living with hepatitis c: how outreach and education is the first step to eliminating 'curable' disease
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“i still get my test every six months to make sure i don't have the active virus in my system and i feel a lot better," says matthew bonn, who lives with hepatitis c.
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matthew bonn has fought through stigma and barriers to get clean and sober. his addictive drug use set him on an uncertain path of living in and out of shelters, trying rehab programs and sharing a needle that caused the transmission of the hepatitis c virus. the infection can damage the liver, putting you at risk for chronic liver disease and liver cancer—if it’s not detected and treated.
“it’s a virus that you contract through blood-on-blood transmission. i contracted mine through injection drug use. and i think one of the big misconceptions about hep c is that it’s not curable. you know, it’s completely curable,” says bonn, 36, who lives in halifax.
“we need to spread more awareness about hep c and some of the transmission routes and risk factors.”
advocates like action hepatitis canada, a coalition of canadian organizations, are committed to holding the government accountable to eliminate viral hepatitis as a public health threat by 2030. bonn says outreach and education is the answer to reaching that goal.
hepatitis c diagnosis led to outreach
for his part, he is open and candid about his health challenges, trying to raise awareness about hepatitis c and inform public health policy. he works in harm reduction and drug policy as a drug culture advisor with changemark research and evaluation. he’s also a board member of the international network of health, hepatitis and substance use (inhsu), a global network to improve the health of people who use drugs and educate about the harms.
he wants to change outdated thinking around hepatitis c so that people will get tested and treated like he did more than five years ago.
“you take a medication once a day for eight to 12 weeks and you can suppress your viral load. so, i’ll always have the antibodies for hepatitis c in my system, but i don’t have the active virus, so i can’t transmit it to anyone else. i think that’s really important.”
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while there’s no vaccination for hepatitis c, once detected, the treatment for the viral infection is safe and effective; the direct-acting antivirals are in pill form and have very few side effects. but prior to the current antivirals, another treatment was used with weekly injections. it had a low cure rate and severe side effects, short-term and long-term, and patients were monitored by hepatology specialists.
barrier to care: screening is risk-based
now primary health-care professionals can treat and follow patients with hepatitis c. it is considered the only virus that is curable, but health experts say the uptake of effective screening and treatment is still suboptimal, and hepatitis c guidelines suggest more needs to be done to promote testing for early detection.
screening for hepatitis c is risk-based, so you have to disclose your risk to a provider before they will offer you a test, and that is a barrier to getting diagnosed.
“we need to make testing more available to people and consistently test people. it should just be a part of health care. everybody should get tested every six months for hep c, regardless of if you have a risk factor or not,” bonn says.
one recent trial of a peer-led telehealth program for hepatitis c treatment among people who use drugs in rural oregon showed how effective support and outreach can be.
telehealth appointments were available same-day, and peers acted as connectors for participants and the clinical team, also supporting the process by helping with insurance, appointment attendance, medication access and links to social services like housing. as inhsu reports, the results were dramatic with 85 per cent initiated treatment (vs. 13 per cent in usual care) and 46 per cent completed treatment (vs. 9 per cent).
misperceptions breed stigma and fear
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bonn explains that there’s a weight that comes with hepatitis c from misperceptions that it can be spread by casual contact, kissing or sharing food or utensils, or that’s it’s much like hiv.
hepatitis c is contracted through blood-on-blood transmission that can happen in a number of ways. sharing needles or drug equipment is one, but also nonsterile tattooing or piercing equipment, cutting rituals of certain cultures and medical procedures with unsterilized equipment. sexual transmission can happen, but it is much less common.
he has faced stigma and disregard of his health concerns, even in vulnerable moments when he’s reaching out for help. those experiences have shaped his advocacy today.
“it’s so important if we want people to feel comfortable and access health care and talk about things like hiv or hepatitis c, we have to be welcoming, non-judgmental and non-stigmatizing. there’s been times where i go into doctors’ offices, and they just treat me like the disease, right? they might not say anything directly stigmatizing, but their body language shows it all. they’re not open, they’re distracted,” he says.
“this is such a pivotal time in somebody’s life. they’re finally reaching out to get help and that first kind of point of contact needs to be welcoming, caring, non-judgmental, or somebody may leave that appointment and never go back.”
bonn was living in a substance use treatment centre when he was treated for hepatitis c in 2019. often, the viral infection is asymptomatic. bonn woke up one day with an itchy rash on his body that was attributed to compromised immunity. he was tested for hepatitis c and treated, and he’s been clear ever since.
regular testing for ‘peace of mind’
“i still get my test every six months to make sure i don’t have the active virus in my system and i feel a lot better. the big piece for me is just knowing that i don’t have it and i can’t transmit it to other people. it allows me to have some peace of mind.”
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a doctor that he knew asked him to share his story about living with hepatitis c with other doctors and medical residents, and it sparked a new direction for him.
“i started to realize my story can help people. it can spread awareness, i can talk to providers about some of the stigmatizing experiences i had accessing health care. i found a purpose and a meaning in doing that, and then i started very quickly advocating for an overdose prevention site here in halifax, which we now have two in the province of nova scotia,” he says.
“i think people who have substance use disorders are always at risk of using.”
his message to the public and health-care providers is one about non-judgmental care and getting screened for hepatitis c. there’s safe, effective treatment, but, as he points out: “we can’t treat it if we don’t know who has it. that’s probably the main roadblock.”
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