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

Wednesday, October 20, 2010

Aqueous cream can aggravate eczema

If you have a child with eczema and have found it doesn't improve after the use of Aqueous cream BP, you may have an answer.

A UK study has found that Aqueous cream BP actually reduces the thickness of healthy skin and aids irritation.

The study was carried out with six volunteers, who all had healthy skin. It as applied to different areas, and after four weeks it as associated thinning and dehydration of the skin.

However, the effect wasn't found in all areas of the skin tested, which the study suggests that the cream may not have the same effect on everyone who uses it. (You can read the story on our homepage and listen to an interview with Dr Vincent Crump on the subject.)

This is not the first time Aqueous cream has had a bad rap. Another UK study carried out a couple of years ago found preservative caused reactions in a significant number of users.

The team looked at the notes of 100 children aged 1-16 years of age attending a paediatric clinic at the Sheffield Children’s Hospital. Of the 100 children audited, 71 had used aqueous cream and of these 40 (56.3 per cent) had developed an immediate skin reaction.

A preservative, 2-phenoxyethanol (2-PE), is found in aqueous cream, and it is effective against a broad spectrum of microorganisms. There have been several reports of eczema and hives due to this preservative.

In New Zealand, the two nurse-led eczema clinics will not recommend the use of aqueous cream as a moisturiser for eczema. And it isn't mentioned at all in the Australasian Society of Clinical Immunology and Allergy's eczema care plans, which you can find here.

What have you found helps your eczema, or your child's eczema?

Tuesday, October 12, 2010

Mad Butcher honoured in This Is Your Life

Allergy New Zealand's Honorary Ambassador Sir Peter Leitch featured in This Is Your Life on TVNZ this past Sunday.

We have known for years what a good bloke the Mad Butcher is - and we're thrilled that the rest of New Zealand can see this too. We can't thank him enough for what he has done for Allergy New Zealand - not only has he donated and raised tens of thousands of dollars for the organisation, he has thrown an enormous amount of energy behind promoting us.

For more information on the show and to view some clips, click here.

Tuesday, October 5, 2010

Research fund launched to honour Mad Butcher

He has networked, nagged and bullied to raise tens of thousands of dollars through fundraising and personal donations for Allergy New Zealand and is truly deserving of the knighthood conferred on him in the Queen’s Birthday Honours List in June.

So how do you thank the Honorary Ambassador Sir Peter Charles Leitch QSM for all his wonderful support given to countless New Zealanders? Allergy New Zealand has acknowledged this by launching The Leitch Family Award for Food Allergy Research at its National Conference in August.

“This is a small way to thank you but it is the best way we can think of to acknowledge you,” chief executive Penny Jorgensen told Sir Peter. “On behalf of all those living with food allergies as well as everyone at Allergy New Zealand, we thank Peter and the Leitch Family from the bottom of our hearts.”

Sir Peter’s support and generosity over the past few years is immeasurable. Earlier this year, Penny spoke with him about plans to launch a fundraising campaign to establish a research programme into the impact and burden of food allergy in New Zealand.

“You immediately reached into your pocket and made a donation of $10,000 to launch this,” Penny said.

The organisation has been fundraising for food allergy research since May this year, and so far has close to $13,500, thanks to Sir Peter’s kick-start.

The research fund will be an ongoing and significant annual project for as long as research is needed, and Allergy New Zealand will continue to raise proceeds.

The Board has been working on a grants process, which it will discuss in more detail with Allergy New Zealand’s medical panel. However, at least one special grant will be made each year with the Leitch Family Award for Food Allergy Research.

The Food Allergy Research Fund was set up because at least 10 babies born everyday* go on to develop food allergies.

“We have been asked why we are putting our energy into research when there are so many other things the organisation needs to do,” Penny said.

“The answer is that in order to advocate for better allergy services, for an adrenaline auto-injector to be funded, for more support through government services and for national allergy and anaphylaxis guidelines to be adopted by schools and early childhood education centres (to name a few), we need to show the prevalence and burden of food allergies in New Zealand, and the cost of doing nothing to alleviate the burden. We have been working on all these things, but we can’t get much traction on these until we have the data and the evidence.”

You can make a donation by going to or by calling 0800 34 0800.

* Based on 62,960 live births registered in the June 2009 Statistics New Zealand; 6-8 per cent of children under the age of five are affected by food allergy according to international research. The 10 per day is the conservative estimate of 6 per cent of children who have food allergy.