A Nanaimo, B.C., woman who contracted the hepatitis C virus through tainted blood has been denied a blockbuster new medication the province says is extremely expensive and would bankrupt the health budget.
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"I think about having hepatitis C every day," says Nikky Davies, who has liver damage and suffers from headaches, nausea and fatigue. "It's ruined my quality of life."
Davies, 54, was excited to hear about the new drug Harvoni, which eliminates the hepatitis C virus in approximately 95 per cent of all patients (not including those with liver failure or who have had a liver transplant) and made news when actor Pamela Anderson revealed she had used it and been cured of the virus.
The maker of the drug, Gilead Sciences, considers the infection "cured" once the virus is not detected in the blood three months after the 12-week treatment ends.
Harvoni's success has made it one of the fastest-selling drugs of all time and brought in billions of dollars in sales for Gilead. The pharmaceutical company says the 12-week regimen costs $67,000 in Canada.
Because she is too sick to work and is on disability assistance, Davies applied to B.C.'s Pharmacare program to cover the cost.
But the province said the overall cost to the health care system of providing, administering and monitoring the new drug is actually closer to $140,000 for each patient and denied the request.
The B.C. Ministry of Health confirmed to Go Public that there are more than 70,000 people in the province with the hepatitis C virus, but only patients with severe liver scarring, which compromises liver function and increases the risk of cancer and the need for a liver transplant, qualify for coverage.
'They made me sick, and now I don't qualify to be healthy.' - Nikky Davies, hepatitis C sufferer
"Due to the high prevalence of hepatitis C infection ... the cost of treating hepatitis C infection [with Harvoni] has the potential to significantly affect our health-system sustainability," ministry spokesman Eric Lun wrote.
But Davies said it was the system that got her infected in the first place.
"It was their mistake," says Davies, who got tainted blood during a transfusion at Victoria's Royal Jubilee Hospital in 1978. "They made me sick, and now I don't qualify to be healthy."
Davies and others who don't qualify for Harvoni can manage their condition with previously approved drug treatments, but the success rate in eliminating the hepatitis C virus is usually in the 30 per cent to 40 per cent range, and some patients suffer adverse side-effects.
- This week the fifth estate also investigates the high cost of pharmaceuticals in Canada. Watch 'Canada's Drug Problem' this Friday at 9
Diagnosis took years
The most common way to contract the hepatitis C virus is by sharing contaminated needles for intravenous drug use — something Davies said she has never done.
"I couldn't imagine having this kind of infection, because I wasn't doing anything that would contribute to that," Davies said. "So, I was really confused."
A routine blood test in her 30s revealed she had the potentially deadly virus — acquired from unscreened blood she received in hospital following a car accident when she was 16.
She was eventually part of a national class-action lawsuit, and received a settlement of $172,000 that has long since been spent.
Drug companies must 'curb profits'
University of British Columbia public policy professor and pharmaceutical drug researcher Steve Morgan says drug companies like Gilead are increasingly putting profit over accessibility.
"And it's not just Gilead," says Morgan. Companies are bringing new drugs to market "with prices that put their revenues no longer in the hundreds of millions of dollars range but now in the tens of billions of dollars range.
"They need to curb profits," says Morgan. "They should make a reasonable return — twice the cost of production, or three times."
Go Public requested an interview with Gilead Sciences Canada but was told no one was available.
In an email, company spokesperson Karen Chow did not directly address the high price of Harvoni but wrote, "It is important to note the significant value that these drugs bring to patients and the health care system as a whole."
Chow said Harvoni is "covered by all provincial public health plans; however, criteria can differ between jurisdictions."
The B.C. Ministry of Health told Go Public it has covered treatment for 3,700 patients since it became part of the drug formulary in March 2015.
Canada's drug plans a 'patchwork'
Other countries have negotiated with Gilead to drive down the price of Harvoni and make it accessible to tens of thousands of people.
Australia has used the clout of its national public drug plan to land a five-year, $1-billion agreement to treat every Australian hepatitis C patient with new drugs, including Harvoni.
That country — along with others like India and Egypt — is making a concerted effort to eradicate the communicable, blood-borne disease.
Canada has no national drug coverage program, only a non-binding system for provinces and territories to negotiate various deals. That, Morgan says, makes it difficult to negotiate better prices with pharmaceutical companies.
'Canada has the only universal health system in the developed world that doesn't have universal coverage of medicines.' - Steve Morgan, pharmaceutical policy researcher
"We have this fragmented, uncoordinated and incomplete patchwork of private and public drug plans, which means that there is very little purchasing power — even in our government plans," Morgan said.
"Canada has the only universal health system in the developed world that doesn't have universal coverage of medicines," he said. "It's a conspicuous shortcoming."
'Crisis of indifference'
Nikky Davies' doctor, John Farley, is a Vancouver epidemiologist and recognized hepatitis C expert who is also calling for a better national strategy.
"We need to bring the companies together, bring the stakeholders together, and say: 'You cannot hold the country hostage with a price that we cannot afford.'"
In the meantime, Farley wants the B.C. government to treat everyone who has the virus, not just those with severe liver scarring.
"Right now, treatment is based on the condition of the liver — not on the presence of the virus, and how a person is coping," said Farley.
"It's a crisis of indifference," he said. "There's a perception they are all [intravenous] drug users. We need to ask the Ministry of Health why they can write off a certain segment of the population.
"If it were breast cancer, colon cancer, or multiple sclerosis, where there was a cure for the mainstream population, I think that we would be getting off our laurels ... to come up with a strategy to eradicate that problem."
While Davies waits for access to the drugs she fears she may never receive, she takes herbal supplements to try to curb the nausea and fatigue.
"I just want to feel better," she said.
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