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by Penny Jorgensen, Allergy New Zealand's chief executive
 The high-cost of the EpiPen continues to be a frustration for people who have been diagnosed as at risk of anaphylaxis (a life-threatening reaction) particularly if the trigger is a food that is very difficult to avoid. A recent study conducted by Auckland University students on the management of anaphylaxis in Auckland City schools also found many teachers concerned that the high cost prevented students from having an EpiPen at school, even when it had been prescribed. And doctors have also expressed their concern at patients not being able to afford a medicine that could at the least minimise significant injury and at most save their lives. Recent media coverage including the Listener’s feature article on food allergy (Feb 2) and subsequent ‘Letters to the Editor’ (issues Feb 9 and 23 and March 1) demonstrate the ongoing concern as well as the arguments (for and against) Pharmac funding for the EpiPen. Dr Moodie from Pharmac queries whether the $3 million (his estimate) it would cost is the best use of our medicine funding, given (according to the study he quoted) the very few deaths recorded from anaphylaxis, the ‘expensive’ cost of the device itself compared to an ampoule of adrenaline or an insulin pen, the difficulty in identifying the patients who should be prescribed an auto-injector, and that studies overseas show people who have been prescribed them don’t always carry them or know how to use them anyway. The Editor of the New Zealand Herald last year (28 April 2007) even went as far as to say ‘those who want Pharmac to pay for the EpiPen…will not concede their claim has been undermined by the (up to 6,000) allergy sufferers who, on their own initiative have bought the device…..perhaps they should try to see the bigger picture and deal less in reflex action, if only for the sake of their own credibility’. Early in 2007 Allergy New Zealand did indeed investigate ‘the bigger picture’ by reviewing and then making a submission to the Ministry of Health’s consultation document on ‘Towards a New Zealand Medicines’ Strategy’ released in December 2006. Our first surprise was that New Zealand didn’t even have a Medicines’ strategy, and that that was probably the single most important factor in Pharmac’s ability to continually ride unimpeded and rough-shod over so many key stakeholders, including patient groups and clinicians. However there were a number of other critical issues identified through this consultation process. One is the budget for pharmaceuticals. Essentially this has not been increased in any significant way for several years in spite of population increases and inflationary pressures. The end result is in real terms, we now have less spend on pharmaceuticals per head of population than most OECD countries and have fallen to about half the rate per head budgeted for Australia’s Pharmaceutical Benefit Scheme (PBS). So who is responsible? Actually, it’s not Pharmac, or at least only partially. In fact each District Health Board is responsible for determining the budget for pharmaceuticals (hospital and community) in its region, and then a final sign-off with the Minister of Health is negotiated between the DHBs and Pharmac annually. So in the bigger picture of things, voters who are concerned about the need for an increase in pharmaceutical spending should be asking things of politicians and their DHBs; taxpayers on the other hand may be pleased with Pharmac’s ability to keep within a relatively decreasing budget year after year. Another critical issue is the dual role Pharmac has been taking, in a sense de facto because of the lack of clearly delineated responsibilities in the medicines system. On the one hand Pharmac has been responsible for purchasing medicines at the best possible price, a role everyone acknowledges it performs exceedingly well. On the other hand it also assumed the responsibility of deciding which medicines to purchase, a responsibility which it has fiercely protected but provided no accountability for, certainly not against measurable health outcomes for all New Zealanders. And while it is appreciated that commercial sensitivity needs to be taken into account in the purchasing of medicines, Pharmac extended this to it’s decision-making and consistently rejected claims by patient groups and health professionals alike, such as that it was selective in the clinical studies it considered, took a combative approach when challenged, and camouflaged decisions with a lot of ‘spin’. Fortunately submissions to the Towards a Medicines Strategy were many and consistent. They endorsed a principles-based approach including equity and affordability for patients, and transparency and a great deal more collaboration between stakeholders in decision-making. The result is ‘Medicines New Zealand’ (released in December 2007), which sets the strategy within a framework of desired outcomes for New Zealanders, essentially access and use of quality medicines that are safe, effective and needed. The assessment of the safety and efficacy of medicines is be consistent with international best practice and based on a more positive relationship between the regulator and the medicines industry. The views of stakeholders including consumers are to be considered in funding application processes. As John Forman, Executive Director of the NZ Organisation for Rare Disorders, said in a recent press release (24 January) the strategy denotes a ‘significant change of direction….and Pharmac’s wings have been significantly clipped’. That is why it is a concern that Dr Moodie in his letter (Listener, February 23) seems to be continuing with the same old spin. The fact is that all of the issues he raises every time this matter hits the media could have been resolved if Pharmac had been open in its consultation over funding in the first place, with consumers and clinicians as well as the distributor. The fact that it wasn’t required to prior to the New Zealand Medicines strategy being launched is no excuse for its Medical Director to continue on the same bandwagon now. And as for the Editor of the Herald, hopefully he has seen the bigger picture as well – although I doubt the paper would acknowledge the significant flaw in their logic. By their standard, there is no need for a pharmaceutical funding scheme at all. This article appeared in the Autumn 2008 issue of Allergy Today. Subscribe to the magazine here. |