‘Unbearable’: Patients with rare disorders wait and hope for Pharmac to fund treatments after major $604m boost
Tuesday, 25 June 2024
People with rare disorders are facing a desperate wait to find out if their treatments will be funded through the National-led government’s landmark $604 million funding boost for medicines and cancer treatments.
Health Minister Dr Shane Reti on Monday outlined plans to massively boost medicine spending by $150 million a year for four years. The money will pay for 54 new medicines, 26 of which are cancer treatments. A “range of other conditions” would be covered in the package.
Chris Higgins, chief executive of Rare Disorders NZ, was among those welcoming the funding boost, but said it was an agonising wait for many he advocates for and whose medicines are on Pharmac’s priority for investment list.
“Patients waiting for medicines on the OFI (option for investment) list have long been told the only thing standing in the way of accessing their medicine is funding,” he said.
“They have been patiently waiting while becoming increasingly unwell and disabled and facing the prospect of avoidable early death. It is unbearable for them to potentially be so close to access yet be told to continue to wait with the possibility the result will not be in their favour.”
The breakdown
The government’s Monday announcement went further than National’s election promise to fund 13 specific life-prolonging cancer treatments. But it came 23 days after the May 30 Budget - what was when those with cancer and clinicians were expecting to find out which treatments could be funded.
Reti apologised for the “vacuum” left after the announcement - which caused angst and concern for those who were waiting to find out if the government would follow through on its election promise.
But he and Luxon emphasised people would get the same or better versions of medicines which National campaigned on. As many as 175,000 people would benefit from them in the first year, they said. This was well over the 1000 patients expected to benefit from its initial promise.
Advocates and groups including the Cancer Society and Breast Cancer Foundation have welcomed the extra funding, which they say goes towards addressing the gaping medicines gap between New Zealand and comparable countries.
New Zealanders have the worst access to funded modern medicines out of OECD nations studied in a 2019 International Comparisons of Modern Medicines report. As well as those with cancer, New Zealanders with Crohn’s disease, cystic fibrosis, and diabetes cannot get the latest drugs through Crown agency Pharmac.
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But Cancer Society chief executive Rachael Hart said it was “essential” that there were enough health professionals to administer the medicines, or else the funding boost was a “hollow victory”.
The union representing nurses has for years described how chronic workforce shortages have put nursing staff under unbearable pressure, and in May highlighted how cancer wards are some of the most understaffed in the country.
But Reti has promised the government will spend $38 million on the ‘infrastructure’ around the funding, which includes salaries for extra nurses and doctors.
“The workforce is challenged. It's been challenged for some period of time, but we have confidence we can deliver,” he said.
However, he would not stake his job on it.
In total, Pharmac estimates the proposal will fund:
26 cancer treatments covering all cancer types originally listed plus other types not previously included (such as blood cancers);
up to seven of the original 13 cancer treatments proposed pre-election, with alternatives for the other treatments that are as or more effective than those originally listed;
28 other medicines that also add substantially to New Zealanders’ health and life outcomes, across a wide range of conditions which could include infections, respiratory conditions, osteoporosis, sexual health, dermatology, inflammatory conditions, and mental health.
Pharmac’s estimates change with new information on prices, medicines and effectiveness. Their current estimate is that around 175,000 people will benefit in the first 12 months. Over time, treatments will include 13 cancer treatments, or alternatives as good or better than, from National’s 2023 manifesto.
The named cancer treatments included in this package are:
o Atezolizumab with bevacizumab for liver cancer
o Axitinib for kidney cancer – second-line therapy
o Cetuximab or panitumumab for bowel cancer – first-line therapy
o Nivolumab for kidney cancer – second-line therapy
o Osimertinib for lung cancer – first-line therapy
o Osimertinib for lung cancer – second-line therapy
o Pembrolizumab for bladder cancer
• The cancer medicines will include treatments for:
o Lung cancer
o Liver cancer
o Bowel cancer
o Kidney cancer
o Bladder cancer
o Head and neck cancer
o Melanoma
• A number of other treatments for cancers including blood cancers and other tumours, meaning an estimated 26 additional cancer treatments in all.