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No plans to revise scheme for chronic illness - despite no update since 1970s

A number of chronic diseases are not being covered by the government’s scheme for long term illnesses, including Crohn’s disease, Alzheimer’s disease, ulcerative colitis and coronary heart disease – but there are no plans to revise it.

A young boy with Crohn's disease sitting up in hospital bed (image posed by model)
A young boy with Crohn's disease sitting up in hospital bed (image posed by model)
Image: John Birdsall/John Birdsall/Press Association Images

THE DEPARTMENT OF HEALTH has no plans to extend the list of conditions covered by the Long Term Illness Scheme, despite several chronic conditions not being included in the programme.

People who avail of the Long Term Illness Scheme can avail of drugs, medicines and medical and surgical appliances without charge. It was introduced in 1971, under the Health Act 1970 – arising from a non-statutory scheme established a few years earlier to supply free products to people being treated for diabetes.

The scheme is open to people suffering “a prescribed disease or disability of a permanent or long-term nature”, and recognises the following conditions:

  • Mental handicap
  • Mental illness (for people under 16 only)
  • Diabetes insipidus
  • Diabetes mellitus
  • Haemophilia
  • Cerebral palsy
  • Phenylketonuria
  • Epilepsy
  • Cystic fibrosis
  • Multiple sclerosis
  • Spina bifida
  • Muscular dystrophies
  • Hydrocephalus
  • Parkinsonism
  • Acute leukaemia
  • Conditions arising from use of Thalidomide

However, the scheme has not be updated since 1975, a spokesperson for the Department told TheJournal.ie. Among the conditions not recognised are 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.

In 2009, a group of young people suffering from inflammatory bowel disease published a patient manifesto, calling for greater public awareness of their condition and demanding that it be included in the Long Term Illness scheme. Inflammatory bowel disease (IBD) includes conditions such as Crohn’s disease and ulcerative colitis – chronic auto-immune illnesses that affect an estimated 15,000 people in Ireland, and for which there is no known cause or cure.

Both Crohn’s disease and ulcerative colitis have similar symptoms, including abdominal pain, diarrhoea, fever, loss of appetite and weight loss. Suffers face the prospect of surgery or a life-long colostomy bag if their colon becomes too inflamed.

The manifesto demanded that IBD be recognised for the scheme in reflection of the fact that “both Crohn’s disease and ulcerative colitis are life-long conditions” and to “help relieve the financial burden on patients”.

Earlier this month, Minister for State Roisin Shorthall announced that the 56,000 people registered under of the scheme would be eligible for free GP care from March 2012, RTÉ reports.

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A spokesperson for the Department said that, while there were no plans to extend the list of conditions recognised under the programme, the terms of the scheme “will be reviewed in the context of the Government’s proposals for Universal Health Insurance and free GP care at the point of delivery”.

He added the scheme “pre-dated universal coverage against excessive drug costs” and that it had been “set up to provide protection for conditions considered at that time to be likely to have excessive drug costs, as there was very little other State support or protection against excessive medical costs”.

Currently, the Drugs Payment Scheme is open to non-medical card holders: under this scheme, no individual or family  unit  pays  more than  €120 per calendar month towards the cost of approved prescribed medicines.

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