Associate Finance Minister David Seymour with inset of Samantha Lenik. Composite photo / NZME
Associate Finance Minister David Seymour with inset of Samantha Lenik. Composite photo / NZME
Opinion by Samantha Lenik
OPINION
Dear Hon David Seymour, Associate Minister for Health (Pharmac),
I write this letter with the hope that as the first minister designated specifically to Pharmac you will be the first minister to concede the deep failings of successive governments when it comes to medicine funding and medicine access, and instigate a new more equitable pathway through the smoke and mirrors of Pharmac.
I was diagnosed with a rare muscle-wasting disorder 10 years ago (Pompe disease). Being given any form of progressive, declining disease diagnosis is shocking, but in New Zealand, it is all the more terrifying when you are told there is a medicine that can slow down the progression and give you more time with your loved ones, but you can’t access it because we don’t fund it!
March is Rare Disorders Month, and it has been almost two years since the Government committed to delivering a national rare disorders strategy. While we wait, an estimated 300,000 New Zealanders like myself have borne the brunt of a lack of medicine access, a lack of co-ordinated data, a lack of co-ordinated support, diagnosis delays, and a lack of awareness of our conditions.
David Seymour, Associate Minister for Health (Pharmac). Photo / Dean Purcell
Samantha Lenik and family.
I hope you, or someone you love, never has to experience the terror of having to decide whether to re-mortgage their home to pay for treatment, move overseas to access medicine, or worst of all, have to live with a death sentence because you don’t have the money to buy your drugs, or relocate your family.
I was one of the very lucky ones when after two years of feeling my decline and worrying I wouldn’t see my kids finish college, I was given access to a clinical trial in Australia. This has seen me improve in muscle strength, then stabilise, and enable me to live a full life for the past seven years. A life where my kids are now teenagers, and drive me crazy, but I am still here for them and my husband, and I have returned to work full-time.
Travelling every two weeks to Australia, for two and a half years, and then moving to Australia for three years to make access easier was hard work, but I would do it again in a heartbeat. I was only able to access my medicine with the help of my family and friends, who stepped in to look after my children when I was away and my husband was deployed overseas with Defence.
I now receive treatment in New Zealand through the trial, but it shouldn’t be the case that the only way Kiwis can access life-saving medicines is through clinical trials offshore, self-funding, moving overseas, or compassionate access programmes.
The Pharmac model, which was established 25 years ago, is broken. The model is great at funding general medicines for the wider population, but it is extremely slow-moving to fund medicines for anything outside of the more general. Even the Pharmac review conducted in 2021 did little to instigate any meaningful change.
I know that every time this discussion comes up, there is a cry of, “Well we can’t fund everything”. The thing is, in comparison to other OECD countries, we are ranked 20th out of 20 for access to modern medicines (Medicines Australia, 2018), and we publicly funded only 34 of the 441 modern medicines launched across the OECD between 2011 and 2020 (IQVIA, 2021). There are 131 modern medicines available through public funding for Australian patients that are not available to New Zealand patients through our public health system (IQVIA, 2023).
This current funding model prioritises the upfront savings on the cost of medicines rather than the downstream impacts. Photo / Whakaata Māori.
This current funding model prioritises the upfront savings on the cost of medicines rather than the downstream impacts on, and cost to patients, whānau, the wider health system and the economy. For example, the impact on my whānau when I had to travel overseas to access the clinical trial, the disruption for my children, the economic loss in me not being able to work, versus, if we invested in the funding of my medicine, I could have continued working, and I would not have seen those first years of decline before I got onto the trial.
I read the other day that Pharmac had decided to retain Rule 8.1b, meaning that all medicines currently being funded for child cancer patients will continue to be funded. Amazing, but is it? What sort of country are we, where there was even a discussion about removing medicine access for child cancer patients?
I hope that as the Associate Minister for Health, and Pharmac, you will be the first minister who looks at the working model and initiates real change. If we don’t change now when we are already so far behind the rest of the OECD, then we might be looking to revoke rule 8.1b and that is a day I hope I never see.
