Desperate times call for desperate measures: A family’s plea to Pharmac
Did you know that myeloma is the second most diagnosed blood cancer in New Zealand? With about 400 new cases per year, it’s unfortunately currently incurable. It can, however, be kept below detectable levels for years by particular treatments and medicines.
The catch is, each medicinal combination eventually stops working, and the myeloma returns more aggressively. When that happens, a different treatment option is required, and it’s not easy to find or fund.
Newer medicines that greatly increase life expectancy after diagnosis are being released and developed, but not in New Zealand. No new myeloma drugs have been funded here since 2014, despite there being several medicines proven to fight myeloma.
These proven medicines, including daratumumab, pomalidomide, and carfilzomib, are on Pharmac’s “Options for Investment” list (commonly known as a wait list), meaning the government agency accepts that they have benefits and wants to fund them, but doesn’t have the budget.
Daratumumab, in particular, is a popular treatment for myeloma. It costs around $240,000 for the first year, and then roughly halves in subsequent years because fewer doses are required. Daratumumab is funded in 49 developed countries—but not in New Zealand.
Dr. Rodger Tiedemann, a haematologist at Auckland City Hospital, wrote to the Prime Minister in July last year, pleading for action. His letter was endorsed by the Haematology Society, Leukaemia & Blood Cancer NZ, and Myeloma NZ, and was co-signed by 33 haematologists (doctors specialising in blood-related disease), working across all major hospitals. Daratumumab is the most pressing need, Tiedemann wrote.
“People’s lives are being needlessly sacrificed, and the accompanying anguish is vast. By one careful estimate, delays in daratumumab funding in New Zealand by Pharmac since 2017 have cost 1,410 Kiwis an average of 3 years of life each,” the letter stated.
“Myeloma patients and their families live in dread of the next relapse. At the same time, for clinicians it is deeply distressing to have to tell cancer patients that there are effective treatments available in many other countries, but not in New Zealand.”
For more details about myeloma and what the lack of funding for treatment has meant for Kiwis, you can read this in-depth article from the NZ Herald.
The article follows the story of Simon, who has multiple myeloma, and his sister Lisa who has had to resort to collecting aluminium cans to help raise money for his treatment.
“It’s not a lot of money,” says Lisa. “But when Simon’s kids are older I have to look them in the eye and say, ‘I did everything I could.’”
We read so many stories just like Simon’s about Kiwis who are diagnosed with certain illnesses, and it’s incredibly frustrating that while there is treatment available, New Zealand just can’t afford to cover it.
It’s easy to write health insurance off as a waste of money, but when you need it most, it’s the one thing you can rely on in situations like these. But not all cover is created equal, so it’s important that you seek advice to understand what your health insurance policy covers.
There are some fantastic policies out there that cover treatments that aren’t funded by Pharmac, and those are the ones you want to have to protect you should the worst happen.
At Union Plus, we strive to help union members avoid situations like the above by ensuring they have the right cover when they need it most. Insurance can be complex, and that’s why our friendly advisers are here to translate the jargon and help you understand how it all works so you can protect you and your family.
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