Meet man taking HIV drugs in public to fight stigma
Ruele Okeyo, 26, started taking antiretroviral drugs (ARVs) in 2020 after he learnt that he was HIV positive from a random test he took with a couple of his friends.
As much as the virus changed his life, he swore to ensure that he took his pills religiously. Two years later, he started a campaign where he took ARVs in public, recorded himself and posts the videos on social media.
“It all started on TikTok. I already have a podcast but wanted to venture into a new platform with more visuals. When I started watching content from people living with HIV, I did not like the kind of sad and pitiful narrative they were showing. It really sends a bad message, but I understand where they are coming from. It is not easy to have to take ARV pills everyday. However, if you are on social media talking about HIV, you are an ambassador. If I am living with HIV and I come across such content, I will feel terrible about myself and my situation,” he said.
Most HIV positive content creators who were spreading more positive messages were from South Africa, Ghana and Nigeria.
“The only other creator I have seen doing a great job is Doreen Moraa, who uses her platform to educate people about the virus and her experience living with it,” he said.
Doreen, who has over 140,000 followers on TikTok, was born with HIV but was only diagnosed when she turned 13.
In most of his videos, Ruele is seen taking out a blue bottle of Acriptega pills that are free for people living with HIV. He then proceeds to take a pill and has since then attracted more than 8,000 followers and 50,000 likes on TikTok. At the end of every video, he asks his followers to suggest a place he should take the pills.
Since he started the campaign, he has taken the pill at Holy Family Basilica, in a matatu, Central Police Station and even at the top of KICC as per the request of his followers.
When I was recording the video at Central Police Station, my friend who acts like my cameraperson was not around so I asked a boda boda rider to record it for me. He asked what it was for. When I told him it was for a HIV campaign, he said that I did not look like someone who has HIV,” said Ruele.
His most viral video that has over 980,000 views shows him taking a pill at a cashier till at Naivas supermarket after buying a bottle of water.
“I received so many positive comments like someone who commented that my content had inspired them to start taking their ARV pills regularly. Another one said they were inspired to start living their life again as living with HIV was not the end of it,” he said.
But there are some negative ones, which shun what Ruele is doing but this does not stop him from encouraging more HIV-positive people to take their pills daily.
“It is not easy taking these pills in public and putting yourself out there bare for them to judge you. Sometimes I feel like maybe I went too far but the impact that I see it has had on others is worth it.”
He said most people who live with HIV are afraid to take medicine even in their own houses. “Some people still continue having unprotected sex with unknowing partners because they have not accepted their diagnosis.”
Ruele narrated how he learnt that he had the virus.
“In September 2020, my friends and I went to support a friend who was having a HIV testing drive. I had a test in August and the test was negative. In my mind, I was just expecting it to be a regular check-up. When the laboratory technician told me my test was positive, I told him to run it again. He did it again and it still came back positive,” he recalled.
Ruele tried to remember which of his partners could have infected him but it could not change the test results that transformed his life forever. The only responsible thing that he could do was to be honest with previous partners about his HIV status.
There are drugs that can be used for HIV prevention after possible exposure such as PEP (post-exposure prophylaxis). They are used for emergencies and must be started within 72 hours after a recent possible exposure to HIV, and PrEP (pre-exposure prophylaxis) is taken before possible HIV exposure.
However, it was too late for Ruele to use these methods. It was unfortunate that he was also unable to financially sustain himself at the time.
“On September 28, 2020, I took my first ARV pill at 10am. I did not take them because I had accepted my situation. I was still in denial but I took them because I realised that I was now vulnerable. Anything could attack my immune system easily. I was broke, had no medical insurance and I could not afford to fall sick.”
A strong support system made up of friends and family helped him pull through and find a reason to go on in those dark times.
A study by researcher Matt Pelton found out that the suicide rate for people with HIV is 100 times higher than the general population.
“What I thought was that my downfall literally gave me a purpose in life. I have had the chance to represent young people living with HIV locally and internationally. Honestly, I am just doing it scared. You still feel stigma even from educated people.”
He is a U=U ambassador for the African Forum, which is part of the Prevention Access Campaign. Undetectable equals Untransmittable (U=U) means that people with HIV can achieve and maintain an undetectable viral load by taking ARVs daily as prescribed and cannot sexually transmit the virus to others.
Ruele also runs a safe house for LGBTQ+ youth who are rendered homeless because they have been kicked out of their home by their parents, evicted from their houses or kicked out by their partners thus left on the street with no immediate support mechanisms.