The longest surviving person with HIV in Africa: Defying the odds and fighting the stigma
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Johannesburg - He was once called “dead man walking” and now he is the longest surviving person with HIV in Africa. Ntimbwe Mpamba was born with HIV in Kitwe, Zambia in 1982 and while he admits he has been at death’s door many times he is a living reminder of the scientific strides made in treating HIV.
As we celebrated World Aids Day this week, the World Health Organisation ( WHO) said we were off track from delivering on the shared commitment to end AIDS by 2030.
In 2020 there were 37.7 million people living with HIV globally, 1.5 million new HIV infections and 680 000 AIDS-related deaths.
Around 65% of HIV infections around the world were among certain key populations including sex workers and their clients, gay men and other men who have sex with men, people who inject drugs, and transgender people and their sexual partners.
Mpamba was only diagnosed with HIV in 2005 at age 23 when he fell ill and lost three quarters of his left lung and went blind in his right eye.
“At that time we did not know what was wrong with me. My mom passed away in 2004 and my dad in 1995. My dad died from meningitis and my mom had a TB relapse. Both are opportunistic diseases associated with HIV. I started treatment in 2005 and I am the picture of health now, thanks to the treatment,” he said.
Mpamba reflected on the early days of his diagnosis, remembering it was scary but at the same time exciting because he was starting treatment.
“My health was so bad. I was told in 2004 that based on blood tests, I should have died already. It took me five years to come to terms with my status but once I did that, there was no going back. This HIV world can be harsh.
“I feel that at times, patients still do not have a voice. Still not enough is being done to reach young people. If the same efforts were put into HIV/AIDS like we are seeing now with Covid-19, we could’ve eradicated HIV/AIDS in the 90s already,” said the now HIV activist.
These days, Mpamba spends his time doing motivational talks, life coaching and outreach programs.
“I am changing lives every day. I live a healthy life now. I have a partner, who is HIV negative and life is good and fulfilled. I want to say to everyone that it's important to know your status. Know where you are going. It starts with you.
“Right now I am running the ABC Bootcamp focusing on HIV, TB, Covid-19 Awareness, Drug and Alcohol Abuse Awareness, Teenage Pregnancy and life coaching to support communities, ” he said.
And while the WHO laments the slowed pace in the fight against HIV/AIDS, young activists across SA are out in the trenches daily spreading their message of testing and treatment, prevention and knowing your status.
Mongezi Sosibo,30, was diagnosed with HIV in 2012 and said he found “healing” after declaring his status to his family.
“I wasn’t alone. I quickly made friends at a support group. I told my parents and my partner. It was difficult but it was necessary. I remember how my mom pretended not to hear me when I shared my status. According to my family, I did not even have a girlfriend at the time,” he chuckled.
To add to his woes, Sosibo was diagnosed when he was completing his matric year. He also has Spina bifida and clubbed foot.
“I am glad that I am over that part now. I believe there’s still a stigma around HIV/AIDS and this is why many young people are not getting tested and not declaring their status. HIV teaches us to live healthy lives,” he said.
Sosibo, a Transnet Ambassador for people with disabilities, has written a book, ’In heaven there is a hell (2019)’, said he could not overemphasise the importance of knowing your status.
“People are becoming complacent about HIV/AIDS. I still hear people joking about ARVs. We are past the stigma stage. We all have to be cautious when it comes to our health,” he said.
Tshepo Ngoato, 30, was born with HIV and learnt of his status at the tender age of 10.
“I spent six months in hospital. I had TB that just didn’t go away. After all the tests and when doctors couldn't find a cause, one doctor suggested we test for HIV,” he said.
All three activists publicly declared their HIV status on TV in the hope that it would encourage everyone to get tested and start treatment if needs be.
“I know of so many young people who do not declare their status and don’t take their treatment. They have an internalised stigma about HIV. I even know of young people who hide their ARVs in empty roll-on bottles so that their friends won’t find out they are HIV positive,” he said.
Ngoato runs a support group for HIV positive youth which he started in 2008, and is now 160 strong.
The one common thread Mpamba, Sosibo and Ngoato share is Dr Kairoonisha Mahomed, whom all three have referred to as their “favourite human being”.
Mahomed runs an HIV testing clinic at the Netcare Garden City Hospital but was a stay-home mom before the world of HIV/AIDS care opened up for her in 2005.
“I was at the gym watching my kids have their swimming lesson when an acquaintance came up to me and asked if I would rather not do something more useful instead of watching my kids swim at the gym,” she said
Mahomed then started doing something more “useful”at the Helen Joseph Hospital where she started her journey into HIV testing, treatment and prevention.
“SA has made such huge strides. We have reduced Mother to Child Transmissions from 25% to 2%. The drugs are just unbelievable. When we started, patients had to take a cocktail of drugs up to twice a day. Now they take just a single tablet daily. We are in a wonderful smart era,” she said.
The good doctor reminded South Africans that there were also medicines available for HIV negative people.
“If you are undetectable, you cannot pass HIV on to anyone. You can get tested and treated at any government hospital. The drugs are really so potent. There are no side effects compared to he drugs of a few years ago,” she said.
Mahomed, Mpamba, Sosibo and Ngoato said while Covid-19 was uppermost in most minds, the fight against HIV/AIDS must not be left on the back-burner.