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| Journal of the New Zealand Medical Association,
25-January-2008, Vol 121 No 1268
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Bringing epilepsy out of the shadows in New Zealand
Peter S Bergin, Lynette G Sadleir, Elizabeth B Walker
“The history of epilepsy can be summarised as 4000
years of ignorance, superstition, and stigma
followed by 100 years of knowledge,
superstition, and stigma.”1 So
began an editorial in the British Medical Journal (BMJ) 10
years ago, when a joint campaign to bring epilepsy out of the shadows was
launched by the International League Against
Epilepsy, the International Bureau for Epilepsy, and the
World Health Organization (WHO).
In the editorial, Kale pointed out that discrimination
against people with epilepsy and ignorance about
the disorder is worldwide. He pointed out that more than three-quarters
of people throughout the world who suffer from epilepsy are not currently
treated. The global campaign was launched in an effort to rectify this
situation.
Epilepsy is one of the more common neurological disorders.
If we assume that the prevalence of epilepsy in New Zealand is similar to that
of other Western nations (0.5% to 0.7%),2 then
there are approximately 20,000–28,000 people in New Zealand who have
epilepsy. The risk of having at least one epileptic seizure at some time during
one’s life is considerably greater, with figures suggesting that by the
age of 84, approximately 5% of people will have had one or more
seizures.3
The situation regarding the management of epilepsy in New
Zealand is certainly not as dire as it is in parts of the developing world. Yet
there is no doubt that negative attitudes towards people with epilepsy are
common here too. There remain many misconceptions regarding epilepsy in the
general community, and funding for treatments for epilepsy is
unsatisfactory.
Launch of the New Zealand League against Epilepsy (NZLAE)In an effort to improve the management of patients with
epilepsy here, a group of adult and paediatric neurologists formed the New
Zealand chapter of the International League against Epilepsy (ILAE) in November
2006. The chapter was ratified at the 27th
International Epilepsy Congress, held in Singapore in July 2007.
The ILAE now has chapters in 99 countries. Its goals
are:
The New Zealand chapter is for health
professionals with a particular interest in epilepsy. It is aimed primarily at
doctors but other health professionals are also welcome to join. The NZLAE is
hoping to improve the care of patients with epilepsy in a variety of ways:
Raising the profile of epilepsyThere is considerable ignorance about epilepsy within the
wider community, and an unacceptable degree of prejudice still occurs as a
result of this lack of knowledge. Epilepsy does not have a high profile amongst
those who make funding decisions regarding healthcare. This is probably, at
least in part, because many patients with epilepsy are socially disadvantaged.
People with epilepsy often have difficulty obtaining jobs,
and may be dismissed unfairly if they have a seizure at work. The NZLAE intends
to work with the lay group, ‘Epilepsy New Zealand’ to help raise the
profile of epilepsy within the general community. People within the broader
community need to be more confident in dealing with a person having an epileptic
seizure.
At present, many people are frightened when they witness an
epileptic seizure, but we believe that this is primarily because of ignorance
about epilepsy. We think that information on management of seizures should be
given to all children in schools, so that the stigma sometimes associated with
the condition can be reduced.
Access to new anti-epileptic drugsAlthough many patients with epilepsy have their seizures
controlled relatively easily, there are other patients whose seizures are
refractory to anti-epileptic drugs. In these situations, it is helpful to have
as many options as possible for treating patients. Several drugs have been
introduced to neurological practice elsewhere that are not currently available
in New Zealand. Foremost amongst these is levetiracetam, which is now widely
used throughout Europe, USA, and Australia. It has not yet been introduced to
New Zealand, for reasons that are not entirely clear to us.
The New Zealand chapter intends to work constructively with
both the drug company and the Pharmaceutical Management Agency of New Zealand
(PHARMAC) to ensure that this valuable drug is made available as soon as
possible for New Zealand patients.
ResearchThe New Zealand chapter intends to foster and promote
research into various aspects of epilepsy. Research projects currently being
undertaken by members of the NZLAE include an Internet recruitment and therapy
study and an epilepsy genetics study designed to find new epilepsy genes.
