New Zealand has 12 years to meet a World Health Organisation target to eradicate hepatitis C.
Standing in the way of achieving this is tracking down those with the disease, and publicly funding existing medication capable of curing it.
It’s estimated 50,000 New Zealanders could have the blood-borne virus with many unaware they have it.
Symptoms can take decades to appear and some, such as tiredness or aching joints, are easy to brush off as being due to age. Untreated, hepatitis C can slowly destroy the liver and eventually result in death.
The disease can now be eliminated from 95 percent of people through an eight to 12 week course of anti-viral drugs.
“At the moment it’s completely impossible to achieve the target in New Zealand because you don’t have the drugs to do the job. It’s that simple.”
In New Zealand, around 60 percent of those with hepatitis C have genotype one, which can be cured with publicly funded medication for around $49,500 for a course of treatment.
For the other five genotypes there is a medication which is effective against all genotypes, but it’s much more expensive costing around $73,089 per course of treatment. Pharmac only funds it for those with end-stage liver disease.
Pharmac director of operations Lisa Williams said more than 3000 people have been treated since the two anti-viral medications were funded.
She said a proposal to fund Maviret, a new anti-viral medication which is effective for all genotypes is currently being reviewed.
“If this proposal is approved, it would mean that all people with chronic hepatitis C (irrespective of disease severity or genotype) could access a funded treatment. The proposal, including feedback to consultation, is currently being reviewed by Pharmac and a decision will not be made in time to implement any changes before the end of 2018.”
An update on the proposal released mid-October by Pharmac says: “At this stage, we still do not have a firm timeframe for when a decision will be made or the date at which a listing could occur.”
For people waiting for the medication to be available, three options exist.
The first is to wait. They can choose no treatment until the new medication is funded by Pharmac, or wait until they reach end-stage liver disease where they will be eligible for currently funded medication.
“If you’ve got gangrene we would chop your leg off and that would cure you. That’s really what interferon and ribavirin is like.”
There is also a traditional treatment of interferon which strengthens the immune system, but can lead to depression. The success rate of the treatment which takes a year is approximately 50 percent.
The third option is to purchase medication for genotypes not covered by Pharmac from a buyers’ club.
In Australia Dr James Freeman set up the FixHepC buyers’ club. He said over 448 New Zealanders have received treatment through the service. Legally, New Zealanders are allowed to import three months’ supply of medicine for personal use.
Freeman’s service puts buyers with prescriptions from GPs in touch with suppliers of generic versions of medication. The average cost of the 12-week course, which for most people will rid them of the disease, is under $3000.
A link to the buyers’ club is included in treatment guidelines for hepatitis C on the Ministry of Health’s website, however, not all district health boards support seeking treatment from the club and some won’t inform patients the option exists. Prescribing doctors need to sign a form for the medicine to be allowed through NZ Customs which confirms they accept responsibility for prescribing an unapproved medicine.
Without access to the drugs which treat the other genotypes there’s little hope New Zealand will achieve the WHO target it and 193 other countries signed up to, according to Freeman.
“At the moment it’s completely impossible to achieve the target in New Zealand because you don’t have the drugs to do the job. It’s that simple. You do not have the tools to treat 40 percent of the population.”
He describes his service, which operates on a break-even basis, as a practical protest about drug pricing.
“I think it’s one of the greatest tragedies of modern times that drugs which cure one of the five major causes of infectious disease death (Hep C, HIV, Hep B, TB, Malaria) are not being deployed at mass scale. Their invention was a breakthrough that rivals the invention of penicillin – our first-ever cure for a virus.”
Freeman said the lack of tools could be putting general practitioners off suggesting patients get tested for hepatitis C.
“You’re asking a GP to open a can of worms.”
Patients who test positive for hepatitis C then need a test to establish the genotype they have.
“For 60 percent of them you’ve got the variety we can treat with medication. For the other 40 percent, it’s ‘Oh yeah, you’ve got hep C but unfortunately I’ve got nothing for you’.
“That’s really the fundamental problem in New Zealand in terms of getting enthusiasm.”
Prescribing the traditional treatment of weekly interferon injections and twice daily ribavirin tablets is “ethically pretty fraught” said Freeman, due to the side effects of interferon.
“Comparatively it’s like treatment for gangrene. If you’ve got gangrene we would chop your leg off and that would cure you. That’s really what interferon and ribavirin is like. It does roughly that much damage.”
The Royal New Zealand College of General Practitioners medical director Dr Richard Medlicott agreed treatment with interferon can be unpleasant for patients. For patients with genotypes not covered by funded treatment he said ongoing monitoring of their condition should be done, and GPs could inform them of the buyers’ club.
He’s personally helped one of his patients access treatment through the buyers’ club, which he said was successful, but it took time to navigate the website and work through what paperwork was required.
Medlicott hopes that in the future, medication for all genotypes will be publicly funded. He would also like to see funding to reduce the cost of visits to GPs for those with the virus.
“It’s really rewarding to help people get rid of this horrible disease but for some patients, the cost barriers of coming to see their GP are an issue. Given how much Pharmac are spending on the drug it would have been nice to put a little aside for the actual cost of seeing the GP or practice nurse.”
Once medication was available for all genotypes, he said one of the main barriers to eradicate the disease is detection.
“There are probably lots of people out there who feel perfectly well, who might have dabbled with intravenous drug use 20 years ago, and not know they have hepatitis C. Unless they had been tested for it specifically it mightn’t show up.”
He believes eradication is possible by 2030.
“We’ve still got 12 years. That’s quite a long time to find people with hepatitis C. I’m sure the cost of medication will decrease. I think we’ll get there.”
His message is to be tested if you have ever used intravenous drugs. Other risk factors include receiving tattoos or piercings with unsterilised equipment, receiving medical care in countries where hepatitis C is a problem, receiving blood transfusions prior to 1992, time spent in prison, or having a mother with the disease.
“If you think you’ve been at risk of hepatitis C, go see your doctor.”
