David Cullinane (Sinn Fein)

People who have long-term illnesses have a heavy load to bear in terms of cost of treatment, the effect on their lives and their ability to work. They deserve our every support in trying to live ordinary lives. The long-term illness scheme has not been revised since the 1970s and some very severe and long-term illnesses are not included in that list of illnesses. These include, as I understand it, Crohn's disease, Alzheimer's disease, ulcerative colitis and coronary heart disease, all of which have seen notable rate increases in the past number of decades.

I want to draw the Minister's attention to issue of systemic lupus erythematosus, or SLE as it is called, which is a chronic long-term auto-immune disorder that affects the skin, joints, kidneys, lungs, heart and brain, and which is more commonly known as lupus. Nine out of ten sufferers are female with the highest incidence occurring between the ages of 15 and 45. The symptoms of lupus are various, vague and often almost impossible to diagnose but many of the symptoms can be painful and severe. They include painful muscle swelling, skin rashes, fever, migraine and other neurological problems. They also include hair loss, weight loss, chest pain and lung problems, nausea, oral and nasal ulcers, high risk pregnancy and, in some cases, heart, kidney, brain and lung damage. While it can be mild for some, it can also be very severe and can affect vital organs such as the kidneys, heart, lungs and brain. The condition can cause severe attacks which can be triggered by stress, a virus or a traumatic experience, and environmental triggers such as the sun.

There is currently no cure for lupus. There was a time when lupus claimed many fatalities but, thankfully, lupus patients can now lead relatively normal lives, but only with the appropriate medication and the ongoing care of a rheumatologist. The condition can mean that sufferers will either spend significant amounts of money on treatments simply to be able to get on with work and life or they will be forced to go without. While there is provision for them in terms of the drugs payment scheme, that does not take into account the full cost of treatment.

The cost of treating the condition is not small. Many lupus sufferers require weekly check-ups with their GPs as well as visits to consultants, which can cost up to €150 per session. This is still not the full cost. We should not penalise people for this condition, especially in the current climate. If we had proper universal health care in the State, the call I am making today would not be so relevant. However, we are where we are with the health service and this issue remains one that must be examined by the Minister. I ask that the illness be included in the list covered by the long-term illness scheme.

On a related matter, aside from medication or treatment, there is a lack of information, resources and support available to people with lupus and their families. Many sufferers must effectively diagnose and treat themselves by looking up articles on the Internet to find more information. Indeed, this approach is becoming more common in Ireland due to the poor health resources available. We will shortly have a nation of expert amateurs working in the health service as doctors.

Does the HSE have any plans to provide more information and greater support on this condition? I ask the Minister to revise the list of conditions covered by the long-term illness scheme and to include lupus in it. It would make the lives of many people tangibly and significantly better. Will she agree that the list is outdated, given that it has not been revised since the 1970s? There is a range of illnesses, including lupus, not covered by the scheme but which have an impact on the quality of people's lives and which should be included in the scheme.