy. To compete with other priorities and capture attention, the HIV response needs to reframe itself as a fight against the structural and personal inequalities, grounded in intersectionality, that would build a broader coalition to continue the fight to 2030.
By Matteo Bellani