PEI

Islanders living with HIV share their stories on World AIDS Day

Islanders living with HIV join Island Morning to discuss their lives and experience living with the disease.

'We know that at least 20 per cent of people living with HIV don't know their status'

From left, Tom Hilton, Cybelle Rieber of PEERS Alliance, and Vance Ford. (Mitch Cormier/CBC)

Tom Hilton was living in San Francisco when Magic Johnson shocked America.

It wasn't one of Johnson's signature layups or flashy passes. It was in 1991 when he, one of the greatest NBA players in history, announced he had contracted HIV. 

Hilton recalls those days in California vividly. Right around the time of Johnson's announcement, the expat Islander was experiencing night sweats and a sickness like never before. 

"Holy cow," he recalled thinking. "If Magic Johnson can contract HIV, I sure as heck can contract HIV."

Within a day it went from whoever was in the room or at the hospital, word got spread through the system. It just went so fast.—Vance Ford

What he quickly realized was that he likely had the disease too, but that his testing "absolutely positively had to be anonymous" — a critical first step for anyone, he said, who believed they could have the disease.

"I fully anticipated that I was going to be positive, but I needed to know that I was the only person who knew that so that I could work through it in my way on my time," he said.

Now 52 years old, Hilton has moved back to P.E.I. and has spent half his life living with HIV.

With World AIDS Day on Friday, he and another Islander spoke to CBC's Island Morning about their experience living with the disease.

Anonymous testing 'fundamental part of any strategy'

"I have to believe that anonymity is an important factor for a lot of people. Without anonymity I would not have got tested, I know that," Hilton said.

It's for that reason, he added, that "why on Earth there is no anonymous testing on P.E.I." is something he can't answer. 

"If you take my story and multiply it, about the importance of anonymity, that has got to be a fundamental part of any strategy to facilitate people taking that step of getting tested."

On Prince Edward Island there is no anonymous testing and it's a fight that PEERS Alliance, formerly AIDS PEI, has been waging for for a long time.

According to Cybelle Rieber, executive director of the PEERS Alliance, without anonymous testing Canada will struggle to meet its commitment to the United Nations.

In 2015, Canada committed to the UN's 2020 goal of having 90 per cent of all people living with HIV knowing their HIV status, 90 per cent of people receiving antiretroviral therapy and 90 per cent of people receiving therapy to have viral suppression.

We know that at least 20 per cent of people living with HIV don't know their status — If we don't up testing here … then we are not going to reach that.—Cybelle Rieber

"If we hear on P.E.I. want to be part of that 90-90-90, and as a Canadian province … testing is a huge piece of that," Rieber said.

"We know that at least 20 per cent of people living with HIV don't know their status. If we don't up testing here … then we are not going to reach that."

'If I could have kept that to myself'

Vance Ford was one of the Canadians who didn't know his status. He learned he had the virus on New Year's Day in 2001.

Ford said he had a history of drug use and has been in and out of jail. At the time of his diagnosis he was at the Provincial Correctional Centre at Sleepy Hollow.

After having a seizure in jail, he was rushed to the hospital and told of his diagnosis. It soon seemed like the world was judging him, he said.

World AIDS Day takes place every year on Dec. 1.

"The situation I was in, the lifestyle I was in, within a day it went from whoever was in the room or at the hospital, word got spread through the system. It just went so fast," he said.

"It leads into the stigma attached, if I could have kept that to myself and it didn't go through the community so fast, I wouldn't have the stigma that's been attached with HIV."

Asking for more to be done

In addition to anonymous testing, Hilton and Ford are pressing for several other accommodations for Islanders with HIV.

Hilton, for example, said he spends roughly $500 every year to meet with a doctor in Halifax for about five minutes. He said the province would be better off hiring its own specialist or at least have some sort of online program to meet with a doctor.

Rieber also said more can be done regarding needle exchanges, as sites outside of Summerside and Charlottetown are underutilized. She said that may have to do with longer hours and more available days to exchange needles.

In the absence of anonymous HIV testing on P.E.I., she said there is something called non-nominal testing, where the test is assigned a number, rather than a name, which she said "is a step in the right direction."

Corrections

  • A previous version of this story said the province could explore doing non-nominal testing. In fact, non-nominal testing is already available in P.E.I.
    Dec 01, 2017 8:28 AM AT

With files from Mitch Cormier

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