Double the stigma

While the rest of the province has seen a decline in HIV rates, alarm bells have been ringing in London as the prevalence of HIV among intravenous drug users has surged. In the past 10 years, a staggering increase has been seen in HIV, and hepatitis C rates have remained high, leading the Middlesex-London Health Unit to declare the problem a public health emergency last summer.  

The Infectious Diseases Care Program of St. Joseph’s Health Care London currently provides care to more than 600 individuals with HIV, either through partnership outreach initiatives or at St. Joseph’s Hospital. Of those, nearly 200 are injection drug users, many of whom struggle day-to-day to look after themselves, with double the stigma of addiction and HIV, and with a profound sense that they don’t matter. 

Those on the frontlines see the challenges up close every day, but for most Londoners, these individuals remain faceless. Andy, however, would like Londoners to know his story. He wants them to understand that his life of addiction and now HIV is not one he chose for himself. At age 60, after a lifetime few can imagine, Andy is hoping that people can begin to see him, and others, as they walk past. 

walking on street

There are days when Andy closes his eyes “and all hell breaks loose.” On those days he slips, turning to what has always worked to extinguish the memories and muffle the turmoil – drugs. 

On those days, taking his HIV medication on time is not top of mind. On those days, Andy is barely surviving. “I get caught by my old life.”

The ‘old life’ is one of intravenous drug addiction – any drug, as long as it can be injected. At age 60, the ‘old life’ has been a long one – decades of drugs that began when he was only 14, countless stints in jail, and a lifetime of feeling that he didn’t matter. 

Andy isn’t sure when he contracted HIV from intravenous drug use. It could have been anytime. He was diagnosed, however, in 2011 or 2012, and has been coming to St. Joseph’s Infectious Diseases Care Program for the past five or so years. For the most part, he has been diligent about his care and his HIV has been undetectable. But when that old, chaotic life rears up, looking after himself is not a priority and the HIV viral load, he says, “has broken through.”  

“I don’t know if I’ll ever be free of my addiction – if I will ever be cured of my past,” says Andy.

“Like most addicts, I want a normal life, to be treated like somebody. Not extra, just somebody. We are willing to do what it takes but we don’t know how. Sometimes the tools you get growing up aren’t the tools you need to succeed in life.”

Andy’s childhood, he explains, was one of horrific physical and sexual abuse. He missed so much school from his injuries that he failed Grade 2. By adolescence he was hardly attending class and has only a few high school credits under his belt. The drugs – and jail time for violence and robbery – started early.  

“If I could do drugs or drink, then my mind was somewhere else and I could get through it,” says Andy, who was eventually diagnosed with post-traumatic stress disorder due to the abuse he suffered. 

holding hands

When Andy’s then-girlfriend landed in hospital for endocarditis – an infection of the heart valves or heart lining often linked to the use of contaminated needles in injection drug users – she was given an HIV test and it was suggested he get one too. Despite his drug use, the positive results surprised him.  

“I always thought it was a gay man’s disease. There is still a huge amount of ignorance among users around HIV transmission."

But with the diagnosis, Andy’s life began to change. A turning point was when a worker with the Regional HIV/AIDS Connection (RHAC) in London travelled to see his girlfriend in the hospital, which was out of town. 

"I thought that was odd – that someone would drive that far to see an addict. Usually, no one sees an addict. They walk right past them."

When Andy moved back to London a short while later, he dropped into RHAC to learn about HIV. He would discover a network of people who made him begin to feel “like somebody.”

“I remember someone asking ‘how are you’ and then just standing there, waiting for an answer. I can’t remember anyone ever asking me that and wanting to hear the answer.”

The added burden of HIV for a struggling addict brings a host of new challenges faced daily, says Andy, who now works at RHAC distributing clean needles and as an outreach worker on the street.   

“When people hear that I’m an addict and HIV positive, they shy away. They have actually taken a step back or moved across the room. There is so much stigma and discrimination around addiction alone, and then you add in HIV. The message you get is that you caused your condition, that it's self-inflicted.” 

Most of the addicts Andy has known have lived through abuse leaving emotional and psychological scars that last a lifetime. For this 60-year-old, some of those scars remain raw today and, in a blink, can transport him back to his childhood – still.  

“The school insisted, because I was a behaviour problem, that I see a psychiatrist. I remember sitting there with my mother. The doctor looked at me, looked at my mother, and said that I was ‘unfixable.’ I was 10 years old. I can still remember how his voice sounded when he said it. I hear it in my head. I’ve carried that with my whole life. Unfixable."

On the streets, Andy educates intravenous drug users on what has been learned from recent groundbreaking research in London that has shed light on the rise of HIV. A citywide team of researchers is linking the transmission of HIV, endocarditis and hepatitis C to the way Hydromorph Contin is being used. Andy is among those helping to get the word out about what intravenous drug users can do to prevent the spread of these infectious diseases. 

The battle to curb both the HIV surge and raging intravenous drug use in London is being fought collaboratively on many fronts by community agencies, health care professionals and researchers in the city. It's a complex problem requiring some big solutions, but Andy reminds Londoners that the smallest gesture can also have a profound impact. 

"A smidgen of common courtesy can go a long way. We are often treated 'less than' and in that moment any self-esteem you managed to gather is stripped away. When you walk by us, look us in the eye. We may be rough around the edges but we are not bad people. No one in Grade 4 puts up their hand and says they want to be a prostitute or a drug addict when they grow up. Sometimes, you do what you have to do to survive. I may never be totally clean. It will always be a struggle. But everyone in this world has a struggle. It was a little thing that changed my life – someone stopped and cared, and made me feel that I mattered."

walking across a bridge

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