Hep C sufferers endangering health to get treatment
B.C., Ont. won't cover antiviral drugs without liver damage, so patients binge drink
Last Updated: Wednesday, March 3, 2010 | 12:34 PM PT
By Kathy Tomlinson, CBC News
Health-care workers who treat hepatitis C are raising the alarm about patients who are binge drinking and taking dangerous herbal concoctions to try to inflame their own livers in a desperate bid to get provincial governments to pay for their medication.
"The binge drinking is huge," said Fran Falconer, an award-winning hepatitis C support nurse on Vancouver Island. "For the liver, drinking [alcohol] is like putting grease on a flame. It's like fertilizer to the hepatitis C virus."
Hepatitis C is a chronic liver disease caused by the hepatitis C virus, which is spread through contact with infected blood. It can lead to cirrhosis of the liver and eventually, liver cancer and death. There is no vaccine against the virus, but the disease can be treated with a combination of the antiviral medications interferon and ribavirin.
The provincial drug plans in B.C. and Ontario only pay for antiviral treatments if hepatitis C patients submit documented evidence of significant liver damage. By contrast, Alberta pays for the treatment if a doctor prescribes it, regardless of the state of the patient's liver.
'Willing to do anything': hep C nurse
"I see patients that are willing to do anything to get rid of the virus," said Falconer. "Patients shouldn't have to stoop to those levels in order to access care and treatment."Fran Falconer, a nurse who works with hepatitis C patients, says they will do anything to get the treatment they need. (CBC)
According to the B.C. Centre for Disease Control, approximately 50,000 people in B.C. are infected with the hepatitis C virus, more than in any other province.
"I was making myself sicker to get better," said B.C. resident Richard Levesque, who suffers from hepatitis C. "I drank heavy stuff. I drank beer. I just drank and drank and drank, for three days, because I knew I was going in for a liver test.
'I just drank and drank and drank, for three days, because I knew I was going in for a liver test.' — Richard Levesque, hep C patient
"I had been sober for six months. My liver was down to normal. So, to get it inflamed again, you have to aggravate it."
Levesque said he harmed his health, but he still wasn't able to raise his enzyme levels high enough to qualify for provincial funding.
"Some of these practices that are being used [by patients] are significantly detrimental to their health and, in some cases, may be fatal," said Dr. Brian Conway, an infectious disease specialist who runs a hepatitis C clinic in downtown Vancouver.
Conway said patients consult him daily about ingesting substances to try to raise their enzyme levels, and he strongly discourages them from doing anything harmful.
One-quarter will not qualify
Among Conway's patients, 200 are currently receiving treatment, some through drug trials funded by pharmaceutical companies. Another 250 are waiting for treatment, and Conway estimates 50 to 75 of those will have their treatment rejected by the provincial drug plan.
"The rules need to change so we don't have to argue for coverage, case by case," he added.
B.C.'s drug regulator, Pharmacare, will only pay for antiviral medications if a government-appointed committee approves a patient's application.
According to the Ministry of Health, the criteria for approval includes documented evidence of elevated liver enzymes, biopsy results or other medical evidence that shows liver damage. Patients must also be drug- and alcohol-free, and they can't have had previous treatments that failed."
This approval process is unique to hepatitis, said Dr. Morris Sherman, chairman of the Canadian Liver Foundation.
"To my knowledge, hepatitis B and hepatitis C are the only infectious diseases where the provinces attempt to tell the physicians how to manage the disease," Sherman said. "There is no restriction on HIV drugs, or TB drugs, but for hepatitis B and C, the approach is different.
"The indication for treatment of hepatitis C is being infected with hepatitis C [virus], not whether liver disease is present or not."
The cost of the antiviral drug treatment for hepatitis C ranges from $5,628 to $21,360, according to the B.C. Health Ministry, although the Ministry did not cite cost as a factor in its determination of whether to pay for a patient's hepatitis drug.
B.C. Health Minister Kevin Falcon said that because the treatment has significant side-effects, the province relies on the approval committee to determine who should get treatment, instead of leaving it up to the patient's physician.
"We do think it's important enough that these specialists who are specialized in making these kinds of drug decisions have the ability to make these decisions based on evidence — not just on one individual doctor wanting to make a decision," Falcon said.
The Health Ministry suggested more than 80 per cent of applications for hepatitis C drug treatment are approved, but several doctors said they don't even bother submitting applications for patients who don't meet the criteria.Approximately 20 per cent of patients who ask for treatment are rejected; many others don't apply because they don't meet the criteria. (CBC)
Patients who are left untreated and develop end-stage liver disease end up costing the health care system much more than the treatment itself —including a minimum $55,000 for a liver transplant.
"I had a patient who was using an oil emulsion with a herb [to inflame the liver], and he brought his liver function testing from a normal range into hepatatoxicity," said Falconer.
"That means his liver was toxic. And if you have a toxic liver, you can go into liver failure very quickly. He was poisoning himself."
Levesque said his three-day drinking binge set his progress in battling his disease back significantly.
"I phoned my father and said, 'Guess what I have to do,' and my father said, 'Son, no don't.' I said, 'Dad, I have no choice. I have to bring this [liver] count up, or they won't help me.'
"A lot of people turn back to bad things they used to do, and that is certainly not good for society, and it's not good for anybody."
Rules morally wrong: liver expert
Hepatitis C sufferers in Ontario, where the rules for drug coverage are similar to those in B.C., are also trying to inflame their livers in order to get the province to pay for antiviral drugs, said Sherman.Infectious disease specialist Dr. Brian Conway says the provincial rules need to be updated. (CBC)
"This is so short-sighted that it boggles the mind," he said. "All these patients will eventually have to be treated, so there is no saving of money.
"To my mind, it is morally wrong to delay treatment for any other reason other than presence of contraindications or [a] patient's wishes. Yet, the province [of Ontario] has taken this decision unto itself without any compunction."
Conway said antiviral medications are much more effective than they used to be and should be covered for any patient who has the virus if their doctor believes they are ready for treatment.
"The regulators haven't become completely aware of the most current scientific guidelines," said Conway.
Minister says province unaware of problem
Falcon said the experts on B.C.'s drug approval committee have never heard of patients trying to harm themselves to get coverage.
"Perhaps if the doctors have real evidence of patients actually doing this, it would be important to let the Ministry know so we can get a handle on it," the health minister said. "Maybe there is something out there that we need to understand more."
When asked what he thought of patients like Levesque binge drinking to try to get treatment, Falcon abruptly ended his interview with CBC News.B.C. Health Minister Kevin Falcon ended an interview with CBC News when asked what he thought about people binge drinking to try to get medicine. (CBC)
"Thank you," he said, before turning and walking out of the room.
Meanwhile, Levesque hopes the publicizing of his case and others will shame the government into changing its coverage policy.
"It should be embarrassing for them," said Levesque. "We're here to get healthy. When a person makes a conscious decision to change his life and be sober, you don't kick him when he's got out of that hole. He is extending his hand. It's time to help."
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