‘You don’t have to be ashamed:’ Blackfoot woman fights stigma around hepatitis | CBC News

A woman from southern Alberta is using her own experience with hepatitis C to support others who are at risk of infection.

Mercedes Russell from Kainai Nation, about 180 kilometres south of Calgary, said building rapport with people is a key part of prevention and treatment. 

Russell said she believes she was infected with hepatitis C about seven years ago through unsafe injection drug use — though she didn’t notice at the time. 

“I had no symptoms. I felt healthy,” she said. 

That’s a fairly common experience, according to Alexa Thompson, founder of the Alberta Hepatitis Elimination Network and a PhD student at the University of Alberta in laboratory medicine and pathology. 

“Most people infected with hepatitis do not experience symptoms until liver damage has already occurred which can sometimes take decades,” Thompson said.

Hepatitis B and C can lead to liver cancer and death if left untreated. There is no cure for hepatitis B, although treatment is available, so early vaccination is used to prevent infection. Hepatitis C is curable by treatment taken over a course of eight to 12 weeks. 

Russell only got her diagnosis after she entered treatment for addiction and said the stigma of hepatitis C was overwhelming. 

“I didn’t feel safe telling anybody,” she said, adding she felt shame, guilt and fear following her diagnosis. 

“I felt like I was going to be shunned.” 

Now cured and five years sober, Russell works as a peer counsellor for Indigenous Recovery Coaching in Lethbridge, Alta., where she believes education is a key part of prevention and treatment. 

Thompson said one in 150 Albertans are infected with hepatitis C, but only half know they have it. 

Although information about hepatitis is more available now, Russell said she knows people who are still unaware of the risks.

Even when she offers tests to people who use injectable drugs, they sometimes refuse, she said, “maybe because they’re scared to get tested or because they don’t want to get sober.”

It can also be difficult to try and detox while taking the antiviral medications, Russell said.

Many infected don’t know they have it

Recent warnings of potential exposure to hepatitis A at a fast food restaurant near Edmonton and hepatitis B at a Calgary piercing and tattoo parlour have raised fears over the spread of infection, but Thompson said those types of cases tend to be rare.

While anyone can get hepatitis, there are certain populations who face a higher rate of infection. 

Indigenous people have hepatitis C rates five times higher than the general population, according to Action Hepatitis Canada based on data gathered between 2016 and 2021. No data was available from the Northwest Territories or Nunavut.

The same report says people who are incarcerated are 24 times more likely to have hepatitis C than the general population. People who inject drugs, were born between 1945 and 1975, are newcomers to Canada or are gay or bisexual men who have sex with men are also disproportionately affected. 

Like Russell, many people infected with hepatitis don’t know they have it, and some struggle to get appropriate treatment. That’s why Alberta needs programs “tailored to populations structurally excluded from health care,” according to Simmone D’souza, a University of Calgary PhD candidate in microbiology and infectious diseases.

Educating vulnerable populations is a part of the solution, she said, but people in remote areas — where there aren’t specialized care providers or equipment — face extra barriers to care.

Kate Dunn, from Mississauga First Nation in northern Ontario, said feeling unsafe is another major problem. 

“Not only is there stigma but there is self-stigma,” said Dunn, who works with Indigenous communities to increase access to treatment and also produced a short documentary on hepatitis.

She said it’s important to remind people that anyone can be exposed to hepatitis and frame testing in a more positive way. 

Treatment and screening shouldn’t be scary. Instead they should be part of “a story of wellness,” she said. 

Advocates like Russell, who can speak from personal experience, encourage others by showing hope, she said. 

“It’s not the end of the world. I had it, too. You don’t have to be ashamed,” Russell said. 

To limit infections going forward, Thompson said Alberta should undertake hepatitis B vaccination for all babies (in Alberta, the vaccine is currently offered to children in Grade 6), encourage one-time testing for all adults, support culturally-appropriate resources provided by community members and support safe consumption sites for access to clean needles and syringes.

There is $7 million in provincial funding for prevention and care programs and access to risk reduction supplies, including needles, according to a statement from the government of Alberta.

The province said it offers funding for supervised drug consumption services in Calgary, Red Deer, Lethbridge, Edmonton and Grande Prairie, as well funding for bulk supplies and needle distribution.