HSE change of heart gives Galway MS patients new lease of life
The HSE’s about-turn to belatedly cover the cost of a superdrug for Multiple Sclerosis sufferers has been described by the Galway woman who led the fight for funding as ‘life-changing on every front’.
Rosaleen Rafter from Killeeneen, outside Kilcolgan – whose plight was covered extensively in the Connacht Tribune – was thrilled at the news that the HSE will now include Fampyra on its list of reimbursable drugs
“I’m fantastic, fantastic! The next time you’ll see me I’ll have put on weight because I’ll be able to eat everything I want,” she joked this week.
But the reality of life for the 61 year old mother of two having to cough up €275 every month for Fampyra has been stark. “I’d always have to put off paying some bill or other. I haven’t gone anywhere for the last year. The only place I went was to the Cheshire Home for physio and my art class.
“I had to watch what petrol I was using so I couldn’t drive too far; before that I’d travel to Gort or Loughrea. I never bought myself something, goodies or a bar of chocolate. I just had to cut whatever I could.”
That all comes to an end with the announcement last week from the HSE that, after protracted negotiations with the manufacturer, Biogen, it will include Fampyra on its list of reimbursable drugs for the long-term illness scheme.
Fampyra helps MS sufferers to lead an independent life. With it, Rosaleen can manage without a wheelchair and is not forced to go into a home; she can walk with the help of a rollator, manage longer distances without having to rest, and maintain good balance.
She received the drug for free for two-and-a-half years as part of a clinical trial but that ended in June 2014 when it was licensed. When the National Centre for Pharmaco-economics (NCPE) found that it was not cost-effective at nearly €7,000 a patient each year, she was faced with a massive monthly bill.
Her chemist kindly offered to provide it at cost price but even that proved a big mountain to climb while living on a pension from the administration job she had to take early retirement from in NUIG when diagnosed with MS in 2003.
When she gave it up due to the cost, she noticed almost immediately that her mobility was badly affected. She knows of at least four Galway people – out of the estimated 400 MS sufferers in the county – whose lives have been severely curtailed as a result of having to forego Fampyra.
See full story in this week’s Connacht Tribune.