David Stanton (Cork East, Fine Gael)
Link to this: Individually | In context | 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.

Kathleen Lynch (Cork North Central, Labour)
Link to this: Individually | In context | Oireachtas source

I thank Deputy Stanton for raising this issue as it provides me with an opportunity to update the House on the matter. It is a serious issue. I acknowledge the impact on those diagnosed with narcolepsy who had previously received a pandemic influenza vaccine as well as the impact on their families. As Deputies are aware, immunisation is a simple and effective way of protecting children against certain diseases. It has saved more lives than any other public health intervention, apart from providing clean water. In spite of the obvious benefits that come from vaccination I acknowledge that there can be serious adverse outcomes for a small number of people arising out of vaccination.

More than 1 million doses of pandemic influenza vaccine were administered in Ireland during the pandemic. The Health Products Regulatory Authority is the statutory authority for licensing and safety of all medicines. As of 25 May the HPRA had received 74 reports confirming a diagnosis of narcolepsy in people who had previously received pandemic influenza vaccination. The priority of the Minister for Health and the HSE is that the individuals and families affected receive appropriate health care and supports. Therefore, the Department engaged with the HSE and the Department of Education and Skills along the lines suggested by the Deputy to ensure the provision of a range of services and supports on an ex gratiabasis. The ex gratiahealth supports provided include clinical care pathways to ensure access to rapid diagnostic treatment and ongoing clinical review; multidisciplinary assessment led by clinical experts which allow for the appropriate individualised health and educational supports to be put in place; counselling services for the individuals and their families; discretionary medical cards to allow unlimited access to general practitioner care and any prescribed medication; and ex gratiareimbursement of vouched expenses incurred in the process of diagnosis and treatment, physiotherapy, occupational therapy and dental assessments.

The HSE's advocacy unit acts as liaison with service and support providers and other Departments to facilitate access to required services. Staff from the unit are in regular contact with individuals affected and regularly meet representatives of Suffers Of Unique Narcolepsy Disorder, SOUND.

Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services. It is acknowledged that treatment and individual medical needs may have to be reassessed over time. Consequently, the services and supports provided are reassessed on an ongoing basis to take account of any changes in the individuals' conditions and circumstances. As Deputies may be aware, legal action has been initiated by 28 families alleging personal injury in which they are claiming the development of narcolepsy resulted from the administration of the pandemic vaccination. It would be inappropriate for me to comment on any of these cases. I acknowledge the impact on the lives of the people affected by narcolepsy and on their families and reiterate my commitment to the ongoing provision of appropriate services and support.

David Stanton (Cork East, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank the Minister of State for her response and for acknowledging the fact that this is a terrible condition brought on by the vaccine. I acknowledge the fact that vaccines are important and save many lives. This is an unintended side-effect of what happened.

A total of 74 people have been affected in Ireland. I understand a centre of excellence was supposed to be established in Temple Street. Can the Minister of State advise on the position and what progress, if any, has been made?

This was brought to my attention initially by parents of a student who has been affected and impacted by this particular condition. The student's life chances have been severely impacted in a negative way because of it. The student may not be able to attend university now because of the difficulty in studying and getting the points. Perhaps the Minister of State might have a discussion with her colleague in the Department of Education and Skills to review the matter and consider whether the students who are suffering from this condition through no fault of their own may be given some provision whereby they could attend university. Going to university was the dream of the student in question. This student wanted to attend university but is now concerned that this might not happen only because this condition was brought about by the vaccine administered at the time of the pandemic in the country.

It is a serious condition with a serious impact on people. Will the Minister of State comment on the need for more co-ordination - this is the main thrust of what I am raising - across Departments and agencies with respect to this condition as well as more information and access to international expertise? The number affected is small but the impact on these people, as the Minister of State has acknowledged, has been absolutely vast. Lives have been changed radically. Whole families have been impacted. Some people cannot be left on their own because of the condition. There is also the fear and concern of getting cataplexy and so on that goes with this. I look forward to the final response of the Minister of State.

Kathleen Lynch (Cork North Central, Labour)
Link to this: Individually | In context | Oireachtas source

This condition has a wide-ranging impact in terms of the ability to drive, travel alone and live independently. It has a major impact which is unimaginable. Higher education access and supports are available. Students with narcolepsy can access the disability access route to education, a college and university scheme which allows enhanced access to third level education for pupils with disabilities. Further details are available and I will make these available to the Deputy. Examples of some of the supports at third level include priority registration. Students with disabilities can be allowed to register earlier than general registration in each academic year. They can access recordings of lectures on audiotapes and transcriptions of recorded audiotapes of lectures. A range of supports is available.

Deputy Stanton's point is well taken in terms of the co-ordination because this is a lifespan issue. Not alone is it a lifespan issue but it is across all the areas of society that we expect to access and live through.

I will set out the arrangements for reimbursement on an ex gratiabasis including those for vouched expenses incurred because they are important. General practitioner visits are covered by the medical card. Consultant visits, hospital charges, prescription costs, opticians visits, dental costs, some costs associated with occupational therapy assessment and complementary therapies - in some instances these can be of help - travel costs to and from hospital and finally consultant appointments are included. Subsistence expenses have to be accompanied by receipts as do accommodation costs. A range of supports are in place to support people but only because it is such an overwhelming condition when it occurs unexpectedly, as it has in this instance. I will furnish the Deputy with the background briefing note. It may be of interest for those affected.