We are keen to explore the use of the Internet to recruit
patients for epilepsy drug trials. Although there are now numerous drugs
available to treat patients with epilepsy, there is surprisingly little
information regarding the optimal treatment of patients with particular epilepsy
syndromes. We have therefore created a database and website to collect
information about patients’ seizure types and epilepsy syndromes, and will
encourage neurologists to enter data on patients whose epilepsy is not easily
controlled.
We have recently commenced a pilot study in which we are
recruiting patients who have failed to respond to the first anti-epileptic drug
they were prescribed. Patients will be randomised to receive an alternative
anti-epileptic drug. We would like to recruit patients from throughout the
country over the next 6 months, and invite physicians, paediatricians, and
general practitioners to refer such patients to a neurologist or paediatric
neurologist during this period.
The primary focus of this pilot study is to test the process
of recruitment and data collection using the Internet. If we can demonstrate
that research can be readily conducted in this manner, we will collaborate with
epilepsy specialists in other parts of the world to run a series of studies
looking at the optimal management of different epilepsy syndromes. Readers
interested in further information about this approach to epilepsy trials are
referred to our recently published
paper.6
A significant proportion of the epilepsies are inherited and
due to genetic factors.7 The objectives of the
epilepsy genetic study are to describe the clinical features and genetics of
epilepsies found in families, and to identify genes for these epilepsies.
Children with epilepsy who have other members in their wider family with
epilepsy, and children with rare epilepsy syndromes will be recruited. These
individuals and their family members will be interviewed, a family tree will be
constructed and blood will be taken for genetic studies.
Each family will have their epilepsy characterised in
detail, which in some cases may result in new epilepsy syndromes being
identified. Where it is possible to find a causative gene in the family,
collaborators will perform molecular genetic analysis. Finding new epilepsy
syndromes and the genes responsible for these syndromes will allow more accurate
diagnosis and prognosis, and will hopefully lead to novel, improved
therapies.
A task force to promote research in epilepsy in the
Asia-Oceania region was recently formed, and the New Zealand chapter is now
represented in this body. The inaugural meeting of the task force was held at
the 27th International Epilepsy Congress, and
the president of the New Zealand chapter attended this meeting.
There is great enthusiasm from all member countries of the
Asia-Oceania group to perform collaborative studies. It was pointed out at this
gathering that 80% of the world’s population live in this region, and
relatively little study into epilepsy has been performed here.
Guidelines for the management of epilepsyWe intend to promote evidence-based guidelines to ensure
that New Zealand doctors give optimal treatment to their patients with epilepsy.
There are several areas regarding the management of epilepsy in which new
information is coming to light. Foremost amongst these is evidence that is
accruing from various international prospective pregnancy
registers.8
The New Zealand chapter of the ILAE intends to publicise
this material and promote guidelines to minimise the risk of an adverse outcome
to both the mothers and children. Similarly, there are other areas such as the
management of bone disease in patients with epilepsy where guidelines may be
helpful.
We intend to produce guidelines on the management of status
epilepticus, so that treatment can be standardised throughout the country. There
is evidence that the use of buccal midazolam can be effective as a rescue
treatment for some patients with epilepsy,9 and
we intend to educate health professionals that this as an alternative to rectal
diazepam as emergency treatment for patients with severe epilepsy.
We are delighted that PHARMAC has recently made a decision
to fund midazolam ampoules for use in the community.
Competing interests: None known.
Note: Any health professional that has
a particular interest in epilepsy would be welcome to contact the President, Dr
Peter Bergin (pbergin@adhb.govt.nz ),
or the secretary, Dr Elizabeth Walker (ewalker@adhb.govt.nz).
Author information:
Peter S Bergin, Neurologist, Neurology Department, Auckland City
Hospital, Auckland; Lynette G Sadleir, Paediatric Neurologist, Department of
Paediatrics & Child Health, School of Medicine and Health Sciences,
University of Otago, Wellington; Elizabeth B Walker, Neurologist, Neurology
Department, Auckland City Hospital, Auckland
Correspondence: Peter Bergin, Neurologist,
Neurology Department, Auckland City Hospital, Private Bag 92024, Auckland 1142,
New Zealand. Fax: +64 (0)9 3078912; pbergin@adhb.govt.nz
References:
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