Uncertainty about funding for a new drug for people with multiple sclerosis (MS) has led to inequitable treatment and the waste of already scarce hospital beds, it has been claimed.
And while the National Centre for Pharmacoeconomics (NCPE) has said treatment with the drug Tysabri (natalizumab) is cost effective, neither the Department of Health nor the Health Service Executive (HSE) can guarantee that funding for the drug will be readily available to all patients for whom it is prescribed.
Tysabri is an innovative medication for the treatment of patients with the relapsing/remit-ting form of MS.
Costing in the region of €20,000 per patient, per year, the new drug has been shown to reduce the risk of disability progression by 42 per cent over two years.
The intravenous drug is given on a day-patient basis in hospitals.
Dr Michael Barry, director of the NCPE and a consultant clinical pharmacologist at St James's Hospital in Dublin, said: "The NCPE considers Tysabri borderline cost effective in the Irish healthcare setting but recommends reimbursement on the basis that Tysabri does appear to be cost effective from a societal perspective."
However, Dr Barry said that consultant neurologists had told the NCPE that some hospitals were funding the cost of treatment while others were not.
"Even in the same hospital some MS patients were receiving the drug while some were not. The issue is one of equality as well as cost effectiveness."
Anne Winslow, chief executive of MS Ireland, said the society was concerned that both the funding and the facilities for administering Tysabri were a problem.
"We would like the Department of Health to make funds available in a timely and equitable manner, so that all Irish patients can receive the most appropriate medication for them, irrespective of their address," she said.
Kevin Doyle from Gorey, Co Wexford, has told MS News (the society's newsletter) of the difficulties he had in securing funding for treatment with Tysabri.
While an inpatient at St James's Hospital last November, his neurologist prescribed the new treatment but he was subsequently told that there was a problem with the HSE providing funding.
After contacting his local TD, John Browne, Minister of State in the Department of Communication, Marine and Natural Resources, from his hospital bed, the Minister later phoned back to tell him that funding had now been secured.
"I spent basically two and a half weeks in hospital just waiting to start [ treatment]. It was a terrible waste of a bed . . . It is a sad day when we have to call on our politicians to obtain treatment for us which is a basic human right," Mr Doyle said.
A Department of Health spokeswoman told The Irish Times that the supply of Tysabri was a matter for the HSE and the hospitals.
A HSE spokeswoman said: "Tysabri is a hospital-prescribed drug. With any hospital-prescribed drug the decision to use the drug as treatment is made by the relevant clinician. This decision is made based on a range of criteria and policy may vary from hospital to hospital."
Tysabri was developed by the Irish pharmaceutical company, Élan, and is manufactured by Biogen Ltd.
Its side effects include the development of a rare but fatal neurological condition called progressive multifocal leukoencephalopathy (PML).
Concerns about PML led to the withdrawal of Tysabri from the market in 2005, but the cases of PML were subsequently linked to its administration in combination with another drug.
MS affects about 7,000 people in the Republic. It usually begins at 20-40 years of age and is more common in women.
Most people in the early stages of the disease have periods of relatively good health (remissions) alternating with debilitating flare-ups (relapses).
About half of people with MS go on to develop a progressive form of the condition while a smaller number experience a steady deterioration in function from the time of diagnosis.