Tim Edmonds is the chief executive at Leukaemia & Blood Cancer New Zealand, a national charity that provides specialist support for blood cancer patients and their families while also funding research and advocating for improved patient care.
OPINION
You may have been surprised by the recent story of Christchurch woman Maureen King who is looking to move to Australia with her family to access a life-extending cancer medicine.
After all, National made a high-profile, pre-election promise to fund 13 cancer medicines in a bid to start closing the medicines gap between New Zealand and Australia. The Government got the ball rolling four months ago, providing Pharmac with a $604 million Budget injection which brought certainty for many patients.
So why is Maureen King looking to relocate? The answer is simple. Maureen has blood cancer, and the Cancer Control Agency report that National based its pre-election promise on took into account all cancers – except blood cancers.
Shane Reti, National’s health spokesman at the time, reassured blood cancer patients that it was a temporary imbalance. He said: “We are sending out a signal to the people with myeloma and the people with leukaemia, we understand, we haven’t forgotten you, we just need that piece of work to be done by the Cancer Control Agency.”
That “piece of work” is the long-awaited report which is soon to be released. But instead of blood cancer patients feeling reassured the Government will address the medicines gap, patients fear being forgotten, overlooked, and excluded from National’s cancer promise.
Blood cancer can affect anyone, at any age, without warning. Little can be done to prevent it, and unlike other cancers, there are no effective screening programmes.
In the absence of prevention and screening programmes, health systems worldwide have recognised that the most effective way to improve outcomes for blood cancer patients is to treat it with targeted medicines.
Encouragingly, modern medicines and immunotherapies are highly effective and can be curative for some, life-extending for others, and can provide many meaningful years of cancer remission.
But herein lies the problem.
New Zealand stands in stark contrast to the rest of the developed world because successive governments and health system decision-makers have failed to invest in these treatments.
In fact, treatment availability for New Zealand blood cancer patients is at least five to 10 years behind the global standard. The recent uplift in Pharmac funding doesn’t alter this reality. In fact, it threatens to compound it.
Blood cancer patients are being left in a devastating position that appears poorly understood by New Zealand’s health system.
Unlike other cancers, surgical intervention and radiation are typically not options for blood cancer. For the vast majority of diagnoses, effective treatment relies on life-extending and life-saving medicines, but these are not prioritised within our health system.
Many of these medicines have been sitting on Pharmac’s waiting list for years, deemed unaffordable. New Zealand’s medicines budget is the lowest of any country in the OECD, relative to GDP.
These drugs are funded in Australia. In New Zealand, patients diagnosed with advanced blood cancers are, sadly, more likely to be told there are no treatment options available to them.
While National’s pledge to bridge the transtasman gap in cancer medicines was widely praised by patient communities, the omission of blood cancers (of which there are more than 100 different types) represented a glaring inequity in policymaking.
The wait for this blood cancer medicines report has been crippling for the Kiwis who require clarity from Pharmac and the Government on the availability of medicines they so desperately need. The findings have been known since June but the report’s public release has been delayed month after month. For many, the report and the Government’s response to it will signal life – or death.
Pharmac has previously indicated that up to four new blood cancer medicines may be funded as part of their recent budget uplift but – unlike the 13 medicines for solid tumour cancers – there has been no guarantee that these will include the medicines within the blood cancer report; those that bring the most significant clinical benefit for patients.
More than a year after promises were made to patients, the blood cancer community is watching intently to see how their medicine gap will be addressed.
When lives are at stake, patients and their families rely on, and remember, the political promises made, and politicians would also do well not to forget them.