Hepatitis C cure costly, available only for advanced cases

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

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

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

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It's difficult for Masters to accept that there is a cure for her condition, but she may not be sick enoughto 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.ofFoster City, CA. twodrugs, marketed underthe brand names Sovaldi and Harvoni,are direct acting anti-virals.

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

Previous treatments had such serious side effects thatnot all patients with HCV were able to take theyear-long therapy,and only half of those who opted for the injectable treatment were successful.

Buta recent study published in the New England Journal of Medicine found the Sovaldi regimen curedup to 99 per centof hepatitis C patients.

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

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

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

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

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

She took one pill a day for 12 weeks, with no side effects.

Last June she got the newsthat she was cured. "My family and friends celebrated with me.I was overthe moon." NowMoehling'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 manyof 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 thevirus.

Drugs like Sovaldi and Harvoni aregame changerswith the potential to cure almost everyone whotakes them and even eradicate the disease in the long term, hepatology experts tell CBC News.

Butsuch 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 10Canadian provincial pharmacare programs that are underwriting the cost of thedrug have probablynegotiated a discount.

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

That is a tough message to deliver to patients who know they have a life-threatening illness and wantaccess to the cure before it gets worse, says Shawn Sharma, general manager of the Vancouver centrewhere Masters is being treated.

"You have to see the patients through the months andthey're just always actively questioning you, 'Why are you not wanting to treat me?'"Sharmasays."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 topay for treatment for everyone right now,"saysSherman, who worries the higher thanexpected demand could make the drugs less available. "The costs togovernment are much more thanexpected, so I worry about them restricting eligibility even further."

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

He says the concept of paying more up front fora quick cure, compared to treating a patient over many years is a paradigm shift inthinking. "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 indicatesonly mild fibrosis,not the moderate fibrosis Masters needs to meetthe criteria for a provincially funded cure.

The emotional weight Masters was carrying when shewalked into theclinicjust got a little heavier.

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