cured of hepatitis c, here's how this woman survives the stigma of drug use

hepatitis c is a blood-borne virus that attacks the liver. approximately 80 per cent of patients with hepatitis c will not experience symptoms until their livers have been severely damaged , with conditions like like cirrhosis or cancer. in 2018, the canadian government reported 33.6 cases of hepatitis c in canada per 100,000 people.

tell me about your diagnosis.
i was diagnosed with hepatitis c in january of 2017. i don’t know the exact genotype, but i do know is that it wasn’t the normal genotype for this [part] of canada — it was actually a type more commonly seen in africa. the doctor was pretty curious about who i came in contact with that could have [passed it to me], but i had no clue.

what led to you being diagnosed?
i am a person who uses drugs. i was a person who injected drugs. i was a person who engaged in sex work. i was experiencing hidden homelessness. i grew up in northern alberta where drug use is bad and so are the people who use drugs, so i didn’t get much harm reduction training or anything like that. i didn’t know about safe drug use when i started injecting.

when i decided to get into recovery — to stop using iv drugs — i went to a treatment centre. but before i went, i had to go see a doctor and get a medical intake form — and this is in southern alberta where the stigma towards drug users is really bad. i went into the centre with the piece of paper, and in the hepatitis c/hiv part of it, the doctor just checked off ‘no.’ there were no tests or anything — i trusted the doctor knew better than me. i was like, well, i guess don’t have hepatitis.

i had only just started learning about harm reduction and using clean needles near the end of my iv drug use. i had met up with somebody who said, ‘ whoa girl, you’re gonna get something or you’re gonna kill yourself, one or the other .’ she taught me proper injection methods, and i’m really thankful. and i thought that i got away from my drug use without getting hepatitis c.

did you have any symptoms?
i have thought about that question a lot: ‘did you have any symptoms?’ i was coming off of some pretty hard drugs at the time. there’s post-acute withdrawal syndrome , and [mine] was pretty bad. sometimes i wonder if part of the reason it was so bad was because i had hepatitis c — maybe i was fighting more than the toxic drugs leaving my system.

what was the treatment?
[it was an oral medication] called epclusa (sofosbuvir/velpatasvi). i took it for about 12 weeks, and i was cured. that was in august of 2018.

there are [global] goals [ to eliminate hepatitis] by 2030 , but to do that there needs to be testing. and also links to care. the baby boomer population are the least likely to get tested for hepatitis c, but the most likely to get treated. and while people who use drugs are the most likely to get tested, they are the least likely to be treated.

cured of hepatitis c. i had no idea that treatment was so far advanced.
yes, the medication has something like a 95 per cent cure rate — even for people who use drugs. the medications are effective. and if you talked to somebody who was treated for hepatitis c back when interferon was being used [a drug often administered by injection and has brutal side effects ] they don’t want to consider treatment again because the experience was so bad. thank god we’ve come so far.

what goes through your head when one doctor has told you that you don’t have hepatitis, but then another doctor tells you that you tested positive?
it shouldn’t matter if i’m a person who uses drugs — the doctor could have taken a couple of extra minutes [to test me]. i was really disappointed in our medical system.

how has covid impacted hepatitis treatment programs?
with covid, i watched everything get put on the back burner. many hepatitis c projects were put on hold — testing and treating even stopped at one point. so you might have somebody who’s thinking about getting treated, but then testing isn’t available. we’ve got to have those options available for people when they want it — in that moment.

tell us more about how the stigma of using drugs has affected you.
you know, for the most part, i wasn’t really bad about sharing needles. but there was this one night that i can remember when we ran out of pins and i was so high that i didn’t know what was going on. this guy was reusing needles and i was sex-working at the time. i came out of there thinking that i probably got something.

so when that doctor [in alberta] said, ‘this isn’t the normal genotype, it comes from this part of africa, and i’m really interested. can you get a hold of the person? ‘ i thought, are you kidding me? do you understand the lifestyle that i lived? here i am, i just got out of an abusive relationship, i was dealing with my past as well as the stigma of being a person who engaged in sex work. it triggered trauma for me.

how are you doing now?
i had four and a half years without using iv drugs, and then about a year ago i started using again. my partner, who i met in recovery, had started using again and brought drugs back into my house. at the same time, my mom got a cancer diagnosis. i thought i could just use for a couple of days. then, a couple of days turned into a year.

what’s the role of education in helping people who use drugs?
i went to a catholic school in northern alberta where there was no talk about hiv or hepatitis c. so when i started injecting drugs in the closet at my house, trying to make sure that my mom didn’t find out, i didn’t have a clue what i was doing.

here in british columbia, the government is creating curriculum around drug use and harm reduction for kindergarten and school-aged kids. i think that’s really important. i go into the schools and do naloxone (a drug used to reverse opioid overdoses) training. but i don’t think anybody’s going in and talking about hep c. i hope they are talking about it in health class because substance use doesn’t discriminate. i grew up in a family where my dad was an alcoholic, my mom was a crazy control freak and drugs were bad, [but] that just made them seem more sparkly. it was like, oooh, i want to go out and try this . because i had a pretty traumatic childhood, when i found drugs, they made me feel better and helped me socialize.

how did you start working in harm reduction?
i was taking some time off work and i had started an instagram page called harm reduction saves lives . my partner encouraged me to go to a community action team meeting to let them know about the page. i had been hanging out with people [in my community] where there was a lot of drug use, and nobody had a naloxone kit.

readers interested in learning more about hepatitis c can check out the community aids treatment information exchange (catie) and the podcast hep c 101. jessica also operates the instagram page @harm.reduction.saves.lives  

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com or on twitter @jonesyjourn

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cured of hepatitis c, here's how this woman survives the stigma of drug use

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