Sir Sam Neil joins the growing call for access to standard blood cancer treatments
It is so important that New Zealanders are able to access new, emerging and effective cancer treatments that are the standard of care in other parts of the world.” - Sir Sam Neill, actor, New Zealander, and stage 3 blood cancer patient, June 2023
For a high-income, developed country, New Zealand has a particularly poor system of evaluating and funding medicines. This system often leaves New Zealanders without access to new medicines and vaccines that are often the standard of care in other developed countries.
Please read the article here: Land of the long wait crowd. Problems in New Zealand's Medicine Funding System
Rodger Tiedemann: The cancer treatments you need are available, just not in NZ
By Rodger Tiedemann
5 Sep, 2023 05:00 AM
OPINION
It is distressing to have to tell my cancer patients, in each and every clinic, that effective treatments exist that could significantly extend their lives, but that sadly these treatments are not available in New Zealand.
We are not speaking of the latest cutting-edge medicines. Far from it. Instead, even routine cancer treatments that have been funded for years in other countries, and that are considered to be the standard of care across the Western world, are often left unfunded in New Zealand and are thus denied to Kiwis with cancer.
Regrettably, “strangled” access to modern medicines has become a pervasive characteristic of New Zealand’s healthcare, and has created a disturbing gulf between Aotearoa and other Western nations in the delivery of cancer care. It affects thousands of Kiwis each year.
Perhaps you don’t believe it’s that bad? From 2011 - 2020, New Zealand funded only one-third of the new medicines that were funded by Australia (51 versus 143; Access to Medicines Report, 2021). Even worse, during the same period, New Zealand funded only 10 per cent of the new cancer medicines launched in the OECD. Unsurprisingly, Te Aho o Te Kahu - the Cancer Control Agency of New Zealand - has identified 20 gaps in national cancer care, where cancer medicines are publicly funded in Australia but not in New Zealand.
Even medicines eventually funded in New Zealand typically face years of delay. In 2013, Kiwi patients waited roughly as long as Australians for medicines reimbursement (402 vs. 398 days respectively). By 2020, the wait time in New Zealand had risen to 1014 days, compared to 422 in Australia. Incredibly, our wait times continue to grow, and New Zealanders in 2023 now wait 7.7 years on average (median 6.5) for a new medicine to become publicly funded.
In my specialty of multiple myeloma, three drugs - carfilzomib, pomalidomide and daratumumab - remain unfunded in New Zealand, despite being widely available in other Western countries. Consequently, Kiwis living with multiple myeloma in 2023 are not benefitting at all from the considerable global progress that has been made over the past decade in treating this cancer and are still being offered a level of care limited to that provided circa 2014 in Canada or the UK.
As an example, daratumumab is a monoclonal antibody that revolutionised the treatment of myeloma when it was introduced a decade ago. It received accelerated approval in the US in 2015. Two randomized studies demonstrated that it reduced the risk of myeloma disease or death by an impressive 60 per cent. It has since been funded in 49 countries. But not in New Zealand. For cancer patients, treatment delayed is treatment denied. Pharmac’s half-decade-long deliberation on daratumumab is indefensible. Patients die waiting for it. Indeed, Pharmac’s quiet foot-dragging approach to bringing new cancer medicines to our shores is difficult to reconcile with the way the Government values life. It is depriving Kiwis of years of lifespan, and it is denying our communities their contributions.
Can we afford modern cancer treatments? New Zealand is not a poor country. We rank 33rd in GDP per person (in US$) from 262 countries and economies. That places us between Germany and the UK, and ahead of France, Italy, Japan and Spain. However, whereas those countries respectively reimbursed 173, 164, 125, 119, 153 or 108 new medicines between 2015-2020, New Zealand reimbursed only 20 (Medicines Australia, 2022). So why doesn’t New Zealand fund modern medicines?
New Zealand’s total health expenditure per person per year - US$6061 ($10,202) - is not miserly, and falls between the UK and Germany, and behind France. As a percentage of GDP it even appears generous. In contrast, however, New Zealand’s spending on medicines – the Combined Pharmaceutical Budget - is incomprehensibly tight-fisted at only 0.38 per cent GDP. That is less than a third of the average OECD national expenditure on medicines of 1.41 per cent GDP. That stingy 28 per cent expenditure, compared to the average of comparable countries, directly explains the lower availability of publicly-funded medicines in New Zealand. This anomalous bottleneck in medicines spending is strangling medical care in our country. Modern care requires modern medicines.
Fortunately, the problem can be solved. Pharmaceutical spending accounts for only 4 per cent of the health budget; therefore significant improvements in medicines access can be achieved without outsized changes in total health expenditure. A fix is possible.
When Pharmac was created in 1993 it realised admirable savings by rationalising and negotiating pharmaceutical contracts at a national level. It was a source of pride. Due to underfunding, it has morphed, however, into an agency that now creates savings by denying and delaying the introduction of effective new medicines. That’s not something of which to be proud. Government funding and Pharmac’s culture need to change.
Rather than touting savings made by denying Kiwis modern care, the Government and Pharmac should be proud to bring newer and better treatments to New Zealanders. They should prize expediency. Kiwis deserve this and we can achieve it.
Rodger Tiedemann is an Associate Professor at the University of Auckland; Antony and Margaret Morris Fellow in cancer research; consultant haematologist at Auckland Hospital.
