HIV Stigma: Not Retro, Just Wrong (World AIDS Day 2016 Singapore)
HIV Stigma: Not Retro, Just Wrong
World AIDS Day 2016 – Singapore #HIVNOTRETRO
1st December is World AIDS day.
How fast another year has gone by and here we are again recognizing another World AIDS day.
This year’s theme seeks to remind us that the disease that we know as HIV/AIDS wears a very different face today compared to when it was first discovered in the 1980’s.
Back then the face of AIDS was a painfully skinny person lying on a tattered mattress atop a plain wooden bed in a straw hut. With flies buzzing around him and yet he cannot even muster the energy to swat away those that land on his skin. It was basically a scene of pathetic misery waiting for death.
Time portal to 2016 and the face of HIV/AIDS is a young, fresh looking energetic person successful, healthy, happy and eager to face whatever challenges life has in store. They are known as PLHIV – People Living with HIV. They are no longer people dying of HIV.
Advances in the medical management of HIV have led to people with HIV living near normal life spans. In fact, a recent study found that people living with HIV are more likely to die from other lifestyle related factors rather than the HIV infection itself. In other words no different from the rest of us. New Anti-Retroviral Medicines are more effective at keeping the viral load undetectable, have fewer side effects and require patients to take fewer tablets a day. HIV is no longer the face of death like it was in the 1980’s. With our current medical know-how, HIV is now an easily managed chronic disease. That has changed.
Unfortunately, what is taking a much longer time to change is the stigma against HIV the disease as well as people living with HIV. It is flabbergasting that in 2016, HIV is still viewed as a disease of the sexually and morally deviant and as a punishment from a higher power. HIV criminalization laws that make it a legal responsibility for people living with HIV to inform potential sexual partners of their status further legitimizes stigma and discrimination.
Stigma helps no one. It is obvious how stigma harms people living with HIV. What is less obvious is stigma harms our efforts in fighting the HIV epidemic. Stigma is a major barrier to people seeking screening. Stigma is a major barrier to access to care. Stigma is a major barrier to people enquiring about PrEP. Stigma jeopardizes one of the cornerstones of stopping the HIV epidemic and that is treatment as prevention.
It is not enough for us to be indifferent. Not stigmatizing the disease or the people living with it is not enough. We need to actively support research, advocacy and care for people living with HIV. Only then will barriers start coming down. Only then will people feel more comfortable coming forward for screening. Only then can we finally beat this epidemic.
Story of Mr. P (People Living with HIV – PLHIV)
One of the very first persons I ever treated for HIV was a young man named P. P made some dubious choices earlier in life as we all have. He partied a bit too hard and did not care enough about safety. After one particularly wild weekend in Thailand, he was found hallucinating about secret agents hiding in the walls of his hotel room. I suspect that this was due to his use of crystal meth but P never really admitted to it. Soon after that P started feeling very tried all the time. Funnily enough, the reason he came to see me was that he completely loss his libido. One test led to another and finally we discovered that he was infected with HIV.
P was prescribed HIV anti-retroviral treatment. Very quickly, his viral load dropped to an undetectable level and his CD4 cell count (his immune system strength) started rising again. Clinically P was improving and doing well. His energy level was back and he was back at the gym.
One day, I got a call from P’s friend. Let’s call him M. After P got his diagnosis, he found himself unable to live with his family. He was paranoid of passing HIV to them. Every night over dinner, he would imagine them staring at him and accusing him of being useless. P then lied to his family that he had been posted to work overseas and moved in with M. M came home one day and heard sobbing coming from the toilet. He opened the door and found the entire walls of the toilet bowl smeared with blood and P hugging it as if for dear life.
Fortunately, the cuts that P made on his wrists were not deep enough to cause any lasting damage. P was referred for psychiatric care and placed in touch with a counsellor. After a long time, P finally picked up the courage to come clean with his family. Unlike what P imagined, there was no anger, no blaming, no shaming and no accusations. There was a bit of fear. His parents and siblings came to me for HIV testing. Of course they were all negative for HIV. I spent some time educating them on how HIV is transmitted. I got the usual questions:
“Can we wash our clothes together with his?”
“Can we share food?”
“Even the soup? Can he use his own spoon to scoop the soup?”
“Generally not very hygienic but no risk of HIV.”
Maybe you have walked past P when you were walking down the road. You would not know. P looks like any other young healthy person happy going about his daily business.
P can teach us all a good lesson. In this modern day and age, it is not HIV that kills. It is the stigma and the fear it instils in people, especially people living with HIV that is the real danger.
Let us all work together to end the stigma against HIV.