Mention hepatitis C and many people make a face, uncomfortable with talk of an infectious disease often associated with intravenous drug use and sexual activity. But the virus can be caught many ways, such as through poorly sterilized medical equipment.
And symptoms of hepatitis C can be minor or not present at all, so while a simple blood test may provide answers, it’s often not done because people aren’t aware they are at risk. As a result, the virus can go undetected and be unknowingly transmitted to others.
The World Health Organization (WHO) estimates 130 to 150 million people globally have a chronic hepatitis C infection and 350,000 to 500,000 people die each year from related liver diseases.
Many baby boomers could have the disease, according to Pernessa Seele, founder and CEO of the not-for-profit organization the Balm in Gilead in Richmond, Va.
“We have to advocate that people get tested for hepatitis C, especially those born between 1945 and 1965, because usually they’re not paying attention to (it) and if they do have symptoms of it, they think it’s something else, they don’t think it’s a blood transfusion they had in 1970 or they got something while they were a nurse in a hospital in the 70s… the virus really is able to stay in your body for a long, long time. So many people, one in three, they have the virus and they don’t have a clue that they have it.
“Many baby boomers got blood transfusions before the blood supply became safe in the 90s; many baby boomers are Vietnam vets… it’s a very prevalent virus. So bad needles you get in tattoos, barber shops, beauty parlours — this virus is very prevalent in our world.”
Adults born between 1945 and 1975 have the highest risk of having undiagnosed hepatitis C, yet a November 2014 survey of more than 1,000 Canadians by the Canadian Liver Foundation found more than 75 per cent of the respondents had not been tested for the deadly disease or didn’t know if they had.
Also at risk are immigrant populations from southern and eastern Europe, born between 1945 and 1970, who underwent mass vaccination campaigns under conditions that were less than sterile, said Morris Sherman, chairman of the Canadian Liver Foundation and liver specialist at Toronto General Hospital. Faulty medical procedures can also be to blame, he said, citing as examples Japan and Egypt when people were treated for a parasitic infection.
Following a similar recommendation by the Centers for Disease Control and Prevention in the United States, the Canadian Liver Foundation has called for a universal screening of people born between 1945 and 1975 because that age birth cohort includes the majority (80 per cent) of people with hepatitis C in Canada, said Sherman.
“The vast majority of people with hepatitis C have no symptoms at all, so the disease doesn’t call attention to itself until it’s very late in the day,” he said. “As long as you catch hepatitis C before you get to very heavy scarring and cirrhosis, the outlook is excellent. Even those who had sort of moderately heavy scarring in the liver that’s short of cirrhosis, if you can get rid of the virus, they’ll do very, very well.”
And people can reach a point where they’re no longer able to continue working, said Sherman.
“Even with full-blown cirrhosis, there’s a period of time which may be a number of years before liver failure develops and it’s only really once liver failure develops that patients become incapable of work.”
Fortunately, newer drugs on the market can cure hepatitis C relatively easily. The only catch? They’re expensive. And not many health plans, be they private or provincial, cover the cost. But it’s hoped that will change, as seen recently when Prince Edward Island announced in February it would launch a $5-million hepatitis C management strategy that includes the drug Holkira Pak by AbbVie.
The mainstay of therapy for hepatitis C has been a long-acting form of interferon injected once a week, said Sean Hosein, science and medicine editor at CATIE, a Canadian source for HIV and hepatitis C information.
“The problem with interferons is they can affect the brain and central nervous system so people would get side effects and some of these can be quite scary. They can range from being irritable, difficulty sleeping, intense fatigue and so on to more serious things like persistent nightmares that leave you exhausted when you wake up, depression, severe depression. It can interfere with your thyroid gland, which you need for energy, and affects your mood and so on, so interferon scared a lot of people away from therapy.”
But with new oral therapies, there are fewer side effects and people can take just one pill once or twice a day for 12 or 24 weeks, he said, depending on the extent of the liver injury.
“We’re hearing of an enormous increase in potency and success; you’re getting between 90 to 100 per cent success rates overall, particularly in people who have minimal liver injury from hepatitis.”
There’s some variation depending upon which particular subtype of virus a patient is infected with, but the bottom line is there’s now excellent treatment for most patients that will get rid of the virus completely, said Sherman.
“The drugs are extremely well-tolerated and the only problem with them is the cost.”
Prices can range from $800 to $1,000 per pill with “the politics of health care” involved, said Seele.
“It’s all insane… The cost is horrendous and that’s why we have to mobilize our communities to advocate… to the pharmaceutical companies to make these drugs available as well as to health-care providers to give the test and then make the drugs available, (and) our legislators to make the drug available and affordable.
“Employers can mandate that their employees get tested for hepatitis C and… if they are positive, provide the treatment as a part of their health-care plan.”
Now that there’s more competition on the market, with the three main companies supplying a drug being Gilead, AbbVie and Janssen, it’s likely one will be on formularies later this year, said Hosein.
“We are confident that one of these leading regimens will be on the list of regimens that are subsidized for use or are… on the lists of medications that are approved by insurance companies and by provincial and territorial agencies.”
Right now, the Canadian regions are negotiating prices with the drug companies, he said.
“I’m hopeful (pharmaceutical companies) will do the right thing and be good corporate citizens and put forward a price that’s fair to the system. I mean, economic growth in Canada is not very good right now and our provincial and territorial formularies are strapped for cash so we need something reasonable from the companies.”
A lot of private health-care plans don’t cover the host, said Hosein, and even if they do, they make patients “jump through all these hoops,” he said.
“I really wish the private plans would also negotiate more aggressively than they have in the past, because it’s to their advantage to get the drug listed because your patient who has a chronic illness can now be cured, in most cases, in 12 weeks, with all oral therapy. They will need a minimal amount of time off work, if any… and when they’re cured, then you don’t have to worry about all these other hospitalizations that come if you don’t treat hepatitis that end up costing everybody a lot of money.”
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