Breaking down the stigma

HIV positive people now living 20 to 30 years after diagnosis

Published on December 1, 2008

Don Short works full time, teaches painting, has three kids and owns a house.

Sitting in an office at the Tommy Sexton Centre he sips on a large Tim Hortons coffee and talks enthusiastically about his job which includes developing and putting off programs for HIV positive people.

"It's been three years, January 2006," Short says.

He's not talking about his job, but in a way he is.

Don Short works full time, teaches painting, has three kids and owns a house.

Sitting in an office at the Tommy Sexton Centre he sips on a large Tim Hortons coffee and talks enthusiastically about his job which includes developing and putting off programs for HIV positive people.

"It's been three years, January 2006," Short says.

He's not talking about his job, but in a way he is.

"When the doctor gave me the news, the next day I was in the HIV clinic, so it's not like you're given a lot of time to process."

"Immediately you're given the information that you're going to live a long life, everything is going to be OK, there are medications. They explained the process of CD4 counts and viral loads and all that."

Short says that at 44 years old, he has realized that through HIV he has been able to bring together his skills as an artist and a teacher and use them for something he is passionate about - helping people with HIV, like himself.

"I have tough days, but it's more about my concern for people who are HIV positive that overwhelms me and that's only because I have a real personal connection with wanting to help people," he says.

"I want to be around for a long time and work and own a home and see my kids grow up, and have a good life. All that is part of my philosophy and my skills that I had has an educator before, now I want to bring into HIV education, meaning not just my personal story, but motivating people to take a hold of it and move forward and ride the wave," he says.

With advances in medication, Short says that all these things are now possible for people living with HIV who are now living 20 to 30 years after diagnosis.

"People with HIV are more independent now. They can handle their lifestyle whether that means working full time, they have kids, they can manage their homes and their relationships and there's a lot more information accessible through websites and the clinic," he says.

"And the medications work. The medications do keep the virus undetectable, so because the virus is brought down low and your CD4s are allowed to boost again, you have a longer life capacity span of time, and with that comes more responsibility and more independence."

CD4s refer to the part of the immune system weakened by the HIV virus, so when people have a very low count of these cells, and they develop an opportunistic infection, they are said to have AIDS - Acquired Immune Deficiency Syndrome.

In Newfoundland and Labrador, there are roughly 250 people who are HIV positive, Short says.

While people living with HIV today can be happy and healthy, the public stigma for people who have the disease is still great, and the effectiveness of medications could be leading to a sense of complacency about the disease that leads people to forego the necessary precautions.

Stephen Alexander, programs consultant at the Canadian AIDS Society, says the growing infection rate in women is concerning.

"We're not seeing the death rates as high as they once were, but now that's a double edged sword because AIDS still does kill," Alexander says.

"When the sense of urgency like that disappears, people tend to relax on their behavioral changes, but the prevention messages remain the same. We're seeing that the mode of transmission is unprotected anal and vaginal sex and injection drug use," he says.

Tree Walsh, co-ordinator of the Safe Works Access Program in St. John's says that needle exchange is in much higher demand than when the program first started, and that it's an important part of preventing AIDS.

"The prime reason needle exchange programs were established was to prevent the spread of HIV," she says.

"We don't encourage people to use drugs. People are already using drugs. It's controversial, but it's a very effective way to help people," she says.

With World AIDS Day, the Canadian AIDS Society has released a survey of people living with HIV, showing that stigma is still a huge issue for people with the virus.

Alexander says the stigma is so great, their survey shows that close to half of those surveyed have not told their co-workers of their status.

Further, he says of the 60,000 who likely have HIV in Canada, one third to a quarter likely don't know.

Christopher Pickard, executive director of the AIDS Committee of Newfoundland and Labrador says he hears all kinds of stories of stigmatization, including that a quarantine sign was put up on an HIV positive person's room in a hospital.

Even the building where he works is not immune, he says.

"We called a plumber and they showed up here at the Tommy Sexton Centre not knowing what we were, and when they found out what we were about they would not attend to our plumbing because he said, 'I might catch the AIDS,'" he says.

In the lobby work that the centre does, Pickard says they work to protect the privacy of people with HIV, especially in areas like the new electronic prescription system.

nbell@thetelegram.com