BillyBob McPherson lived on Ottawa’s streets as a young teenager before “running away with the carnival.” The 55-year-old doesn’t know exactly when during his colourful life he contracted hepatitis C – he thinks it might have been in Texas in the 1980s where he had surgery and blood transfusions while working as a carny.
But without treatment, he believes, the disease would have ended his life.
Today, he is disease free, a living testament to the wonders of new drugs developed to cure the liver disease with few or no side effects. But he is also an example of the painful realities of the new treatments.
McPherson was cured because he took part in a clinical trial of the drug holkira pak, which was approved by Health Canada late last month. For 12 weeks he took nine pills a day, suffered no side-effects, and almost immediately began to feel better, he said.
“These guys saved my life,” he says of the pharmaceutical company AbbVie, which developed the treatment and has held clinical trials in Ottawa, throughout Canada, and around the world.
But without the benefit of the clinical trial, McPherson, who lives on a disability pension, would not have been able to afford the cure.
It is a reality Dr. Curtis Cooper, director of The Ottawa Hospital and Regional Hepatitis Program, who oversaw the AbbVie trials, deals with daily.
Holkira pak, which had a 97-per-cent cure rate in clinical trials, including for patients with cirrhosis, is not yet on the market, and its price is not public. But other new drug regimes that treat and cure hepatitis C (genotype 1) without using interferon (which causes difficult side effects and is less effective), are priced well out of the range of most patients.
For example, Gilead’s sofosbuvir drug, known as Sovaldi, costs $55,000 in Canada for a 12-week course of treatment, according to the company. Treatment costs to patients can be considerably higher, though, since often costly drugs are combined. One local patient with genotype 2 hepatitis C said he was told this week a combination of drugs, including sofosbuvir, taken over 16 weeks would cost $100,000.
The man is waiting to hear whether his insurance, or the drug company would cover part or all of the cost. If not, he said, he will pay for it himself.
“It is literally a life-and-death situation for me. At the end of the day, it is more important to have the drug than to be worrying about the price.”
Health Canada has approved three new drugs, sofosbuvir, simeprevir and harvoni since late 2013. Holkira pak was approved by Health Canada on Dec. 22, about the same time it received approval from the U.S. Federal Drug Administration.
Dr. Jordan Feld, a hepatologist at the Francis Family Liver Clinic at Toronto Western Hospital, called the development of new therapies for hepatitis C “history in the making.
“Hepatitis C is a devastating disease that causes more years of life lost than any infectious disease in the country. With the introduction of life-saving therapies that offer high cure rates, we can finally prevent complications of the disease and it actually raises the possibility that we even eliminate the disease from Canada altogether.”
But neither the Ontario drug plan nor many private plans cover the cost of the drugs, although simeprevir is covered under the province’s Exceptional Access Program, for some patients who meet defined criteria. AbbVie and other companies also provide drugs to some patients on a compassionate basis.
Still, Cooper said he sees patients almost on a daily basis who can’t afford the cure.
“It is very hard to explain to a patient that we have these great new treatment but I can’t put you on them because they are not paid for.”
Of 5,000 patients at the Ottawa Hospital clinic with hepatitis C, 100 of them are taking one of the new treatments. Some of those patients are covered by insurance that pays, or partly pays, for the treatment, said Cooper. Others receive treatment at no cost because of their circumstances and condition. Some patients, like McPherson, have benefitted from clinical trials of the drugs. A few have paid for the drugs out of their pockets.
Government funding for the drugs might come too late to save the lives of some patients who could be saved now, said Cooper.
“If you have a patient who already has cirrhosis, it is really tough for them to understand they could die in the next year without getting this therapy that is Health Canada approved.”
Cooper believes Ontario, which he says has been reviewing some of the drugs for months, should immediately begin paying for treatment of patients with advanced liver disease.
Hepatitis C patients have high rates of poverty, substance abuse and mental health issues – a demographic with little power. The virus, which affects 170 million people around the world, can scar the liver and lead to cirrhosis and liver cancer. Deaths are on the rise and baby boomers are considered most at risk. According to one report, two-thirds of the people with the virus are in that age group, and a large proportion is unaware of it.
Cooper noted there are limited health budgets to pay for drugs, but he said the cost of paying health providers to care for hepatitis C patients year after year is also high, as is the cost of a liver transplant – between $200,00 or $300,000 – for those lucky enough to get one.
McPherson knows he was lucky to get into the AbbVie drug trial. He was diagnosed with hepatitis C in the past few years but believes he had it for some time. His illness was at Stage 3, but McPherson says he was well on his way to Stage 4 and needing a liver transplant.
Before being diagnosed, McPherson, who had long since quit drinking, said he felt like he had a “permanent hangover. I knew something was wrong.”
That feeling went away soon after he began taking the drug regime in nine pills a day. Within two weeks of starting the trial, he said, his viral load was at zero.
“It is really remarkable.”