Health

Hepatitis C cure costly, available only for advanced cases

The cost of a revolutionary medical treatment for hepatitis C is so high, only those with moderate liver disease will have the medicine provided under provincial pharmacare programs.

New medication cures 99% of patients, medical journal finds

Veronica Masters, who is being treated at the Vancouver Infectious Diseases Centre, has learned that her hepatitis C is not far enough advanced to qualify her to receive new breakthrough drugs. (Chris Corday/CBC)

At the Vancouver Infectious Diseases Centre, Veronica Masters is getting a FibroScan test to measure scarring caused by the hepatitis C virus (HCV) in her liver.

Most patients hope for a good result from their medical tests, but Masters is hoping her condition has worsened. "I need Stage 2 to get the drugs," she says. 

The cost of a revolutionary medical treatment for hepatitis C is so high that only those with moderate liver disease will have the medicine provided under provincial pharmacare programs.

It's difficult for Masters to accept that there is a cure for her condition, but she may not be sick enough to get it. "I look healthy, but my body doesn't feel as healthy as it should."

She begins to weep. "Sorry, my mental health really gets affected.  It's just really, really stressful."

The cure for HCV comes from Gilead Sciences Inc. of Foster City, CA. two drugs, marketed under the brand names Sovaldi and Harvoni, are direct acting anti-virals.
Shawn Sharma, general manager of the Vancouver Infectious Diseases Centre, examines Veronica Masters, who has hepatitis C. (Chris Corday/CBC)

Dr. Mark Swain, head of the University of Calgary's Gastroenterology and Hepatology Division, says, "I would actually use the word transformational."

Previous treatments had such serious side effects that not all patients with HCV were able to take the year-long therapy, and only half of those who opted for the injectable treatment were successful. 

But a recent study published in the New England Journal of Medicine found the Sovaldi regimen cured up to 99 per cent of hepatitis C patients.

"I can cure now. This is why I became a doctor," Swain says.

"It's just a wonderful thing to be in hepatology and be a liver doctor and be able to cure everyone that I put on this type of therapy." 

Lyn Moehling is living proof. The Calgary school teacher was symptom-free and had no idea she had been living with hepatitis C for four decades. She found out when she donated blood, and within a few years she learned her liver was failing.

"My liver scan was at 16 and I believe a total fail is at 20. So I was really up there." 

Moehling began mentally preparing for the worst, a liver transplant or perhaps even death. Then Swain put her in a clinical trial for Sovaldi. 

She took one pill a day for 12 weeks, with no side effects.
Sovaldi, manufactured by Gilead Sciences, cures hepatitis C. (Gilead Sciences)

Last June she got the news that she was cured. "My family and friends celebrated with me. I was over the moon." Now Moehling's liver function has returned to nearly normal. "It's a miracle, it's a real miracle."  

In Canada, it's estimated between 250,000 and 400,000 people have the hepatitis C virus, a great many of them undiagnosed because many people have no symptoms until their liver is failing.

The Canadian Liver Foundation recommends anyone born between 1945 and 1975 be tested for the virus.  

Drugs like Sovaldi and Harvoni are game changers with the potential to cure almost everyone who takes them and even eradicate the disease in the long term, hepatology experts tell CBC News.

But such promise comes with a hefty price tag.  

The retail price for an eight- to 24-week regimen of the anti-virals ranges from $55,000 to $80,000 Cdn.

Health Canada and 10 Canadian provincial pharmacare programs that are underwriting the cost of the drug have probably negotiated a discount.

But, whatever the price, it's steep enough that only those patients whose liver disease has progressed to Stage 2 will qualify for publicly funded medication.

That is a tough message to deliver to patients who know they have a life-threatening illness and want access to the cure before it gets worse, says Shawn Sharma, general manager of the Vancouver centre where Masters is being treated.
Shawn Sharma and Veronica Masters discuss her case. (Chris Corday/CBC)

"You have to see the patients through the months and they're just always actively questioning you, 'Why are you not wanting to treat me?'" Sharma says. "That in and of itself is difficult to kind of go home with every day as a health-care professional." 

It's a difficult but necessary message, according to Dr. Morris Sherman, chair of the Canadian Liver Foundation.

"There has to be a system to amortize the cost of hepatitis C over time, because it's just not possible to pay for treatment for everyone right now," says Sherman, who worries the higher than expected demand could make the drugs less available. "The costs to government are much more than expected, so I worry about them restricting eligibility even further." 

So far, that has not happened. But there's little doubt there is an increased focus on how to get more widespread access to those drugs that can cure hepatitis C. Swain says, "I would say that is going to be the biggest challenge going forward."

He says the concept of paying more up front for a quick cure, compared to treating a patient over many years is a paradigm shift in thinking. "I think many of the payers are having a hard time grappling with that because it's a new thing; it's a new phenomenon, really." 

At the Vancouver clinic, Masters braces herself for the results of her scan.

Sharma delivers some pretty good health news: "You're at a Stage Zero now, going into Stage 1."

Stage 1 indicates only mild fibrosis, not the moderate fibrosis Masters needs to meet the criteria for a provincially funded cure.

The emotional weight Masters was carrying when she walked into the clinic just got a little heavier.

"What do I think?" she asks. "I think it sucks. I think it's tragic."

ABOUT THE AUTHOR

Carolyn Dunn

National reporter

Carolyn Dunn is a longtime national reporter for CBC News. Her Canadian postings and assignments have taken her from St. John's to Calgary. She has reported extensively abroad including East, West and North Africa and has done several tours in Afghanistan. Have a story tip? Email carolyn.dunn@cbc.ca.