UNAIDS Programme Coordination Board (PCB) Thematic Meeting on the Sustainability of HIV Response
Round Table 1: The context and urgency of sustainability planning and response
Remarks from Edwin J Bernard, Executive Director, HIV Justice Network, Netherlands on community leadership to address human rights barriers
I am a gay man who acquired HIV 41 years ago in 1983. It was a significant year in other ways too:
- HIV was first identified as the cause of AIDS
- WHO held its first global AIDS meeting
- Richard Berkowitz and Michael Callen published ‘how to have sex in an epidemic’ inventing condom-based safer sex
- And a small group of people living with AIDS became the first community leaders in the HIV response, creating the Denver Principles, the blueprint for GIPA and MIPA principles now embedded in UNAIDS’ approach to community leadership to address human rights barriers.
Communities involve many different groups, working locally, nationally, regionally and globally. We are communities of women, men and youth living with HIV in all our diversities, as well as communities of gay men and other men who have sex with men, communities of sex workers, communities of transgender people, communities of people who use drugs. We are the key populations
And then there are communities of allies – human rights defenders who understand that public health is human rights and vice versa.
Despite member states committing to removing these human rights barriers in the 2021 Political Declaration – the 10-10-10 targets – we are far from getting anywhere close to achieving these targets because there are still far too many human rights barriers.
These are far too numerous to list, but they include gender inequality and gender-based violence; discrimination when receiving healthcare, in the workplace, in education, and in humanitarian settings; not being able to enter or migrate to a country of which you are not a citizen because of your HIV status; and the growing number of countries with so called ‘foreign agent’ laws that are closing civic space and stifling community leadership.
On top of these, every single member state criminalises one or more of the key populations, fully or partially, and 79 countries have HIV-specific criminal laws that unjustly criminalise HIV non-disclosure, exposure or unintentional transmission.
Ending HIV criminalisation is the focus of my organisation, the HIV Justice Network, and the global HIV JUSTICE WORLDWIDE coalition that we co-ordinate.
We can do this work thanks primarily to the Robert Carr Fund, which recognises the importance of community-led regional and global networks and our key role in addressing human rights barriers impacting the HIV response.
Dismantling discriminatory systems that have been built over decades and that oppress people living with and affected by HIV takes time and money – and needs community leadership.
So, if sustainability means a move to country-led integrated health systems, this will also mean that all the criminalised and marginalised people I’ve just mentioned will be even more left behind than they currently are.
But there’s a cheap and simple solution: decriminalisation!
A 2022 study from the Alliance for Public Health found that cost savings from decriminalisation of drug use could greatly reduce HIV transmission through increased coverage of opioid agonist therapy and antiretroviral therapy among people who use drugs in eastern Europe and central Asia.
Another 2022 study, from the Williams Institute, on the enforcement of HIV criminalisation laws in Tennessee of so called ‘aggravated prostitution’ – when a sex worker arrested for soliciting is found to be living with HIV – and criminal HIV ‘exposure’ – when a person living with HIV is prosecuted for allegedly not disclosing their HIV status before sex that may or may not risk transmission – estimated that the total cost of incarceration in prison for these unjust HIV-related crimes was $3.8 million.
And a 2021 study found that decriminalising sex work in Washington DC would generate over USD 5000 paid in income taxes by each sex worker – because sex work is work, after all! – plus more than USD20,000 in criminal legal system savings per sex worker a year.
If you decriminalise you not only save money you also ensure that every single person living with, or affected by HIV, gets the HIV services they need.
Following the science and basing laws and policies on public health and not morality or stigma saves money.
So, member states, if you just stop wasting money on ineffective, counterproductive criminalisation and invest in proven treatment and prevention programmes, sustainability of the HIV response is within sight.
To get to 2030, and beyond, to end AIDS as a public health threat, we need to ensure that we don’t forget the dignity and rights of people living with and affected by HIV – easy to cut funding for, and hard to measure – and make sure that we include ending all of forms of HIV-related stigma, discrimination and criminalisation and strive for all forms of equality and empowerment.
In the drafting room on Tuesday, the NGO Delegation added criminalisation to the list that included stigma and discrimination, but the final draft you will vote on later today no longer includes mention of criminalisation as a barrier to testing. I implore you commit to ensure that my recommendation to decriminalise to sustain the HIV response is included in any and all decision points that will come out of this meeting.
Key messages summary
- Human rights, gender justice and all the other10-10-10 societal enabler targets are essential, non-negotiable aspects of sustainability.
- Community leadership is essential to reach 2030 and to sustain the HIV response beyond that date.
- Don’t underestimate – or create more barriers for – communities. We are the experts in understanding what is needed to successfully achieve the end of AIDS.
- Support communities by funding us, including replenishing the Robert Carr Fund.
- The single most cost-effective intervention for every member state is to decriminalise, decriminalise, decriminalise!