Things HIV-positive man thought he was long past dealing with, became issues again
© Diane Crocker
Robert Alexander, chair of the AIDS Committee of Western Newfoundland, is a long-time advocate for people living with HIV and AIDS. He has been living with the virus for 29 years.
CORNER BROOK — In advocating for people with HIV and AIDS, Robert Alexander has often talked about issues that impact people living in rural communities.
Now the 48-year-old HIV positive man is finding out what it’s like to live with those issues.
“And being in the situation where you’re living it, is completely different than talking about it,” he said.
Up until a year ago Alexander was living in Hamilton, Ont., where he had been long past dealing with issues related to being gay and to his HIV status. He has been HIV positive for 28 years. But that changed when he and his partner Donald, who is from this area, decided to relocate to the city.
Alexander’s previous partner Michael died of spinal cancer two years ago. The men had been together for 20 years, had married and shared in the raising of Alexander’s son. When Michael died, Alexander said he was not looking to meet anyone else and figured that part of his life was done. It was by chance that he met Donald.
The couple moved to Corner Brook last November.
Alexander is a social worker and before moving here was working as a professional associate with the School of Rehabilitation at McMaster University. A lot of his work focused on the areas of rehabilitation issues for people with HIV and AIDSs (PHAs). He also worked on an interprofessional health-care program that was patient-centred for people with episodic disabilities, including HIV, AIDS, cancer, multiple sclerosis, depression and addictions.
He said making the move involved a lot of preparation.
“Obviously because living with HIV, I needed to ensure that I would have access to my treatments and physicians,” he said.
The first obstacle he had to overcome was everything related to HIV and AIDS care in this province is based in St. John’s.
“So I discovered very quickly that Corner Brook and the western side of the island is very restricted.”
This was kind of shocking to Alexander after coming from Ontario.
“Where you can walk out your front door and within five minutes you have access to an HIV clinic, or pharmacy or pharmaceuticals,” he explained.
He eventually connected with the HIV clinic in St. John’s, from where his treatment is monitored. A clinic team makes two visits a year to Corner Brook to meet with west coast patients at Western Memorial Regional Hospital.
The next hurdle came in getting his medications.
In Ontario his medications had been covered, but in Newfoundland he had to “jump through hoops” and go through a review process that would decide if he would have access to the medications he needed, and how much they would be covered.
Once he got that straightened out, he had trouble finding a local pharmacist familiar with HIV medications and treatments and ended up having to have his drugs shipped from St. John’s. He’s been on the same regime for a while so issues with sideeffects are behind him.
“But then the issue becomes what about somebody in this community, or this area, who may be newly diagnosed and newly starting a treatment and is reacting and don’t have the pharmacist and the supports here,” he said.
Even though it’s been difficult and challenging, Alexander said he likes to take challenges and use them for educational purposes.
He connected with the AIDS Committee of Western Newfoundland shortly after moving here and quickly got involved with its activities, but more on the periphery.
As the group made plans for this year’s AIDS Walk, Alexander recalls a discussion with members about how great it would be if they could focus on somebody living with HIV.
Alexander was prepared to be that person, because that’s just what he would have done in his old life in Ontario.
However, Donald had some apprehensions. You see, up until probably right now, his family didn’t know that Alexander is HIV positive.
In all the adjustments he’s had to make living here, stepping back from something he believes in so much became one of the most difficult things he’s encountered.
'Not who I am ... '
“My HIV is not who I am, it’s a part of my whole life,” he said.
But he knew he had to stop and think about how it would impact Donald and his family, so he took a bit of a step back. In the meantime, the couple had also gotten involved with the local Pride group and started to become more integrated and involved in the LGBTQA (Lesbian, Gay, Bisexual, Transgenered, Questioning and Allied) community. Alexander said this has helped Donald with becoming more open.
Last month, Alexander became the chair of the AIDS Committee of Western Newfoundland and also sits on the board of the AIDS Committee of Newfoundland and Labrador.
Before taking on the role, he talked with Donald about how it would mean he would have to be more open as a spokesperson. Donald gave his approval, saying they will deal with whatever reaction Alexander’s openness creates when it happens.
While he is somewhat apprehensive of what the reaction will be, Alexander is prepared to handle it and knows he’s sharing his story for a good reason.
He said it may be an opportunity for others living with HIV and AIDS in isolation to come forward.
In the new year the AIDS Committee of Western Newfoundland will be doing some strategic planning and development aimed at creating community outreach initiatives that will provide people with HIV and AIDS to come together for networking and social opportunities.