'I spent £15,000 on MS drug to help me walk - now it's available on the NHS'
A life-changing drug that helps multiple sclerosis (MS) walk is finally being made available on the NHS in England. For those who have spent thousands buying fampridine privately, this decision is taking away a huge financial burden that forced one women to switch off her heating in order to afford treatment.
For years, Fiona Chapman faced with an impossible choice: pay almost £200 a month for the drug that helped her walk, or keep the heating on food in the cupboard. The 57-year-old mum-of-three, who lives with secondary progressive MS, has spent over £15m000 on a private prescription since being diagnosed in 2013.
Following the end of her marriage, the financial pressure became so severe that Fiona began rationing her tablets, taking just one a day instead of the prescribed two.
"I couldn't afford to have it every month, so decreased to one tablet a day so it lasted two months," Fiona said. "I wasn't getting the full benefit of it, but I had to balance quality of life against paying the gas bill. You shouldn't have to choose."
Fiona was diagnosed aged 43 after experiencing falls, numbness and dizziness. At the time she was working in a primary school and was worried about what the condition would mean for her busy family life.
Previously a keen cyclist, she first trialled fampridine in 2017 after a friend recommended it. It slashed the time she could walk ten-metres in from 14.5 seconds to just five.
Although her MS has since progressed, Fiona says the medication allowed her to keep working for her local council and playing in her brass band.
However, maintaining her mobility came at a huge cost, as she lived in her overdraft and steadily built up credit card debt, with the mum unable to afford heating and opting to keep the lights off at home.
"I've ended up with a lot of debt," she said. "I put a lot on credit cards, that I'm trying to get paid off." Now, she is waiting for her local NHS team to approve her free prescription, which will save her nearly £200 a month.
She is not alone in knowing what it's like to spend huge sums chasing anything that might make life with MS more manageable.
Up to 5,000 people in England could benefit each year from the treatment, which was previously rejected by the NHS on cost grounds despite being freely available in Scotland, Wales, and Northern Ireland. The new announcement brought a glimmer of hope to TV personality Jane Felstead, mother of Made In Chelsea star Binky Felstead.
Jane, 75, was diagnosed with MS around 10 years ago after decades of unexplained symptoms. She has spent her life savings and inheritance in pursuit of private treatments, travelling as far as Brazil to see a healer, before slowly losing her mobility.
"I'm very lucky. I managed to rent a nice flat in London, I can't afford to buy because of how expensive the treatment is that hasn't worked," Jane said.
She now relies on carers funded by Hammersmith and Fulham Council, as she is unable to drive or transfer herself from her chair, and needs help with basic tasks.
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