Accessing inaccurate information and not getting a proper diagnosis

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Media Release
14 May 2009
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Barriers to access may lead to health risks: Allergy New Zealand
Accessing inaccurate information and not getting a proper diagnosis can put allergy sufferers’
health at risk, warns Allergy New Zealand.
“There are barriers to accessing proper medical advice, so out of frustration people may be
tempted to self-diagnose, turn to alternative practitioners or use information from websites
that has no scientific basis,” says the organisation’s chief executive, Penny Jorgensen.
The problem is access to allergy services. A recent study into the burden of allergy found the
current number of specialist units and allergy/immunology specialists per head of population
in New Zealand is well below international benchmarks and is inadequate to manage the
burden of the disease1.
Last year, Allergy New Zealand made submissions to district health boards throughout the
country to improve access to allergy services.
“We are concerned at the number of people, and adults in particular, who are not having their
allergies managed effectively. This has ongoing debilitating effects on their health, and we
are really concerned at the risks of unidentified anaphylaxis2, the most severe form of allergic
reaction,” Mrs Jorgensen says.
1
2
ASCIA, The Economic Impact of Allergic Disease in Australia: Not to be Sneezed at; 2007
Anaphylaxis is the most severe form or allergic reaction often affecting several parts of the body, including
either the respiratory system, cardiovascular system, or both. Symptoms typically occur within minutes of
exposure and usually develop rapidly. It is potentially life-threatening and must always be treated as a medical
emergency.
A study examining anaphylaxis presentation to Auckland Hospital found that one quarter of
these cases may potentially have been prevented if patients had been evaluated and educated
by a clinical immunologist or allergist following a previous reaction.3
It is hoped that Allergy Awareness Week (17-23 May 2009) will increase public and
professional appreciation of the impact of allergic disorders on quality of life and the
economic impact to society, and get the allergic public to be more aware of where they get
their information.
One in five New Zealanders suffer from allergic diseases, and symptoms range from
relatively mild to severe and potentially life-threatening4.
Anaphylaxis is not as uncommon as previously thought and has actually tripled in the past
decade, with the majority of hospitalisations being triggered by food in children aged under
five years5.
“In children, uncontrolled allergic rhinitis can affect sleep and impair learning, memory and
behaviour. Adults are affected similarly, and the impact is even more far reaching because
hay fever has been found to contribute to accidents and reduce productivity,” Mrs Jorgensen
says.
People with food allergies are also at significant risk, and added to this is the cost of
emergency medication in the case of anaphylaxis.
“We still can’t understand why Pharmac will not fund the adrenaline auto-injector – EpiPen.”
Because there are barriers to access to some treatments and diagnostic services, the danger is
the large number of people who turn to non-conventional methods of diagnosis and treatment,
she says.
3
Smith and Empson 2007
4
ASCIA, The Economic Impact of Allergic Disease in Australia: Not to be Sneezed at; 2007. Letter to Ministry of
Health from ASCIA’s president, Dr Raymond Mullins, and Chair of the New Zealand Immunology and Allergy
Group, Dr Penny Fitzharris.
5
Poulos et al, Trends in hospitalisations for anaphylaxis, angioedema and urticaria in Australia, 1993-1994 to
2004-2005, Journal of Allergy and Clinical Immunology, 2007 Oct; 120 (4): 878-84
Each year, 50–70 per cent of adults and children with allergic disease consult alternative
practitioners6..
The Australasian Society of Clinical Immunology and Allergy7 (ASCIA) says unorthodox
testing without scientific evidence or accuracy can give patients a diagnosis for a condition
that does not exist and can result in delayed appropriate diagnosis and treatment.
Paediatric immunologist and ASCIA member, Dr Jan Sinclair, says this is particularly
dangerous for people who have a true, IgE-mediated, food allergy.
This is highlighted by a recent coroner’s inquest into the death of a man in Ireland, who
received treatment for his peanut allergy by an alternative practitioner and died after being
‘cured’, she says.
“People go down this route because of a lack of understanding of the risks involved for those
with true food allergy. Sometimes treatment from unconventional practitioners is seen as
effective because the person never had a true food allergy,” she says.
Studies have found that up to 25 per cent of people believe they have an adverse reaction to
food, and the term ‘allergy’ has been hijacked to describe a number of conditions including
intolerances. However, food allergies affect 6-8 per cent of children and 2-4 per cent of
adults.
Food intolerances can be difficult to diagnose, and people may turn to self-diagnosis.
“Removing foods from the diet without an accurate diagnosis often results in unnecessary
dietary restrictions that are nutritionally inadequate,” Dr Sinclair says.
For children, there are long-term implications for removing major food groups such as milk,
which has calcium and fat vital for normal development.
6
Mullins et al, Non-conventional approaches to allergy testing: reconciling patient autonomy with medical
practitioners’ concerns, Medical Journal of Australia 2005; 183(4):173-174
7
ASCIA is the peak professional body of allergists and immunologists in Australia and New Zealand
“There is also the impact on social functioning. Removing foods limits a child’s ability to
participate in normal childhood activities, so if you are going to restrict foods you need to
make sure you have a correct diagnosis.”
Although access to allergy services needs improvement, this has been changing for paediatric
services. Up until last year, Dr Sinclair was the only paediatric allergist in the public health
system and she has since been joined by Dr Shannon Brothers at Starship Hospital.
Dr Sinclair has also established a Paediatric Society Allergy Special Interest Group, which is
made up of paediatricians from throughout New Zealand who are seeing children with
allergies. Some centres already have services up an running, while many are planning
dedicated paediatric allergy services in their regions.
“There is enormous competition for other health services, but there is definitely a recognition
that there is a need for allergy services,” she says.
Christchurch, for example, which only had an adult allergy service, now has a dedicated
paediatric allergy clinic with access to diagnostic facilities.
Allergy New Zealand is using Allergy Awareness Week to launch its new resources,
including a series of three bookmarks, a pamphlet on anaphylaxis and posters aimed at
educating the food service industry.
Many community and school libraries across the country will also be showcasing the
organisation’s resources in order to raise awareness and access to accurate information.
END
Local family for interview available on request
For further information contact:
Inga Stünzner, Allergy New Zealand, 09 623 3912 or 027 640 4254
Note
Allergy New Zealand is a national not-for-profit organisation that provides support, education
and information for people with allergies and their families. It also provides resources for the
community to help ensure a safe environment for allergic individuals from eating out safely
to managing potentially life-threatening allergies without fear to providing guidelines to
schools and early childhood centres. Visit www.allergy.org.nz for more information and to
links to other credible websites.
Allergy Awareness Week is an Allergy New Zealand initiative.
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