PHARMAC not always a perfect model for specialised drug funding

Nearly nine years ago, New Zealand’s drug-buying agency PHARMAC, gave the all-clear to fund Glivec (also known as imatinib).

The funding of the drug has given much hope to Kiwis diagnosed with CML (chronic myeloid leukaemia), with most patients able to achieve remission. The course of this disease was markedly different 10 years ago when other medications were the standard treatment. At that time, most patients progressed to the advanced phase of the disease and a large number died as a result of CML.

At the time, Glivec was hailed globally as a new era in drug development, the first in a new era of targeted new medicines – and all these years later that has been borne out. Nearly all these New Zealandpatients treated with Glivec are still leading active and productive lives.

Whilst we at the Leukaemia & Blood Foundation are very, very pleased that there has recently been several drugs funded for haematology patients, the approval process for funding has – as is usual – been very much delayed, commonly over a number of years.

A lot of respected voices have been heard in the media recently applauding the PHARMAC model. We agree it is certainly true that the agency serves New Zealand very well with regards to funding generic drugs; and the supply of drugs for a mass market with an eye to containing costs. We do, however, note that there is a far less rosy picture for many patients who require access to high cost and highly specialised medicines. This applies to thousands of cancer patients and others with chronic diseases. We need a system that can factor in providing access to these types of medicines as well.

We readily acknowledge there is a finite budget, and careful evaluation, drug by drug, is necessary. What we are struggling with is the review system that is deficient and fraught with delays, often for up to years on end.

Whilst our organisation has no agenda to see PHARMAC dismantled, we do believe the model lets New Zealanders down in the area of these highly targeted specialised medicines. Patients are often not well served in getting timely access to drugs in the more specialised fields, such as the one in which we operate.

We also remain concerned with the complete lack of transparency in the current funding model. We know first-hand the challenges in extreme delays with access.  In the intervening period it’s very difficult to get information with regards to the status of a particular drug’s funding status. We also see decisions are often selectively evidence-based.

The treatment for patients our foundation supports, many of whom have life-threatening illnesses, is obviously extremely time-critical and most can’t afford such delays.  There is also sometimes a false economy at play, in the case of haematology patients often the lack of access to a pharmaceutical treatment can frequently lead to even higher costs of supportive care in a hospital setting, such as intensive transfusion regimes with platelets, red blood cells, immunoglobulins and other treatments.

PHARMAC will shortly announce the results of a review into the Exceptional Circumstances scheme which is also part of the equation, and very much so for smaller patient populations. Let’s hope that a sense of fairness and equity can be brought to bear, first indications from the consultation were that this was not the case.

Nine years on from PHARMAC’s funding of Glivec, we reflect on the effectiveness of its funding model for a small population. Glivec was called the silver bullet and, for those diagnosed with CML, it certainly has been. We’d love to see this success replicated throughout the system.

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