Longtime HIV/AIDS activist recognized

By Pratik Bhattarai, Local Journalism Initiative Reporter, The Eastern Graphic

Twenty-one-year-old Troy Perrot was shellshocked when he found out he had tested positive for human immunodeficiency virus (HIV).

That was back in 1993.

“I was devastated. I was told I had about three to five years if I was lucky. So, I kind of shut down for the first six months to the first year,” Perrot said.

“I was just waiting to die. I was afraid to even go to sleep at night because I thought I was going to die overnight,” he added. 

He then decided he had to find something to do to lift his morale and began volunteering at AIDS PEI, which helped him  become more educated on the disease. 

The Montague resident became the acting executive director after a few years of working, but that did not last too long due to his deteriorating health. He had to go on permanent disability and went to Halifax for HIV treatment.

He took part in a lot of clinical trials.

“I was like a guinea pig for HIV treatment,” he said.

In late 1996 he started combination therapy and after six months his health started to improve and returned to volunteering at Aids PEI.

He said during the 90s and early 2000s there was a lot of stigma attached to HIV and AIDS.

Perrot, who was bullied growing up for being gay, now had to tackle society’s negative view on the disease.

“In those days it was called GRID, gay-related immunodeficiency, in North America,” he said.

Getting access to medicine for HIV was difficult not just in rural PEI but also in Charlottetown, he said.

“We were fighting for access to medication. Getting HIV meds included on the formulary so that we had access to these medications when they became available,” he said.

Before the medicines were included in the formulary, only those people who had expensive health insurance could afford them, he said.

Access to medication has become a lot easier now, he said, adding there is still work left to do.

“To this day in my HIV meds, I still have to get them through the provincial pharmacy in Charlottetown,” he said.

Eventually his advocacy took him to the Canadian AIDS Society where he sat on the board working nationally as well as locally.

Initial days of activism were a lot of “quiet activism,”he said noting they had to spend a lot of time learning about the healthcare system, meeting government officials from different departments, pharmaceutical companies and building relationships with the people who were in position to make decisions.

He also organized presentations at hospitals and schools  that would raise awareness about the disease.

“I learned a lot about how drugs get into the research stages, the clinical trials and how to access those clinical trials. Sometimes that’s the only way to get access to a medication, “ he said. 

By 2011 Perrot’s health started deteriorating again after getting a degenerative disc disease which started giving him back problems. It led to trouble walking and eventually shrinking his height.

He had to permanently retire when he was working as an art gallery manager. Since then, he has been volunteering every now and then.

Even after years of activism for HIV and AIDS he is still dealing with discrimination and insulting slurs.

“You’re just not made feel welcome. You’re just quickly rushed out of some places. It happens in many ways, but it does happen still. I’m much more comfortable being who I am and just not caring about what other people think, but it still hurts in some ways,” he added.

Sometimes it’s the lack of education, lack of exposure to gay people or people’s masculinity being threatened by gay people, he added.

His activism regarding HIV did not go unnoticed. Last year he received the King Charles III Coronation Medal for work don with regards to HIV.

He said someone working at PEERS Alliance, formerly AIDS PEI, nominated him for the award.

He was surprised with the nomination and felt like a lot of his peers also deserved recognition.

The medal was presented in December 2025.

“The fact that it was the lieutenant governor, who actually took the time to come and do it, that meant the world to me,’ he added.

He said there is still a lot of work needed to be done regarding HIV and AIDS. There is still  a lack of information and a lot of misinformation regarding the subject.

Perrot wants people to know that “undetectable equals untransmissible” which means if someone’s HIV viral load is considered undetectable, which modern medicines have been able to achieve, then they cannot transmit it to others.

There are drugs like pre-exposure and post-exposure prophylaxis available on the Island, which people can take to prevent the virus.

He is happy PEERS Alliance successfully grew out of the Aids PEI organization that started with only a few workers and volunteers. Now the organization becoming one of the most successful in the country means the advocacy he spent his life doing is in good hands.