After facing a tumultuous period in recent years, the Otago and Southland branch of the Hepatitis C Resource Centre Trust has shut its doors for good.
Since the government cut the centre’s already meagre funding (they only received $45,000 per year, to cover wages amongst all the other necessary costs), the centre has been struggling to survive.
The Trust was told in December that they would no longer receive Ministry of Health funding. Since then they have been trying to find other sources of funding, but to no avail. The centre is one of two Hepatitis C specific centres in New Zealand, the other of which is in Christchurch, and both are responsible for serving the entire South Island.
The centre’s co-ordinator Allison Beck commented that the Christchurch centre “will remain open for the foreseeable [future]” but “there’s just not enough money for both [centres] to stay open”.
Hepatitis C is a viral infectious disease with long-term health implications. It is spread through blood-blood contact, and it can be contracted as easily as sharing your toothbrush with someone, however, injecting or snorting drugs and tattooing at home remain the greatest risk factors. This has diluted the public’s view of the disease, tainting it with stigma and discrimination, making it harder for people to seek help, and seems to be the main reason why the government sees fit to cease funding the centre.
The Otago centre acts as an education and advocacy service that provides Hepatitis C patients with a range of services, helping anyone from Oamaru to Bluff. This includes providing generic copies of experimental medicines, as well as running educational programmes allowing groups within the community to be informed about the virus and where to go for testing or diagnosis.
According to Beck, other services do exist, such as Hepatitis NZ and the South Island Alliance, which receive lots in the way of governmental funding (we’re talking millions). The reason for this is that these groups offer a clinically led approach, instead of offering people assistance and advocacy, which was what the Resource Centre Trust does. Beck “doubts that the South Island Alliance has done anything useful” in terms of helping people with Hepatitis C.
Just this morning, Beck met with two patients who were extremely upset when they heard of the centre’s closure. One of them is “really sick, with extremely bad liver disease,” who needs someone to push him to seek help. With the centre no longer available, Beck hopes that those with Hepatitis C “will have enough mana and self-respect to stand up for themselves,” but with some people it seems that that is just not the case, and with this person in particular it looks like “he’ll probably just die of Hep C”. Several other non-governmental organisations (NGOs) have closed recently in Dunedin due to a lack of funding, despite providing a much needed service. “The National Government has the empathy of a rock,” Beck claims.
Hepatitis C is a treatable disease, however PHARMAC in New Zealand does not fund the top branded drugs or generic copies. Simply put, Beck said that the reason for this is because they “can’t afford it,” believing that “if they could [afford it] they would”. PHARMAC only fund treatment for Hepatitis C genotype 1, and only go on to fund further treatment for other genotypes if the person “already has one foot in the grave”. As it can take 20-25 years to develop the serious conditions, Hepatitis C sufferers only receive treatment when they are entering into the final stage of liver failure or disease after carrying the virus for at least 20 years, and potentially passing it on to other people. The only hope for them is to buy drugs from the overseas buyers club, something that had been facilitated by the Otago Resource Centre, and while the buyer’s club seems to be the best way to access these life-saving drugs, it is still too expensive and out of reach for many New Zealanders.
A law student last year bought drugs that all but cured her Hepatitis from the buyer’s club. The drugs cost her $3,800 but if she’d bought them in New Zealand they would have cost a whopping $84,000. Beck stated that the Australia model is “so much better than New Zealand”. Australia looks set to eliminate the disease entirely by 2026.
Currently 50,000 New Zealanders are living with Hepatitis C and, according to Beck, this number is just an extrapolation of the Aussie number, and in reality “they have no fucking clue how many people actually have it”. Because it is a virus with non-specific symptoms such as tiredness and lethargy - things many of us experience on a day-day basis - up to 30,000 may not even know they have it, and so only find out when they develop cirrhosis or liver disease. It has become New Zealand’s leading cause of liver transplants due to complications of liver cirrhosis, or liver cancer. It is predicted that the amount of people that will show symptoms of life threatening liver failure and liver cancer will triple in the next two decades.
It’s time for New Zealand to take action against Hepatitis C.