Cancer Control Agency Report Fails Brain Cancer Patients
The report released today by Te Aho o Te Kahu (Cancer Control Agency) titled: "Understanding the Gap: an analysis of the availability of cancer medicines in Aotearoa" falls well short of the brain tumour community's expectations. The report compares funded access to cancer drugs between Australia and Aotearoa New Zealand and identifies 20 different medicine-indication pair gaps across nine different solid tumour types. No gaps were identified for brain cancer.
In Table 5.6 of Appendix 5, the report lists two treatments for brain tumours which are funded in Australia but not Aotearoa - bevacizumab (Avastin) and carmustine implants. Both treatments are rated "ESMO-MCBS score not available for the funded indication" (ESMO-MCBS is the assessment tool used in the study to measure clinical benefit) and so the study investigators sought advice from their team of clinical advisors. Herein lies the first problem - we cannot identify any of the clinical advisors who are neurosurgeons or neuro-oncologists, or even oncologists who regularly treat brain tumours.
Bevacizumab is assessed by the clinical advisors as "having no substantial clinical benefit compared with best supportive care". This is despite several New Zealand oncologists prescribing it to glioblastoma patients in the recurrent setting, after having to navigate the difficult question of whether the patient can afford to pay for it.
Many patients who decide to self-fund bevacizumab go on to benefit from vastly improved quality of life, and often extended survival. There is also the substantial benefit of reducing corticosteroid dose, which allows other drugs, especially immunotherapy treatments, to work better. These are the types of nuances which would be picked up if experienced neuro-oncologists had been sought for their advice.
The clinical advice for carmustine implants is listed as "no substantial clinical benefit over the relevant comparator", which is listed as carmustine injection. We don't believe this is a valid comparator because carmustine implants are chemotherapy-infused wafers inserted into the surgical cavity at the time of resection. This is done to circumvent the blood-brain-barrier and allow the chemotherapeutic direct access to tumour cells, which cannot be achieved through intravenous delivery. We don't know anyone who has received carmustine injections if they have not had carmustine implants.
Overall, the report fails to acknowledge any of the treatments for brain cancer which are funded in Australia and not Aotearoa in their analysis of the cancer medicines funding gap. The analysis is not much better across other solid tumour types, where several effective treatments have not been counted as they don't reach the level of "substantial clinical benefit" set by the ESMO-MCSB tool. The use of this tool is problematic as it eliminates many effective treatments and does not depict the real-world scenario where cancer patients are benefitting from these treatments every day.
Next week marks the start of Brain Tumour Awareness Month and on behalf of New Zealand brain tumour patients, Brain Tumour Support NZ is asking our health officials to sit up and take notice. We may be a rare cancer, and we may be small in number, but does that make us any less important?