HSE refusing to pay for new MS wonder drug
MULTIPLE sclerosis sufferer Doris Roben threw away the leg splint she had worn for 20 years when she was treated with a new wonder drug.
"After two weeks I felt much better and I could spring along," Doris told the Sunday Independent.
"I wore a splint on my leg for 20 years and since I started on the Fampyra I have been able to take that off. I can walk further, I can walk faster and I'm steadier."
But now the life-changing treatment may be snatched from her hands as the pharmaceutical giant that makes Fampyra and the HSE go to war over how much the drug should cost.
Doris is not the only MS patient caught in the crossfire as the HSE refuses point blank to pay the asking price for a new drug which has helped many Irish MS patients.
If the row is not resolved, patients will have to pay up to €400 a month for the treatment – cash that 70-year-old Doris simply does not have.
Fampridine – known as 'Fampyra' – 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, now that the drug has been licensed in Ireland, Biogen Idec will no longer provide the drug for free to those who took part in the trial. And because of the row over how much the drug could cost, the HSE is refusing to provide it.
According to a HSE spokesperson, Fampyra is not currently provided to MS patients under the long-term illness scheme because the drugs company and the HSE have not yet been able to agree on a price.
"Biogen Idec failed to demonstrate or provide any formal justification of the prices proposed. In May 2013, the HSE decided that it could not approve the reimbursement of Fampridine under the GMS or other schemes. Biogen Idec was formally notified of this decision," the spokesperson said.
In response to whether the company would consider lowering the price of the drug, a spokesperson for Biogen Idec said: "We are currently working with Irish authorities to make Fampyra available to all patients there. We will continue to make Fampyra privately available during our discussions with the HSE."
Doris was diagnosed with multiple sclerosis 23 years ago, but within weeks of taking Fampyra for the first time in January 2013 she experienced a huge improvement.
"When you get diagnosed with MS, it is a terrible shock," Doris added. "It's like a death sentence. You see the worst-case scenario, the wheelchair just around the corner. There was nothing available when I was diagnosed."
A year after Doris's diagnosis a drug called Interferon was developed, which she took for 20 years, injecting it every second day.
"It's strange because the Interferon was far more expensive, it was €1,200 a month," Doris said. "It was also very hard going, getting injected all the time. So when I was told I could stop it and try something new I thought, 'wonderful!'
"Fampyra is hope to people with MS and that's the one thing I didn't have for 20 years. I was just very gradually getting worse, but then all of a sudden hope and it's all going the other way – you're actually getting a bit better, but now that hope is dashed."
Doris and MS sufferers like her, who responded positively to the drug throughout the programme, are now faced with a bill of anything between €225 and €400 a month to pay for the drug.
"Unless you are a millionaire, nobody has €300 every month. Okay, we'll scrape it together if necessary," Doris said. "But there are many others who won't be able to."
"It means I can walk without clinging to things," she said. "So I'm really anxious that I would get it and I will certainly pay for it for the first while if I can at all, from savings or whatever we can, but my husband and I are retired, our income is going down like everyone else and it seems a bit cruel to have to pay for it."
Doris has made numerous appeals to her local politicians for help, including the Health Minister Dr James Reilly, who replied to a letter she wrote, saying that it had been decided that Fampyra wasn't value for money.
"I've been saying for years someday someone will come up with something and my son has always said to me, 'Don't worry, Mum, there is so much research into it that they'll hit the jackpot sooner or later' – and this is the jackpot as far as I'm concerned," Doris explained.
As of July 1, Fampyra will only be available to MS patients in Ireland at a personal cost. However, many pharmacists are now backing MS Ireland's request for the HSE to cover these costs.
"McCabes Pharmacy are bitterly disappointed to see the HSE are unwilling to reimburse Fampyra on the various HSE drug schemes," Pharmacist Ciara McCabe told the Sunday Independent.
"This decision is putting a lot of stress on our patients who have benefited from the medicine to date. MS patients have told us that Fampyra has made a significant impact on their lives.
"With immediate effect, McCabes Pharmacy are reducing their dispensing fees on this drug to make this medicine as affordable as possible for our patients going forward."
There are an estimated 8,000 people with MS in Ireland, making it the most common disabling neurological condition in the country. There is no known cause or cure for MS.
According to independent research, only 32pc of people living with MS in Ireland are receiving treatment for their disease.