David Stanton (Cork East, Fine Gael) | Oireachtas source

I thank the Ceann Comhairle for allowing me to raise this Topical Issue matter, and I thank the Minister of State for being present. Millions of doses of the vaccine Pandemrix were administered across Europe in 2009 and 2010 as a result of the response to the global H1N1 swine flu pandemic at the time. Studies have since demonstrated that this vaccine causes narcolepsy at a rate of between 1:16,000 and 1:50,000 doses. The disorder is also known as hypnolepsy. It is a chronic neurological disorder involving the loss of the brain's ability to regulate sleep and wake cycles normally. Another common symptom of narcolepsy is cataplexy which is a sudden and transient episode of muscle weakness accompanied by full conscious awareness typically, though not necessarily, triggered by laughing or crying and emotions such as terror.

This is a serious, lifelong and incurable neurological condition. The resultant sleep deprivation triggers the desire for irresistible sleep during the day. The Minister of State might confirm the figure but I understand approximately 70 people are believed to have been affected by the vaccine in Ireland. SOUND, a support group for sufferers of unique narcolepsy disorder, holds regular meetings. One of its concerns is the need for increased co-ordination between Government and State bodies when dealing with sufferers of the condition.

The reason I raise this matter is to ask the Minister of State to do some work on this area. A particular concern is the difficulty in accessing health and education supports. SOUND has suggested the establishment of a working group comprising representatives of relevant Departments, SOUND itself and possibly others who have experience of the condition. The working group would examine how supports and services could best be delivered to victims from early age into adulthood. The issue seems to be that the people who suffer from this disorder have to fight for everything. An expertise or understanding among many as to what goes on is required. It is a serious condition and one which has a huge impact on people's lives, many of whom are young. Will the Minister of State examine the possibility of drawing together the agencies? Supports are available in the HSE and these people are doing a lot of good work. There are four co-ordinators. However, as I understand it, they have no authority outside of the health system although such is required.

There is also a need for support for people over 18 years of age. People may have left secondary school and are going on to third level education. They also need continuous support. Getting the points to access third level is an issue as well. It is very difficult for people with this condition, who may have been grade A students prior to getting it, to study because they are chronically tired and always falling asleep. They need extra supports when studying and doing exams. Supports for travel are also required. The Minister of State mentioned young people wanting to travel.

There is also the issue of medication. Certain drugs, called orphan drugs, are available but not necessarily in pharmacies. Work needs to be done in this area too. I am interested to hear what the Minister of State has to say on this matter. I am seeking that awareness would be raised as well as seeking more support and, most important of all, co-ordination of the agencies under the aegis of Departments in order that these people can live the best lives possible.

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