Along with cost effectiveness, Pharmac doesn't list its priorities so we don't know how Pembrolizumab ranks against other drugs. We are asked to trust Pharmac with no shared information even when its decisions differ from those of similar countries.
We have no effective treatment for melanoma. This offends our Kiwi sense of fairness and has led many to call for politicians to step in. But we don't want politicians deciding what drugs to fund - there are other solutions.
Drug effectiveness should be considered separately to cost. We should be told the outcomes of this, otherwise confused debates about effectiveness will continue. We could implement a "drug scorecard" using a validated scale like the European Society of Medical Oncology's Magnitude of Clinical Benefit scale - this would give more transparency and lead to a greater sense of fairness. Without this, claims of a "wonder drug" can go unchallenged.
We need goal posts for funding. This could be a set cost-effectiveness point, otherwise we would risk writing drug companies a blank cheque. It may be reasonable that the budget could grow if additional health gains are "bought". If a drug falls short, then there would be little grounds for complaint.
With no end in sight, we need agreed timeframes for assessing funding applications. Patients are forced to weigh-up whether to foot the bill for treatment themselves or wait for a Pharmac decision with no guarantee of a positive outcome.
Some areas are missing out - we need to recognise that. Fairness is important, as well as raw incremental cost-effectiveness ratios.
Where there is early but compelling data for an area of high unmet need, such as melanoma, a new category of "breakthrough therapy" could permit temporary funding to be granted with the collection of use, effectiveness and toxicity data. It would better inform decision-making while allowing patients, who would otherwise have nothing, to receive treatment. To the best of my knowledge, Pharmac has not done this before.
We need to account for the savings drugs can bring - patients may avoid the need for further radiotherapy or surgery if drugs work well. A period where we collected local data would help accurately inform the true cost and benefit of a drug in our entire health care system.
A temporary funding category would also give time for the near-identical drug, Nivolumab, to enter the market, and Pharmac could use that to lever the price down. This would mean greater cost initially, but bigger savings in the long run.
Currently patients feel that their voices are not being heard by those deciding their fate. Without transparency and accountability, they are left feeling cheated.
Pharmac is good, but not perfect. Without change, we are doomed to have this debate again.
Dr Chris Jackson is medical director of the Cancer Society of New Zealand.
