James McGoram is so desperate for life-saving medical treatment, he has been forced to quit New Zealand and move to Australia.
The outgoing Rare Disorders New Zealand chairman told 1News that while he loves Aotearoa, “living here is quite literally killing me”.
McGoram was diagnosed with Fabry disease in 2010. It’s a rare genetic disease that can affect many parts of the body, including the kidneys, heart, brain, and skin.
While there’s no cure, treatments are available overseas to slow degeneration from the disease and improve patients’ quality of life.
“It has been a very tough decision for my family to uproot ourselves from our community, and to leave our home, our friends and our family behind, but as time goes by my situation is getting more precarious.
“I’ve fought hard for the rare community, and it frustrates me that my illness, and the lack of treatment, mean that I am compelled to leave to save my life.”
New Zealand’s Pharmaceutical Management Agency – also known as Pharmac – has been reviewing four treatment options for Fabry disease, including one that’s been under consideration since 2006.
Three of those medications are sitting on Pharmac’s options for investment list – Pharmac’s approved list of medicines waiting for funding.
“It is absolutely possible to do, and in many OECD countries, there are a number of treatments that are a standard of care. They’re not available in New Zealand.
“They’re available in Canada, the UK, Australia, and those treatments have been available since about 2004 in Australia.
“Twenty years later in New Zealand, we’re still waiting for those treatments to be funded.”
Pharmac manager of expert advisory Caroline De Luca said the agency acknowledged the significant unmet health needs of people living with Fabry disease in New Zealand.
“Pharmac operates within a fixed budget set by the Government, and there are always more treatments we would like to fund than we can afford. This means we must make difficult decisions about which medicines to fund and when,” De Luca said.
“We can’t say if or when a decision about funding these medicines will be made. It depends on things like the budget we have available, the success of negotiations with suppliers, and how we’ve prioritised these medicines against others.”
The Government boosted Pharmac’s medicines budget by $604 million last year — the largest increase in the agency’s history — enabling the funding of 66 new treatments, including 33 for cancer and 33 for other conditions.
Associate Health Minister David Seymour expressed “deep sorrow” over the circumstances faced by McGoram.
“We need to increase the funding more if we want to get to some of these additional rare disorder drugs,” Seymour said.
“We would have to roughly double the budget if we wanted to fund all of the medicines on the options for our investment list. I don’t think that’s a possibility at the moment, but we have increased the budget by about 60% already.”
Seymour added he is working to shift Pharmac’s approach — from strictly operating within a fixed budget to considering how funding more medicines could save money across the wider health system and improve lives.
“If a person can go to work and doesn’t have to be on a sickness benefit, that’s a saving.
“It would be better to fund a medicine for them than lose financially and lose in terms of their lifestyle, and in this case, lose a person over the ditch.”
James McGoram says while he loves NZ, “living here is quite literally killing me”. (Source: 1News)
McGoram will step down from Rare Disorders New Zealand in September and will be replaced by Ariane Tuapola.
He said there are many systemic inequities for people living with rare disorders in New Zealand.
“We are the people who don’t quite fit, and rather than the system making room for us, we are all too often thrown in the ‘too hard basket’,” McGoram said.
“It has taken years of advocacy, but the rare community has managed to get the Ministry of Health to develop New Zealand’s first Rare Disorders Strategy. I am immensely proud of that, but there is still work to be done to see it implemented.
“I hope that New Zealand can look forward to a future where people living with rare disorders feel equally valued and get the support they deserve. Nobody chooses to have a rare disorder, but everybody deserves the same level of care.”