My story for Matters of Substance last year about the rollout of newly Pharmac-funded antiviral drugs that cure Hepatitis C contained both good and bad news. The good news lay in the fact of funding and in the compassionate, innovative work being done by Professor Ed Gane and his team in Auckland. The bad news was the weird intransigence of the Southern District Health Board.

To recap: the big problem with new direct-acting antivirals (DAAs) has been the pricing strategy of the drug companies, who are attempting to rapidly recoup development costs before new and even better drugs become available (an aim one company, Gilead, achieved almost immediately – everything since has been gravy). DAAs from Gilead cost $1000 a tablet – meaning that 12-week course of treatment came in north of $80,000. Even given the remarkable efficacy of these drugs, that was a big call on Pharmac resources.

Even after a budget had been made available, Pharmac was unable to negotiate an acceptable price with Gilead. So it did something appropriate but unusual: funded treatment not on the basis of severity of condition, but on the genotype of the Hepatitis C virus the patient had.

It would fund treatment with a DAA from another company, AbbVie. But AbbVie's drug combo only cures patients with genotypes 1 and 1a – about 55% of the infected population (which is thought to number about 50,000 in New Zealand). Those people could access treatment as of right. Patients with genotypes 2-6 are only eligible for funded treatment (with Gilead's product) at the point where they're basically in line for a liver transplant.

But there is another way. Genotype 2-6 patients can, via the Fix Hep C Buyer's Club, obtain "generic" versions of Gilead's drug combo for around $1500 and be treated with those. I use quotation marks around "generic" for a reason. The word suggests an inferior knock-off – but Fix Hep C's supply is made under licence from Gilead in India.

“These are the same medicines that Gilead is making in the States," Professor Gane told me. "They’re good medicines.”

And yet, the SDHB confirmed to me, not only was its policy was to refuse to prescribe to or monitor patients who wanted to take the Fix Hep C option, it would not even tell patients the option was available.

Professor Gane was, to put it mildly, surprised when I told him of the SDHB's stance. From the MoS story:

“I can’t understand that,” says Ed Gane of the Southern DHB’s stance. “We certainly prescribe plenty here. If you have genotypes other than genotype 1, you should at least have the option of paying for your own treatment, which includes generic. And I think the only ethical thing to do if you are testing for hep C is to have that discussion. “If we see someone diagnosed with genotype 3, we’ll say, ‘Sorry, but Viekira Pak will not work for you, we expect that Pharmac will have a treatment funded for you within the next one to two years. But in the interim, if you really want to be treated, you can import your own generics.’ And I would refer them to the Fix Hep C Buyers Club.”

I honestly thought that the story, with its affirmation from the country's leading liver specialist, would change things down south. It hasn't. The DHB remains unmoved. And now Hazel Heal, the Hep C advocate who first alerted me to the issue, has taken the step she didn't want to have to take: a formal complaint to the Health and Disability Commssioner.

"I don't want a fight, I just want them to change," Heal says.

"I'm now on my fourth person who has genotype 3 who has been given a blood test, been checked for genotype, found out they're genotype 3 – one of them at least is cirrhotic – and been told there's no treatment for them. I know you can't complain to the Health and Disability Commissioner about rudeness, but people shouldn't come away from their doctor crying and hurt.

"We just want them to be good clinicians and not necessarily good people or good communicators, I understand that. But they're standing in front of this patient, knowing that the generic option is there, with this level of research behind it, professional guidelines for goodness sake."

There is another treatment option: it's just really bad one. Patients are being directed to as much as 12 months' treatment interferon and ribavirin. Interferon is a really awful drug to take: it depletes serotonin to the extent that it creates the symptoms of clinical depression and patients with any history of mental health problems are warned against taking it. I've had it described to me as a form of torture. And its efficacy – in stark contrast to the DAAs – is not much better than 50%.

Patients in Auckland were advised for at least two years before Pharmac funding not to go on interferon and to hold tight for the new drugs. In Dunedin, people are still being told it's their only choice.

In her formal complaint, Heal notes she has been told that in 2017 this is "akin to recommending amputation rather than antibiotics for gangrene."

The New Zealand Hepatitis Foundation fully supports the Fix Hep C path and has a guide on its website to the process. In one of his responses to Heal, Dr Jason Hill, clinical leader at Dunedin Hospital's Department of Gastroenterology, wrote that if such a guide existed on the Hepatitis Foundation's website, "I can't find it". (From the home page it took me literally 10 seconds and two clicks.)

The Fix Hep C process is also endorsed in the formal treatment guidelines published by the the New Zealand Society of Gastroenterologists.

The SDHB's objections seem to centre on a reading of MedSafe's boilerplate advice about personal importation that other specialists simply do not share. It's hard to know what's going on here. Is there an element of professional rivalry? (Professor Gane had a hand in both the guidelines noted above.) Is it an excess of risk aversion? Is there research money somehow involved? Or is it just the thing that has always complicated and frustrated attempts to deal with Hepatitis C as a major public health problem – stigma?

Most Hep C patients were infected through injecting drug use. And many of them have learned from experience that going to doctors and hospitals can be a humiliating experience in it itself.

"It's like we're not real to them," says Heal."I honestly think stigma is the basis of it. There is that within the profession, within medicine, that says we need to suffer a bit with interferon. That it's not something they need to concern themselves with. A treatment is a treatment and we should feel lucky to get it because they see really sick patients who haven't inflicted it on themselves. It's like racism where people don't realise they're racist. That stigma amongst clinicians against people with Hep C.

"My own doctor just about fell off his chair when he saw how much my cirrhosis had gone [after treatment with generics from Fix Hep C]. It was like the highlight of his career. And yet he's looking people in the eye now and telling them they've got no option. I just don't understand."

The SDHB's intransigence has, surprisingly, not even been on the radar of the Southern Alliance, the clinician group tasked with guiding the DAA rollout. Or perhaps it's not so surprising: the Pharmac-funded side of this project has plenty of its own challenges – notably in educating GPs and reaching into prisons – and I'll look at those in future posts.

But the SDHB clinicians aren't suburban GPs. They should be aware of their own professional guidelines. They shouldn't be risibly claiming not to be able to find those guidelines on the internet. This is about people's lives, for goodness sake.

Last week, Professor Gane was honored with the Innovators Award at the New Zealander of the Year Awards, for his work on curing Hep C, which goes all the way back to his original research in 1992, which demonstrated for the first time that the virus was the most common cause of liver failure.

He told NZ Doctor that he hoped any publicity around his award could be harnessed to challenge the continuing stigma around the disease. It would appear that there is plenty of work to be done yet on that score.

–––

If you'd like to know more about Hepatitis C, you can visit the Hepatitis Foundation website and read the Matters of Substance feature I wrote in 2015 about the story of the virus, and its human impact, in New Zealand.