KUALA LUMPUR, April 8 — An HIV activist related how back in 1994, a Selangor State Health Department official told his mother not to rent him a room because he suffered from AIDS.
Andrew Tan, vice president of non-profit Kuala Lumpur AIDS Support Services Society (KLASS), said the health official had called his home and asked his mother if he lived there, to which his mother, mistakenly believing that the government officer was a salesman, responded by saying that Tan was merely renting a room.
“He said, ‘Then don’t rent a room to him, because he has AIDS’,” Tan told radio station BFM’s Health & Living 2019 conference here last Saturday.
“Now I don’t know this person, this person does not know me. But somehow, he decided that it was all right to destroy my life. I don’t know how many people he did that to. But I was angry.”
He then lodged a complaint with the Health Ministry.
When the first AIDS cases were reported in the 1980s, the disease and the HIV virus were poorly understood, as fear and panic about the epidemic led to prejudice and discrimination, especially against gay people and drug users. By 1993, more than 2.5 million HIV/AIDS cases were reported worldwide.
Tan said that back in the 1990s, the Health Ministry had protocols for privacy, but that particular official “thought differently”.
“It’s not the fault of the ministry; it was an individual acting alone,” Tan told CodeBlue after the conference.
The activist, who turns 59 next month, said such sensitive data is better protected in the Health Ministry now, as doctors do not share HIV files with other departments.
The HIV activist also told the BFM conference that when he received an HIV diagnosis in 1994 at a private hospital in Petaling Jaya, his doctor said, “Andrew, I’m afraid to tell you that you have HIV”.
“In the next breath, he told me, ‘You can be discharged now’.”
Tan said the doctor did not tell him about treatment options, hospital referrals, or support groups.
“He just wanted to be rid of me as quick as possible.
“I wasn’t quite sure whether he realised that that had such a profound effect on me, that it impacted my own self-worth. Maybe he did, maybe he didn’t care. Maybe he already decided I wasn’t worth saving.”
The KLASS vice president related another story about the dentistry department of a “major hospital” when he sought dental treatment and told the person in charge of making appointments that he had HIV.
“I told her that I had HIV and maybe she could use me as an example to train the students, the new dentists on how to take precautions and make sure that everything is sterilised properly. So I thought I was doing something good.
“Instead it backfired. She kept on postponing my appointment, she said there was no one to treat my case.”
Tan said these three people had different backgrounds, culture and values, but they all “decided that I was not worth their time”.
He said that back in the 90s, medicine cost about RM2,000 a month, comprising almost 20 different types of drugs.
“Some medicines [I had to take] every 12 hours, some medicines every eight hours, some medicines had to be taken one hour before meals. Literally you could not forget that you were HIV positive. You were not allowed to forget,” Tan said.
But nowadays, HIV/AIDS treatment only comprised two tablets a day and enabled patients to reach a well-suppressed viral load and to avoid transmitting the HIV virus to their sexual partner.
“So treatment has changed a lot. But the attitudes of the people around us still need a lot of work,” said Tan.
The HIV activist pointed out that insurance companies still do not cover people living with HIV.
“If a company sold me a policy after my diagnosis in 1994, they would have made almost 26 years of premiums. If you multiply that with the number of people living with HIV at the end of 2017, over 95,000 people in Malaysia are still living with HIV. That’s a really untapped market for any insurance company.”
New HIV infections have fallen in Malaysia, declining by 42 percent from 5,830 cases in 2006 to 3,397 cases in 2016.
Health Minister Dzulkefly Ahmad reportedly told Parliament last December that sexual intercourse was the main cause of HIV infections in Malaysia, rising to 91 percent in 2017 from 33 percent in 2002. Only slightly over half, or 54 percent, of people living with HIV in the country received antiretroviral treatment by the end of 2017.