Colm Burke (Fine Gael) | Oireachtas source

I welcome the Minister to the House. The matter I raise relates to Huntington's disease. A presentation was made to the Joint Committee on Health and Children last Thursday by Dr. Niall Pender, principal clinical neuropsychologist with Beaumont Hospital. Huntington's disease is an inherited, progressive degenerative brain disease. There is currently no cure. In Ireland at present, approximately 700 families are affected by the disease and they have no access to special services. The neurological consequences of Huntington's disease make those affected extremely vulnerable. Behavioural and psychiatric changes lead to fracturing of normal family supports and those affected are at increased risk of serious injury, homelessness, suicide, drug and alcohol misuse and exploitation. There is no known treatment to slow down or cure the pace of neurodegeneration, which generally leads to death over a 20-year period after clinical diagnosis. The clinical manifestations of the disease vary widely, but they generally include dysfunction in cognition, mood and voluntary motor control. There is currently no dedicated treatment team for patients with Huntington's disease in Ireland and it is in that context that I have raised the matter. Only 700 families are affected.

Last Saturday I spent some time with a family filling up an application form for a medical card. In this family, the wife must provide full-time care to her husband, who has Huntington's disease. On the basis of income it would seem they will not qualify for a medical card, yet it is clear that they need it on the basis of what they have to go through. For instance, the clinic they use is located in Dublin, which necessitates travel there every so often. Another issue is access to medication. The wife is not looking for carer's allowance; all she asks is that they get a medical card. Their only source of income is a pension. Given the small number of people affected, when dealing with medical card applications the Health Service Executive must take the disease into account when assessing entitlement. I accept that people might not fulfil the qualifying criteria financially, but the disease will not go away and there is no cure, although doctors might be able to stabilise the condition for a period. I have asked the Joint Committee on Health and Children to correspond with the HSE's medical card application office to ask that Huntington's disease be recognised and that when applications for medical cards are made people are not put through the appeals process or made to go back to the drawing board if they are unsuccessful. I urge the Minister to make the HSE aware that this condition should be given serious recognition when applications are made for medical cards.