The below article appeared on sunlive – The Bay’s News on Sunday entitled ‘Medicines crisis declared in NZ‘.
A campaign is underway to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.
MyLifeMatters, a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions have this week launched the campaign.
“Kiwis are one diagnosis away from having to move to Australia to access medicines that are publicly funded elsewhere in the OECD. We are in a crisis and our politicians need to act,” says Patient Voice Aotearoa chair Malcolm Mulholland.
“Medicines are a core part of the backbone of healthcare, enabling patients to lead healthy and productive lives, however New Zealand remains at the bottom of the OECD without access to many medicines that are already part of standard international treatment regimes.”
Malcolm says New Zealanders’ ability to access new and breakthrough medicines lags well behind other comparable OECD countries, with New Zealand dead last, ranking 32nd in a list of 32 OECD countries for public funding of medicines.
The recent Medicines Landscape 2022/23 report is a stark reminder of just how big this issue is.
In April 2023, there were 109 applications waiting for funding on Pharmac’s Options for Investment List, with many medicines languishing for an average wait time of 7.7 years and longer.
“Compounding these concerns is the investment hole in the health budget that demonstrates the Government’s lack of commitment to reducing time to access new and breakthrough medicines as early as possible,” says Malcolm.
“The additional funding provided to Pharmac by the Government to fund new medicines or widen access was only provided for in the 2022/23 and 2023/24 years.
“To maintain access the same list of funded medicines, an additional $181 million dollars is needed, and this does not include funding for any new medicines.”
Malcolm says this could mean no new medicines will be funded until there is a commitment from Government to do so.
“The Treasury has already warned the Government twice in the Budget Economic and Fiscal Update (BEFU) about the funding which is missing from the health budget from 2024 onwards.”
The issues MyLifeMatters are highlighting they say need to be addressed are:
- Timely access to new and breakthrough medicines
- Patient-focused wellbeing benefits to be included in decision-making processes
“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.
He says this is to improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system.
“Pharmac plays a pivotal role in the management of medicines access, with decisions primarily driven by costs and little consideration given to societal factors.”
He says there also needs to be an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance.
“Many Kiwis are struggling to privately fund the medications they need, forced to leave New Zealand, or go without the treatment they desperately need.
“This burden is particularly hard on vulnerable communities, leading to adverse health outcomes, and reduced quality of life.”
Theresa Zame is a stage-four lung cancer patient who is self-funding her medicine that she needs for a productive, better quality of life.
“Our most vulnerable are suffering and dying prematurely, and the Government needs to both stop being so cost-focused around medicines, and also better value patient’s wellbeing and their families welfare,” says Theresa.
“If the rest of the OECD can do it, so can we.”
As the collective group MyLifeMatters is calling for timely access to new and breakthrough medicines.
“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.
MyLifeMatters says there needs to be an increased investment and timely access to medicines to cater to the growing healthcare needs of the New Zealand population, and to keep up with the rest of the OECD.
The group is also calling for patient-focused wellbeing benefits to be included in decision-making processes on medicines investment by the New Zealand Government.
“Together, MyLifeMatters believes it’s possible to shape a future where all Kiwis have timely and equitable access to medicines as early as possible, politicians must act now,” says Malcolm.
The mission of MyLifeMatters is to raise awareness, promote policy changes, and engage politicians to ensure that there is equitable access to essential medicines for all Kiwis.
At the heart of there campaign lies a shared vision: everyone in New Zealand should have access to affordable and essential medicines.
I for one know the stress and burden caused through having to fund my own medications for Scleroderma with associated Interstitial Lung Disease (Scl-ILD), as we have to self fund Rituximab.
Rituximab unfortunately is not a funded treatment option for my condition, even though it can be used for other autoimmune diseases and disorders that have similar symptoms as mine 😦
We’ve had to go down this path as the regular funded treatment was proving to be ineffective in keeping my symptoms in check. We have since had to increase the occurrence of this additional medical regime on a four monthly basis to help with my situation. Which initially could have cost us approximately $50,000+ per year.
Thankfully our chemist found a biosimilar medication in Riximyo which will do the job just as well. However, this still equates to about $12,000 per year. We are extremely grateful for the assistance that my workplace provides through a health provision in helping to cover the lion’s share of this expense.
Tragically though over time this medicine has the potential to become ineffective as well and a medication that has been specifically designed to assist those with Scl-ILD in the US, is not funded currently within NZ, and would cost approximately $80,000 (at this stage).
It is currently on the Pharmac Funding Priority List but as noted above the average wait time could be anywhere between another 5 years or more before it is approved, if it is approved. Let’s just hope and pray that my condition doesn’t progress any further.
You can keep up to date with my health condition here.
Rare Disorders NZ (RDNZ) is currently working with Manatū Hauora on the development of a national rare disorder strategy, which they’ve long been calling for to ensure the health system recognises, and equitably meets the needs of, the 300,000 New Zealanders living with a rare disorder.
Find out more about the strategy here.
However, RDNZ are alarmed that despite Manatū Hauora working for the past year on this, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper [‘Achieving Pae Ora Through Primary Care’] on the Minister of Health’s vision for primary and community healthcare in Aotearoa. For more information about this concern read this article.
The following article was also written for the New Zealand Herald which may be of interest to many in the Rare Disease Community – MyLifeMatters calls for new medicines, urgent Pharmac investment
Blessings ’til next time 🙂
The life and times of Perry... 