John Crown (Independent) | Oireachtas source

I thank the Minister of State for taking this Adjournment matter. I want to tell her about a particularly troubling illness called Huntington's disease on which I am sure she has accumulated some information. For the benefit of the uninitiated this is a disease which has an incidence of about one in 10,000 in the European population. It is a disease which is incredibly cruel in its trajectory. It is a genetic disease which is governed by a form of inheritance called autosomal dominant inheritance which means that if one has the disease there is a 50% chance one will pass on the gene to any offspring child. If he or she has the gene they will develop the disease. There are certain quirks in the genetics of the disease. It sometimes occurs in earlier manifestations in succeeding generations. People who courageously elect to have the test to see if they carry the gene, even though they are in good health, often do it to make important life decisions, reproductive decisions. If they carry the gene they know they are facing an utter inevitability of a serious illness which will give them catastrophic physical and mental decline. Typically, the time of the appearance of the first symptom to the time of death is about 20 years. Most people develop the symptoms during their mid-30s which means that during their latter young years and their early middle years they are developing severe progressive neurological abnormality, progressing ultimately to paralysis, dementia, heart failure, etc.

The reason I find this issue topical is that a citizen of our Republic wrote to me asking that I bring her plight to the attention of the House.

This was a young woman who had a husband in his early 50s who had been diagnosed with Huntington's disease and he would rapidly reach the stage of requiring absolute care and could no longer be cared for at home. He required, for want of a better word, institutionalisation in a nursing home. He was assessed there, as would any other resident of a nursing home be, and they have found themselves making a major contribution to the care in a commercial nursing home on the basis that they had an asset, namely, their mortgaged home.

I guess what really brought the matter to my mind was the fact that patients who have the disease do not automatically quality for a medical card. They may qualify for a medical card on the basis of a means test but they do not qualify statutorily because the disease is not on the list of conditions that grants automatic access to a medical card. The matter needs to be rectified. Patients will often get a medical card but, as things stand now, they must go through a renewal process even though the circumstances for people with the disease do not change. Let me rephrase that by saying that their circumstances do change because they get worse. It is cruel that people who have the disease are asked to renew medical card applications with the uncertainty that they may not get one. In truth, the condition is of such catastrophic severity and so uncommon that a caring society should make a provision that basic care associated with a medical card should be made available to people.

I know the Minister was dealt a miserable set of cards at the time he found himself in public office in terms of the public finances. I understand that there are a number of demand restriction measures that take place across the health, social and educational services. It is hard to escape the conclusion that the new focus on the assessment of "probity" for medical card applications has something to do with demand limitation.

I ask the Minister of State to take a special look at the plight of people who have Huntington's disease and other chronic neurodegenerative conditions where no cure is available and treatment is purely palliative. The diseases make people completely disabled and place an extraordinary burden on sufferers and their families. It is estimated that every Huntington's disease patient directly affects the lives of at least four other people in Ireland. I thank the Minister of State for paying attention to this Adjournment matter.