Medicines Crisis Campaign events next week
Come and hear patient advocate Malcolm Mulholland speak about his personal journey with cancer, what cancers are prevalent in your community and what drugs you are missing out on, the stories of local patients who needed medicines, New Zealand’s medicine crisis and what can be done about it.
Venue: Globe Theatre, 312 Main Street, Palmerston North
When: Monday 4th September 7:00pm - 8:00pm. For more information, please click on this link to rsvp: Palmerston North Event
Next events:
Tuesday 5th September in Whanganui: Whanganui Event
Wednesday 6th September in New Plymouth: New Plymouth Event
Monday 11th September in Havelock North: Havelock North Event
For the full list of events please click here
MyLifeMatters launched at 6am today 28th August 2023
The MyLifeMatters campaign launched at 6am today!
MyLifeMatters is a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions calling for the New Zealand Government to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.
Visit the MyLifeMatters campaign website here to see the media coverage and find out about campaign events in your region.
Read the RNZ article on campaign here
New Zealand’s Medicine Crisis Campaign Launch
CLL Advocates NZ is proud to be joining Malcolm Mulholland with Patient Voice Aotearoa in a Nationwide campaign urgently calling for reform of Pharmac and an increase in its budget – and we need your help.
When: Monday 28 August at 6.00 am!!
Where: 2-8 Anzac Ave, Auckland CBD (Beach Road end)
We’d really love to have some CLL patients, friends, family and supporters there, the more the better, preferably with signs. We’ll post more details as they become available including information on events in other cities. You can follow Patient Voice updates here.
If you have other suggestions or ideas to help this great cause, please contact Diane Ward here or at dianew564@gmail.com
Bitter pill: New report finds NZ lags behind in timely access to medicines
The Shawview Report, commissioned by Johnson & Johnson, is a valuable, timely round-up of the inherent problems in our medicines funding system and offers some good solutions, including innovative funding mechanisms in action in other countries, as well as the immediate need to fund Pharmac’s current backlog of approved medicines waiting for funding.
If you're contemplating taking a proactive approach to establish connections with politicians before the upcoming election, with the aim of advocating for issues related to Chronic Lymphocytic Leukaemia (CLL) including the deficiency of new medications and treatment protocols, these resources – the report and the interview featuring Brendan Shaw – represent invaluable tools to help assist you in this process.
Listen to the RNZ interview here: RNZ Shawview report interview
Here is the report
Dr Ruth Spearing - New CLL Advocates Trustee
We are delighted to announce that Dr. Ruth Spearing will be joining CLL Advocates as a Trustee.
Dr. Ruth Spearing is a highly esteemed haematologist and medical researcher with a keen focus on CLL. With over three decades of experience, she has led internationally acclaimed research in the field of blood cancers. In 2008, the Ruth Spearing Cancer Research Trust was established, providing invaluable support for haematology research in the South Island.
Throughout her career, Ruth has held various leadership positions, serving as a Board Member of the New Zealand Medical Association, a member of the Canterbury District Health Board Clinical Board, and as Chair of the Canterbury Hospitals Medical Staff Association.
Welcome, Ruth! We are honoured to have you as part of our team.
Health Technology Assessment Conference
Last week one of our CLLANZ Trustees, Catherine Isaac, was very lucky to have the opportunity to attend an international Health Technology Assessment conference HTAI Conference 2023 in Adelaide.
Among the 600 attendees from around the world were patient advocacy groups, researchers, academics, public policy makers, industry, and drug funding agencies.
There was quite a strong New Zealand presence, including other patient advocacy groups and Pharmac, and it was a good opportunity for us to build relationships and have some informal discussions during the conference breaks.
Overall, the conference was an amazing opportunity to learn from international best-practice models of patient involvement in medicines funding, and to make personal connections with individuals and organisations with similar objectives to ours.
A key theme was innovation in medical treatments, health system policy and patient care. We hope to use the lessons from this to make meaningful gains in improving the lives of New Zealanders living with CLL, through timely access to effective, international standard-of-care treatments.
CLL Advocates Newest Trustee
A very warm welcome to our newest CLL Advocates NZ Trustee, Diane Ward.
Regular followers of our Facebook group will know Diane well, and we’re delighted she’s willing to join the Board and contribute her skills and lived experience and her in-depth knowledge of CLL to our work.
Here is a little bit about the lovely Diane:
Diane Ward is a retired primary teacher, principal, and ESL teacher. She is well travelled and has lived and worked in several different countries.
She was diagnosed with CLL in 2018. It came as a shock and since then she has made a number of lifestyle changes. She has researched CLL and is passionate about fighting for the funding of drugs that are readily available in many other countries as first line treatment.
She would like everybody who is diagnosed with CLL to have a funded initial appointment with a specialist who could explain its intricacies.
Diane is a regular contributor to our Facebook group and is keen to encourage wider engagement in discussion and active support for our efforts to access better treatments for New Zealanders living with CLL.
Health Select Committee's report into the Therapeutic Products Bill
On Tuesday 14th of June, the Health Select Committee's report into the Therapeutic Products Bill was released. It can be accessed here: Therapeutic Products Bill final report
If you have had the chance to thoroughly review this report and have gained additional insights, please do to share your findings to: clladvocates@outlook.co.nz or via our CLL Advocates Facebook group: CLL Advocates Facebook group
We have a significant amount of information to cover, and we are particularly concerned about the future of New Zealand's clinical trial framework, especially regarding the absence of an equivalent to Section 29.