Leukaemia & Blood Cancer New Zealand is dedicated to ensuring that all New Zealanders with blood cancers and related conditions have access to the best treatment and care available.
We have regular ongoing conversations with Ministers, MP’s, health officials and health related bodies around issues that affect our patients.
Amongst many, there are currently three areas we are focusing on: Clinical Trials, Access to Treatment and Survivorship.
Access to clinical trials
Support for, and access to, non-pharmaceutical funded clinical trials in New Zealand can be inequitable. These investigator-led trials answer important research questions don’t carry industry funding. They do however, offer New Zealand patients access to international best practice and potentially better treatment outcomes.
We have identified different approaches by the DHBs, resulting in different access depending on where the patient lives.
We understand there may not be new money available, and that under current health direction there is a desire to see greater commitment to clinical trials from DHBs, but this needs to be more than lip-service.
We believe there is an opportunity to better support investigator-led trials within DHBs that focus on efficacy and continuous improvement of outcomes to patients, and potential cost-savings within the current health dollar.
We would like to see a directive from the Ministry that supports mechanisms to facilitate this type of clinical trial.
Access to treatment – immunotherapies
Access to new immune therapies is becoming an increasingly pressing issue. We are in the era of precision (personalised) medicines for cancer treatment. Things are moving quickly in this area with the advent of immune checkpoint inhibitors and medicines being designed from specific genetic targets. We see no demonstrable change in thinking as to how to evaluate these highly effective drugs within the current PHARMAC model which centres strongly on cost-utility-analysis evaluation.
We acknowledge that PHARMAC do well on moving quickly with savings with generic drugs. However with current review mechanisms, they don’t seem to have answers as to how to evaluate these medicines to get them over the funding threshold.
These medicines are the future of cancer care and New Zealand should be gearing up for this with novel solutions. Solutions are in play in other countries that we like to compare ourselves to. We would like to see this conversation opened and progressed. This could include introducing a ring-fenced cancer budget with outcomes data being collected over a two to three year period and cost utility analysis being implemented. There would be the option to de-list a medicine that is not performing as expected.
With current initiatives around faster cancer diagnosis and treatment we are seeing increased numbers of cured patients. As a society we often talk about fighting cancer, focus on that fight, and forget that an increasing number of people are surviving blood cancer. Whilst this is the desired outcome the long-term complications following a bone marrow transplant and treatment can be considerable.
Both medically and psychosocially the costs of surviving cancer can be huge – personal relationships often dissolve, not being able to work (or work to the level prior to diagnosis) means lower income into the household, and familial relationships can be forced to change (where the carer becomes the cared for). Mental health can also be a distressing issue for many survivors. There are insurance implications and often long-term health issues to contend with.
We support the Government’s health target of faster cancer treatment. We encourage Government to also be considering adding survivorship into the wider cancer treatment and services frame. By talking about surviving blood cancer, we will ensure that people are not forgotten once they have the all clear from their physician.
It is important for us to see this conversation on the table with thought being given to late-effects clinics, ongoing access to psychologists or counselling services. The primary care sector needs more education around the late effects of blood cancers to prevent further health issues.