Marie Moloney (Labour)

I welcome the Minister to the House. Given that he has a busy schedule I thank him for taking the time to attend to debate the motion.

I commend the Fine Gael Senators who have highlighted the issue and tabled the motion. Each year brings with it a new and rare disease and, unfortunately, it is impossible to have the expertise at hand to deal with each disease. While doctors specialise in a specific area of medicine it would be impossible to have a consultant for each disease.

This is why it is important to have a clinical care programme specifically for patients with rare diseases. This programme could guide and assist patients to accessing the right course of treatment and ensure a specialist is found to deal with the disease as quickly as possible, be it in or outside the country.

A very close family member was diagnosed with the rare blood disease, amyloidosis, just before Christmas 2010. There are only two places where this disease can be dealt with - the Royal Free Hampstead in London and the Mayo Clinic in the US. Until such time as an appointment could be made for him, he was advised to spend Christmas with his family and prepare them for the worst as it would be his last Christmas. He had been given six months to live. At the very first consultation in London, however, my relative was informed by the specialist that he could cure him and cure him he did. Can one imagine the agony that young man, his wife and his three school-going children went through until he saw the specialist? Had a clinical care programme been in place and the right information provided, the young man could have been spared all this agony.

Amyloidosis is a western disease with 500 cases a year diagnosed. Not everyone with the disease can be cured but there is help. Some diseases, although not really rare, often go undetected such as Lyme disease. It is prevalent in the Killarney area because of the high deer population there. Although beautiful to look at it and a great attraction to scenic routes in Kerry, deer may also pose a serious threat to human health. It is a little-known fact that one can contract Lyme disease from deer populations that harbour ticks which carry the disease. One can come into contact with ticks just about anywhere but one's chances are greater in wooded areas or places with high grass and weeds. Ticks need large mammals for hosts as they feed off their blood. Deer are one such host. Some ticks carry Lyme disease and because they have an anaesthetic property in their jaw, one might not even know one has been bitten. The symptoms of Lyme disease can be very similar to multiple sclerosis, MS, lupus or fibromyalgia. If the disease is caught an early stage, it can be treated effectively with antibiotics. However, if not, recovery, if it happens at all, can take years.

In the UK last year, there were 2,000 cases of Lyme disease. It is likely there is a large number here too. However, we are not sure because it is not a notifiable disease. Some patient advocacy groups suspect the Killarney area is particularly infected. We should be highlighting awareness, encourage quick diagnosis and treatment of this debilitating disease. Occasionally, a patient may carry Lyme disease but have no outwardly obvious symptoms. Ill health may crop up years later following an illness or period of stress. This leads to decimated or late Lyme disease where symptoms are similar to MS, chronic fatigue syndrome and Parkinson's disease.

I am delighted the Department of Health is reviewing the existing strategy of addressing patients with rare diseases and, hopefully, a new strategy will emerge. Will the Minister advise the House as to how this review is progressing? When a patient is diagnosed with a rare disease, they can be off work for some time. My family relative was off work for six months but when he tried to explain his illness to his employer and work mates, they did not know anything about it. The motion calls for a suitable information system which could assist employers and employees in knowing how rare disease patients are affected.

I recommend the motion to the House and hopefully it will be supported by all parties.