David Cullinane (Sinn Fein)
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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.

Róisín Shortall (Dublin North West, Labour)
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The long-term illness scheme is a non-means tested scheme introduced in 1971. It provides free medicines and medical appliances to people with specified conditions. Some 16 conditions are covered by the scheme. Requests to expand the range of conditions are frequently made but at this point there are no plans to extend the list of conditions covered by the scheme.

People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependants may be entitled to a medical card. In the assessment process, the Health Service Executive can take into account medical costs incurred by an individual or a family. In recent times the situation with the assessment of applications on medical grounds has improved. There is a panel, headed by a GP, that assesses the medical applications. Those who are not eligible for a medical card may still be able to avail of a GP visit card, which covers the cost of general practice consultation.

Non-medical card holders and people whose illness is not covered by the long-term illness scheme can use the drug payment scheme which protects against excessive medicine costs. Under this scheme no individual or family pays more than €132 per calendar month towards the cost of approved prescribed medicines. The scheme significantly reduces the cost burden for families and individuals incurring ongoing expenditure on medicines. In addition, non-reimbursed medical expenses can be offset against tax.

The diagnosis and management of systemic lupus erythematosus takes place in a number of health care settings. Patients with lupus are generally under the care of a rheumatologist and other specialists as necessary, such as dermatologists. The programme for Government committed to reforming the current public health system by introducing universal health insurance with equal access to care for all based on need, not on ability to pay. The universal health insurance system will be underpinned by the principle of social solidarity. Every citizen will have a choice of insurer and will have equal access to a comprehensive range of curative services.

The Government is also committed to introducing universal primary care within its first term of office. This commitment will be achieved on a phased basis to allow for the recruitment of additional doctors, nurses and other primary care professionals. A universal primary care project team has been established - we had our first meeting last week - and it has been tasked with working through the issues relating to this commitment.

While I take the points made by the Senator, it has been decided that the policy to be pursued will be in respect of providing universal free access to GP services. There is a clear commitment that we will do that within the next four years. That will cover everybody in the population. We cannot do everything, unfortunately, but we are on a clear course in terms of opening access across the population.

David Cullinane (Sinn Fein)
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The reason I raised this issue is that I was contacted by a lupus sufferer. She pointed out that she and many people have found themselves in a position where they are unable to get the supports they require from the State because they simply are not there. She made the appeal, not only on her behalf but for all lupus sufferers and people who suffer from other illnesses, that they get the proper supports. I accept the Minister's bona fides that we will move towards an improved system at some point in the future but I regret that she does not intend to review the scheme. It would have been the right thing to do. I appreciate that we are in straitened economic circumstances but I still believe we should ensure that people have access to proper services and supports when they suffer from illnesses through no fault of their own.

Róisín Shortall (Dublin North West, Labour)
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I accept that people who suffer from lupus and those who suffer from other conditions would make the case to be included under the scheme. In an ideal world, we could do that but the policy we have decided on is to pursue free universal access to GP care. As I said, we cannot do everything. However, the Senator raised the issue of information being made available. I will check that with the HSE and revert to him on that point.