The women from Bromsgrove, alongside other sufferers, are taking a petition to Downing Street, asking for the National Institute for Health and Care Excellence (NICE) to re-evaluate the treatment under its highly specialised technology committee for extremely rare conditions.
“We need 100,000 signatures for this to even be discussed in parliament,” explained Charlotte who, like Olivia, is a mum of two.
“This medication can’t cure Freidreich’s Ataxia, but it can slow down the progression… and I believe we all should have the chance to take it.”
FA is thought to affect 1,100 people in the UK and symptoms include vision impairment, hearing loss, slurred speech, aggressive scoliosis (curvature of the spine), diabetes, and serious heart conditions.
The medication, which has the brand name Skyclarys, has been shown to offer a 54% chance of slowing the progression of the disease, but at almost £300,000 per patient per year, would normally be too expensive to prescribe on the NHS.
Although the drug, which is manufactured by biotech company Biogen, is available in the US and some European health care systems, current NICE guidelines cap treatment spend in England at £30,000 per patient per year.