20 March 2019, Tokyo, Japan
The AIDS epidemic came to a turning point with the innovation of HAART, which enabled people infected with HIV to recover and live a healthy and productive life. Even though that particular medical innovation was a game changer, its impact was very limited, as at that time the circumstances were not on our side in terms of affordable pricing and resources allocated to fight the epidemic. Thus, as written in history, we “HIV patients” had to fight to gain access to the treatment that could save our lives.
As our voice roared globally to draw attention and demand concrete support from the international community, the Global Fund to Fight AIDS, Tuberculosis and Malaria (the Global Fund) was created and began to transform our collective lives. HIV medicines become available and people started getting the treatment that they needed. We were able to run our own programs and serve the needs of our own communities, we gave community members clean needles, condoms and lubricants to keep them away from the virus. Our programs allowed us to talk to our friends and encourage them to get an HIV test when regular health workers couldn’t or wouldn’t reach them. In short, we developed the means to organize and strengthen ourselves and to have a seat at the table and be heard in policy making processes at the national, regional and global decision-making bodies that impact our lives.
I was diagnosed with HIV in Indonesia in 2005, when I undertook a mandatory medical check-up test for employment purposes. There was no counselling provided, they just took my blood and run some tests including HIV, and instead of receiving medical care, I instantly got fired when the results came back positive. I had nowhere to go for help or support. As I went back deep into the dark hole of helplessness, surprisingly, I found a glimpse of light at the end of the tunnel. The help came in the form of a community outreach program run by fellow drug users, like myself, with support from a university in my home town. It was a local initiative where they provided harm reduction services including clinical and psychosocial services. I was given a lot of information related to HIV infection and I was encouraged to join a people living with HIV (PLHIV) peer-support group where I got to meet others living with HIV. Fortunately, at around the same time, the Indonesian government had just started its national HIV treatment program with the Global Fund’s support, and because of that, my peers enable me to get timely access to life-saving HIV treatment.
There is a body of evidence that has demonstrated over the last two decades since the Global Fund was established about how, if the community of people living with HIV is properly embraced as partners, our unique skills and lived experiences can help navigate the direction of this movements towards the ultimate goal of ending AIDS, Tuberculosis and Malaria.
However, for us to get there, we need to do more and not less, and at the same time we have to address many challenging issues, some which most country governments prefer to close their eyes to and ignore. Our community remains highly stigmatized due to our backgrounds as ‘populations with risky behaviour’ and even worse, rather than getting the help we deserve as human beings, we are criminalized because of our sexual orientations, or our drug use, or because we chose to sell sex to earn our income. We have been systematically pushed into a corner where we are prevented from empowering ourselves or using our potency as the solution to one of the biggest threats to public health globally. Instead, we are being labelled as the roots of the problem, despite the mountain of evidence showing the other way around. These unjust attitudes towards our communities has limited the reach of our collective worldwide AIDS response, shackled our efforts to achieve maximum impact, and further jeopardized all of our investments to this cause.
The Global Fund continues to prioritize countries that are of low income but have high rates of HIV. While this is a good thing to maximize the impact of the resources that we have, we should not forget that there is an epidemic among key populations that is concentrated. Middle income countries still need the Global Fund’s support in their effort to end the epidemic, particularly in ensuring that the rights of key populations continue to be protected and respected in the response towards the epidemic. The HIV epidemic is not limited by borders, so we need to ensure that the Global Fund remains global so that it can do what needs to be done, where it needs to be done.
Now we are have arrived at another tipping point, where we can either move forward and finish the job or revert back to a different time where humanity is undermined and our voice is silenced.
We celebrate the fact that Japan is one of the primary driving forces in the Universal Health Coverage (UHC) discussions. We need to keep fighting for health for all to ensure that people have equal access to the services that they need. There is a lot of lessons to learn that the HIV community can share to contribute to the strength of the ongoing UHC discussions. UHC must build on the successes and failures that the global HIV response has gained and together, we can ensure that the right to health is fulfilled and not just a privilege for some.
We choose the right path almost two decades ago; let’s ensure that we do so again.
