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July 14 — Anaphylaxis sufferers are the big losers with Pharmac’s tightly controlled budget and all-or-nothing funding approach to community pharmaceuticals.
This is the message from Allergy New Zealand as makes another push for funding of life-saving adrenaline auto-injectors. “This means that the Ministry of Health and District Health Boards are funding much less per head for community pharmaceuticals than Australia for instance, and patient groups are forced to compete with each other for funding,” says the national not for profit organisation’s chief executive, Penny Jorgensen. “There does not seem to be any avenue for compromise, for example even a partial subsidy would help many people with this life-threatening condition. It just seems that, according to Pharmac, the health and quality of life of anaphylaxis sufferers is not as valuable as other patient groups”. Anaphylaxis, a potentially life-threatening allergic reaction, is far more prevalent than once thought, with an Australian study estimating that it occurs in one in 166 children. Other studies show that whereas anaphylaxis used to happen mainly in hospital settings to drugs and contrast media, now at least half happen in community settings, mainly to food. Symptoms of anaphylaxis such as severe restriction to breathing or sudden drop in blood pressure leading to cardiac arrest usually occur within minutes of the person for example, ingesting sometimes only a trace of the food they are allergic to, or being stung by a bee or wasp. The internationally recognised life-saving treatment is an injection of adrenaline into the thigh muscle. “The death of a 38-year-old man last month from anaphylaxis following a suspected allergic reaction to food in a restaurant has highlighted just how dangerous and unpredictable these reactions can be,” says Mrs Jorgensen. Currently, Pharmac funds an ampoule of adrenaline, needle and syringe and, according to Pharmac’s Medical Director Dr Peter Moodie on national radio recently, this is perfectly acceptable. “However we believe most physicians are very uncomfortable with prescribing a needle and syringe given the difficulty patients and carers have in using them properly even after training in a controlled situation. “In an emergency, while they or their child is actually having a life-threatening reaction they somehow have to measure a dose of adrenaline into a syringe, assemble it with the needle and then inject it accurately into their thigh. In fact as far as we know the only reason the needle and syringe device for adrenaline is prescribed at all is because the patient can’t afford the EpiPen,” says Mrs Jorgensen. The needle and syringe approach to treating anaphylaxis is also inappropriate for children, where self-administration is impossible, she adds. “For every child at risk of anaphylaxis, you have at least another seven people affected: parents, grandparents, teachers, friends. These people have to be trained how to treat anaphylaxis appropriately and the ampoule approach is very difficult. “The only safe option is the EpiPen.” Dr Moodie also stated that an Auckland study by pathologists showed only four preventable deaths from anaphylaxis in the 21 years to 2004. “This is misleading on several counts,” says Mrs Jorgensen. “The study only looked at coronial autopsy cases. There are many other studies that show anaphylaxis, both deaths and cases patients have survived, is frequently misdiagnosed almost 60 per cent of the time, and/or under-reported. They are often recorded as severe asthma or cardiac arrest, for instance”. The EpiPen is also, in Allergy New Zealand’s view, not just about preventing death or serious injury in the event of an anaphylactic reaction, but is necessary for people to have access to them so they can lead some kind of normal life. “Otherwise people with anaphylaxis to food might just as well shut themselves in their homes and never go out. It’s like having a seat belt when you hop in a car. You might not get into an accident, but if you do at least you have a far better chance of survival.” Allergy New Zealand is also concerned at Dr Moodie’s comments in regard to the cost and compliance. “The basic cost of an EpiPen is around $130. This works out to less than $11 per month, which is a lot less than many other medicines funded by Pharmac,” Mrs Jorgensen points out. “And while we agree with his comments about the need for education to ensure people know how to use their EpiPen and always carry it with them, we also point out that Pharmac is actually legislatively responsible for promoting the responsible use of medicines. We would be happy to work with Pharmac and the Ministry of Health to provide education – currently we have to fundraise to provide anaphylaxis education around the country.” Since the death in Auckland, several people have approached Allergy New Zealand after they have had anaphylactic reactions in restaurants or cafes and have ended up in hospital for emergency treatment. “The trouble is these incidents are not required to be notified to authorities and the patients concerned are too ill or don’t know they should let the New Zealand Food Safety Authority know, so no-one is keeping track. It is really important to report to them or their local public health authority as the only way to effect any change is for the allergic community to band together and speak up,” Mrs Jorgensen says. |