Friday, October 29, 2010

EpiPen funding and research

Most people understand allergy as something in the air that makes you sneeze. Many find it hard to grasp the concept that allergy can also be something you eat that makes you so sick it could stop your breathing or even your heart. Fortunately such severe reactions (anaphylaxis) rarely cause death, but they are becoming more common because of the increase in food allergy, particularly in young children.

No cure

At this time, there is no treatment or cure for food allergy: in fact we don’t really understand why it exists or is increasing in prevalence. But we estimate that every day in New Zealand about 10 babies are born who will go on to develop the condition. That makes around 3,600 new families every year who are suddenly faced with the unknown.

Undiagnosed, it can cause ongoing misery for the child with conditions such as severe eczema, constant stomach upsets, and even delayed physical development. There may also be repeated hospital visits for severe asthma attacks. The family may be coping with endless sleepless nights, frequent visits to the doctor, worry and concern for their child who never seems to be quite well, and hours every day applying creams to soothe eczema. They may be aware that avoiding certain foods helps, but unaware that their child could be at risk of a life-threatening reaction anytime, anywhere, that food is involved.

Impact on quality of life

Properly diagnosed, families can learn how to manage the condition, and reduce the symptoms through complete avoidance of the food concerned. This may mean a change of diet, more time spent on food preparation, and possibly some restrictions on day to day activities. They can also learn how to make sure their child gets adequate nutrition to replace what is lost through not being able to eat food containing such allergens as dairy, eggs, or nuts. And they will need to learn what to do if their child does have a sudden, severe reaction. Most importantly they will come to understand that this is a condition that requires day-by-day vigilance as well as planning ahead for every eventuality.

Most of the 35,000 New Zealand children affected will outgrow their food allergy by the time they start secondary school, but for some their allergy will be life-long. For teenagers and young adults, daily vigilance and planning ahead are strategies that are challenged by peer pressure; and some may be at risk of developing anxiety and even phobias over food. Adults may find their employment, social and even family life significantly restricted by food allergy.

Generation of food allergy babies - few specialists

We believe that many of those 10 ‘food allergy’ babies born every day are likely to remain undiagnosed for a long time, and their health and well-being (and that of their families) compromised as a result. (This is based oon the Statistics New Zealand's number of babies born each year, and the 4-6 per cent of young children who have food allergies.) This is because there is limited public awareness of the impact of allergies; and few dedicated services and resources in our health sector.

Meanwhile Pharmac continues to ignore the plight of thousands of people who need an adrenaline auto-injector to treat anaphylaxis but can’t afford the unsubsidised product on the market.

There is only a handful of paediatric and adult allergy specialists (a report in 2007 stated “the current number of specialist units and number of allergy/immunology specialists per unit in New Zealand is well below international benchmarks and inadequate to manage the burden of disease”. As a consequence, very few resources are available to assist health professionals (including general practitioners, paediatricians, nurses, lab technicians and dietitians). Meanwhile Pharmac continues to ignore the plight of thousands of people who need an adrenaline auto-injector to treat anaphylaxis but can’t afford the unsubsidised product on the market.
So how can you help us to do something about this?

Target set

Allergy New Zealand has set a target of $150,000 for research into food allergy in New Zealand. We need to know about the patterns of food allergy across different ethnic groups; prevalence and trends; and impact on health, families and communities in order to demonstrate the improvements needed in services and resources in the health sector. We want health services to be ready to take advantage of treatments that may become available for people with food allergy in the next decade. And we want to encourage New Zealand researchers to look at why food allergy exists and how to prevent it in the future.

You can help by making a donation to our Food Allergy Research Fund here, and passing this request on to your family, friends and colleagues. If you have experienced food allergy, tell your friends your story. We need people to understand that food allergy exists, it can have a major impact on life, but can be managed successfully with the right help, in the right place, in the right time.

Penny Jorgensen
Chief Executive

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