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Take the sting out of HIV/Aids by ending the stigma

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Picture Credit: REUTERS/Siphiwe Sibeko/File Photo – Nine-year-old Tumelo shows off antiretroviral (ARV) pills before taking his medication at Nkosi’s Haven, south of Johannesburg November 28, 2014.

By Michael Buitron

In 2000, I presented data on our research centre’s prevention programmes at the International Aids Conference in Durban. Tears streamed down my face while I sat in the front row at the opening ceremony, as the late 11-year-old Nkosi Johnson talked about his life with Aids and having to leave his village because of HIV-related stigma.

In the years that followed, HIV incidence – the rate of new infections – remained high, as they would throughout the 2000s. Despite our best efforts at promoting behaviour change, it would take a widespread uptake of antiviral medications before we’d see any improvement.

We learnt that HIV transmission is dependent on the virus circulating in a patient’s body. With the widespread use of antiretroviral therapies – ARVs – we could stop the progression of Aids and HIV transmission.

Science has transformed HIV from a fatal disease to a chronic, manageable condition. By comparison, changing behaviours and attitudes around HIV are challenges that persist to today. As this “test and treat” model comes into widespread use, we see fewer new cases of HIV and fewer people with visible signs of Aids.

Picture Credit: Reuters – South African Aids activist and sufferer Nkosi Johnson, then 11, addressed the XIII International Aids Conference in Durban, on July 9, 2000. Cutting a fragile figure, Nkosi made a clarion call in his world-renowned speech asking parents to be open about HIV with their children to break the stigma and cycle of discrimination against those who suffer with Aids. Nkosi died on June 1, 2001, at the age of 12, in Johannesburg.

In the early years, it was more common for celebrities to disclose their HIV status in their last days, which helped humanise people living with HIV. Today, HIV is less of a visceral presence in our lives. People living with HIV can remain unseen, as we work, date, marry, and otherwise get on with our lives.

Martin Luther King Jr reminded us that “the arc of the moral universe is long, but it bends toward justice”. As someone who has worked in HIV research and who is also living with HIV, I have had the privilege to bear witness to that progress. Unfortunately, the progress that has made HIV less visible also gives space for HIV-related stigma to grow.

We mostly fear the things we can’t see. This invisibility also makes life more difficult for people living with HIV who are unable to find their peers for support. For the past 11 years, I have run a newly diagnosed support group where I live in California.

Often participants require specific bits of information: finding a clinic, understanding a lab result, or how to disclose their status to family, supportive friends, or while dating. Some people come for a few sessions to get the information they need, while others stay for longer, helping out their peers who come to the group later.

Earlier this year, I created a Twitter account @neolithicrumba2, and started posting updates from the International Aids Conference, advances in cure research, and some basics about labs, monkeypox, U=U, and more.

I quickly found other people living with HIV and discovered networks where those who were newly diagnosed could ask questions identical to the ones being asked in my in-person support group.

I started receiving direct messages from places far and wide, from Azerbaijan, Saudi Arabia, South Africa, China, and throughout southeast Asia and Latin America. For people living with HIV, especially where HIV stigma remains strong, Twitter has become a resource for information and support.

As I have heard many HIV clinical providers say, HIV has become a chronic manageable disease like many others. Compared to something like diabetes which requires a radical change in diet, needle sticks to check glucose levels, pills, and self-administered insulin injections, HIV can easily be controlled by taking a pill a day and a few visits to the doctor a year.

But as any person with HIV will tell you, it’s much easier to date or find employment with diabetes than to do the same with HIV. The burden of HIV-related stigma persists. In my local clinic, we lose about 30 patients a year. Deaths from Aids are rare, but the portion of people living with HIV to take their own lives remains high.

Reducing HIV-related stigma is the new priority to improve the quality of life for all persons with HIV. Peer groups, like those that arise spontaneously on Twitter allow people with HIV to normalise their chronic condition, find supportive friends, maintain their health and ultimately move forward and achieve their goals.

We can only end HIV by ending HIV stigma.

Buiton is an HIV tester, PrEP provider, and support group facilitator for HIVE Project, an Aids resource centre in the US.