THE HSE has been accused of “pulling the carpet from under the feet” of a Doonbeg Multiple Sclerosis (MS) sufferer, following the withdrawal of a free drug.
Angela Fitzpatrick has also questioned why the HSE didn’t make the necessary arrangements to pay for an alternative drug before it decided to withdraw the reimbursement of Fampridine from her husband, Nick, under the GMS and other schemes from July 1 next.
Nick, who was diagnosed with MS 12 years ago, at the age of 48, has been taking Fampridine, otherwise known as Famprya, for the last 18 months.
“It was a huge shock to us when our pharmacist informed us the drug would be withdrawn and, if we wanted it, we would have to pay between €300 and €500 a month, which isn’t viable for us and other MS sufferers who are on a limited income.
“It is scary because his body has got used to this drug now. It would have been kinder not to have given it to him at all. If he forgets to take the drug, the next day he is like a wilting lilly.
“I am afraid he will regress a lot if he can’t get this drug. We are only ordinary people who don’t go around looking for the spotlight but only want to be heard.
“The whole uncertainty is causing a lot of anxiety,” she said. Following the intervention of their pharmacist, Malone’s Pharmacy in Kilrush, this drug will remain free until September 1.
She confirmed that representations have been made by Deputy Pat Breen, Timmy Dooley and Councillor Gabriel Keating.
While the couple were in England, Nick used to work as a sub-contractor for a haulage contractor before he was forced to give it up for health reasons five years ago.
The couple were delighted to return to West Clare, where they have strong links, particularly with Clohanes, the homestead of Angela’s late uncle, John O’Gorman.
While Angela doesn’t believe Famprya is a “miracle drug”, she says it helps her husband to walk better, giving more confidence and more independence.
As a full-time carer, she explains that she never leaves her husband on his own for too long, just in case he gets into some unexpected difficulty. Their son, Kieran, is completing a History PHD in Oxford University.
Famprya was given free of charge, to Irish MS sufferers on referral from their doctors during the last two and a half years, as part of a Name Patient Programme initiated by drugs company, Biogen Idec.
However, since the drug was licensed in Ireland, Biogen Idec will no longer provide the drug for free to those who took part in the programme.
The HSE is refusing to reimburse the cost of this drug over a dispute about how much it could cost. There are 480 MS sufferers in the Mid-West, of which 153 reside in Clare.
The pharmaco-economic group that advises the HSE on funding of drugs have said there is not enough evidence to show that a sufficient percentage of people using the drug are benefiting, therefore the HSE do not intend to fund Fampyra.
While MS community worker, John McDonald says the MS society doesn’t have exact numbers, he notes there is a lot of anectodal evidence to show that a large amount of people with MS in Ireland are benefiting greatly from Fampyra.
“When funding is withdrawn, quality of life will be severely affected and the knock-on effect will mean greater pressure on HSE resources from them as their condition worsens in probably a short period of time,” he said.
Angela hopes the national review body will take another look at this issue by examining the latest up-to-date information.
Deputy Breen acknowledged the drug is proving very successful for about a third of the approximately 7,000 MS sufferers in the country.
“I understand that following a review by the National Centre for Pharmacoeconomics, NCPE, it transpired that the HSE would no longer provide the drug under the GMS, he said.
He said on Wednesday, a new application has been lodged by Biogen, who have reapplied for inclusion in the Community Drugs Scheme, which is very good news for MS sufferers.
He has been assured by Health Ministe,r James Reilly that this new application will be considered “in line with the agreed procedures and timescales for the assessment of new medicines”, and he has asked the minister to request the HSE to fast track it.
“Whatever issues need to be addressed between the manufacturer and the HSE, should not prevent MS sufferers from accessing this drug.
“While this new application is being assessed, Biogen should continue to make this drug available, free of charge, to these patients.
“I’m aware of Nick’s situation and his circumstances are reflected throughout the country for people with MS who use and rely on Fampyra to enable them to maintain mobility and keep a certain level of quality of life,” he added.