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Chief executive Penny Jorgensen wrote in the autumn 2010 issue of Allergy Today magazine. To read more articles like these and access the member's only section of this website, join now.
Ernest Hemingway wrote: “The dignity of movement of an iceberg is due to only one ninth of it being above water.” It is an apt description of Allergy New Zealand: a huge amount of activity going on below the waterline, with only the peak visible to the eye — hopefully looking dignified of course. As an example, a major goal for us is getting the adrenaline auto-injector (such as EpiPen or Anapen) onto the Pharmaceutical Schedule. The cost of the auto-injector prescribed for those at risk of anaphylaxis is prohibitive, particularly if you or your child needs two at a time. It is the one issue that dominates enquiries to Allergy New Zealand above all others: “Why isn’t it funded?”; “I can’t afford it”; and “How can I get one for my child?” Our view at Allergy New Zealand is it is a disgrace that it is not on the Schedule and therefore subsidised for all who need one. And so we spend a lot of time working on this one goal. However, as written in previous issues of Allergy Today, the situation is complex and requires a lot of research and understanding of government policies and, more specifically, the place medicines take in our health sector. In an information sheet entitled ‘The funding environment’, Pharmac describes itself as having four main roles, one of which is managing the Pharmaceutical Schedule, the list of government-subsidised medicines. In the same sheet it also says: “Pharmac must always consider the impact of its decisions on all New Zealanders. While it is understandable that there is sometimes very vocal support for funding one particular treatment, the impacts on others must also be taken into account. Every decision to fund a medicine means another may not be funded, irrespective of how big the budget is….” Translated into ‘real speak’, this means that Pharmac does not respond to public pressure. The herceptin campaign provides evidence of that; it was not Pharmac who ‘caved’ following years of public marches and petitions, it was the incoming National Government. The Pharmac process requires an application, usually from a pharmaceutical company but sometimes from a patient body, to be assessed by the Pharmaceutical Therapeutic Advisory Committee (PTAC). They then make a recommendation to Pharmac. An application in respect of the adrenaline auto-injector was approved some years ago and recommended by PTAC for funding, with a ‘moderate’ level of priority. Pharmac then did its ‘cost utility analysis’ and determined it wasn’t value for money i.e. that funding the adrenaline auto-injector would not be cost effective in terms of health gains compared to funding another medicine for another health condition. Allergy New Zealand has spent some time getting to grips with this ‘pharmacoeconomic’ approach, and understanding the implications. What is obvious is it’s a highly selective process. Pharmac is able to choose what to consider and what to prioritise without accountability to the general public other than staying within its admittedly limited budget. So while we need to generate political support — and members can help with this by supporting petitions, visiting their members of Parliament etc — we also need to present a case to Pharmac that meets their criteria in such a way that it is practicable for them and the distributor to enter negotiations. Developing and presenting this case currently generates a lot of the unseen ‘below the water’ activity. And much of this is taking two steps back to do research and show that there is a problem and hence a need. You can help by donating to our Food Allergy Research Fund here. |