Dáil Éireann Debate, Thursday - 3 April 2014
260. Deputy Clare Daly asked the Minister for Health if he will undertake a series of initiatives to raise awareness about Ehlers-Danlos syndrome, ensuring sufferers have access to the treatment abroad scheme and to recognise it as a long term illness. [15868/14]
Amharc ar fhreagraMy Department is finalising a national plan on rare diseases which is set in the context of the European Council’s recommendation of 8th June 2009. While no specific rare disease is mentioned, the council’s decision declared that it is estimated that there are between 5,000 and 8,000 rare diseases; and it states that the specificities of rare diseases are: a limited number of patients and; a scarcity of relevant knowledge and expertise. The Council’s decision recognised these specificities when it recommended that member states adopt a plan to guide actions in the general field of rare diseases. It is with this in mind that my Department is finalising a generic plan to apply to the 8,000 rare diseases estimated to exist, including Ehlers Danlos Syndrome.
With respect to access to the Treatment Abroad Scheme (TAS), the HSE processes applications on the basis that the treatment which the patient is being referred for is not available in Ireland. The presence of a rare illness, such as Ehlers Danlos Syndrome, is not of itself criteria for availing of treatment abroad: most rare diseases are treated without any need for recourse to services in other jurisdictions. All patients in conjunction with their Irish based public referring hospital consultant have the ability to apply to the HSE TAS seeking access to public healthcare outside the state. Applications to the TAS are processed and a determination given in accordance with the statutory framework prior to a patient travelling to avail of treatment. Approved applicants/patients’ hospital treatment costs are covered through the issue of form E112 (IE) for the specific identified episode of care. Once a patient is discharged from a specific episode of care abroad their care immediately reverts to their Irish based consultant
Each application to the HSE TAS is reviewed individually on its own merits and there are no restrictions on a person making an application to the HSE TAS for review and decision. Previous approvals or declines are not used as an influencing factor on subsequent applications. Each application is for an individual episode of care unless otherwise specified by the consultant on the application form. It is not possible to give a “blanket” statement on applications to TAS for patients with a particular condition. As outlined above each application is reviewed individually based on the referral for treatment that is not available in Ireland.
The Long Term Illness (LTI) Scheme was established under Section 59(3) of the Health Act, 1970 (as amended). Regulations were made in 1971, 1973 and 1975 specifying the conditions covered by the Long Term Illness Scheme. The conditions covered by the Long Term Illness Scheme are as follows: Acute Leukaemia; Mental handicap; Cerebral Palsy; Mental Illness (in a person under 16); Cystic Fibrosis; Multiple Sclerosis; Diabetes Insipidus; Muscular Dystrophies; Diabetes Mellitus; Parkinsonism; Epilepsy; Phenylketonuria; Haemophilia; Spina Bifida; Hydrocephalus; and conditions arising from the use of Thalidomide. There are no plans to extend the list of conditions covered by the Long Term Illness scheme.
