In the new issue of Matters of Substance I have a story looking at a public health problem irrevocably tied to my generation. The generation either side of 50 that includes most of those living impaired lives and dying bad, early deaths because of Hepatitis C.
At least 50,000 New Zealanders, and perhaps many more, have the Hepatitis C virus. Many of them don't yet know they have it, which is why it's called the "silent epidemic". Some of them contracted it through medical misadventure and the signs are that an alarming proportion of new cases are sexually transmitted (home tattooing is another growing vector for the disease).
But the largest group were infected through injecting drug use, 20, 30 even 40 years ago. The consequent stigma is a significant impediment for them personally, and for public health in general.
I talked to many such people and was able to convey some of their experiences here in the same issue. The others, be assured that everything you told me was useful. Everyone's story in this – and they came from everyone from senior civil servants to musicians, counsellors and council workers – is important.
Some have chosen not to attempt a cure for a disease that will almost certainly shorten their lives. Why would anyone do that? From the story:
Cruelly, the ‘cure’ is, for many, worse than the chronic disease. The established treatment for hepatitis C, interferon, involves weekly injections supplemented with six daily tablets of ribavirin for 48 weeks. Interferon bolsters the body’s immune system in the hope that it can overcome the virus, but it also depletes the brain’s stock of serotonin, inducing symptoms of clinical depression in most patients.
“Let no-one say otherwise,” author and historian Redmer Yska has written of his own experience with interferon, “it is inhumane treatment.”
And even though results have improved considerably over the past 25 years, nearly half of those who undergo the ordeal of interferon will find, as Yska did, that it has not cleared their virus.
What if there was a way to make all that go away – to even eliminate hepatitis C itself? There is, but in New Zealand, the bargain has yet to be struck.
A new generation of anti-viral drugs has changed everything about dealing with the virus. The drugs have a 98% cure rate, require only a 12 week course and have no significant side effects. They're cheap and easy to administer. But they are not funded by Pharmac and a course of treatment costs $80,000 to $100,000 – more than $1000 a pill.
Clearly, most sufferers can't afford that, but about 1000 New Zealanders – including Redmer Yska,who successfully cleared the virus in 2014 with help of new generation anti-viral Sovalidi – have been able to access the treatment throughthe trials in Auckland, Christchurch, Hamilton, Tauranga, Wellington and Dunedin.
This is not Pharmac's fault as such, but the nature of Big Pharma. Hundreds of millions have been spent developing the anti-virals and acquiring companies with relevant IP, and the manufacturers want to recoup at the rate that indivdual country markets will bear. Pharmac is negotiating what that rate is. If you want an example of why a strong Pharmac is vital, that's it.
The irony, of course, is that even at the current rate, it's cheaper to cure someone than to conduct a liver transplant or provide care for liver cancer sufferers.
As Dr Ed Gane, Deputy Director and Hepatologist at the New Zealand Liver Transplant Unit at Auckland City Hospital and Clinical Professor of Medicine at the University of Auckland School of Medicine told me:
“Every death from hepatitis C is a preventable death. We have the means to not only cure individual patients but also to eliminate [the hepatitis C virus] from New Zealand. We just have to somehow get the government to pay for it.”
Dr Gane has done more than anyone to bring the trials to New Zealand. I spoke to a number of the people cured in those trials and they are deeply grateful for their new lives. But trials will continue for only another year or two. Unless we have at least one drug combination funded by then, we will see the vision of a country without Hepatitis C recede agan.