A LICHFIELD family is taking the battle to get treatment for people living with a rare and incurable genetic condition to Downing Street.
Lucy Evans is campaigning on behalf of her husband Mike for increased access to medication to help slow down the symptoms of Friedreich's ataxia.
The condition causes progressive damage to the nervous system and a loss of coordination.
But despite being licensed in the UK and funded in a number of European countries, Skyclarys is not routinely available on the NHS.
Now Lucy and other families are heading to Downing Street on 13th October to hand over a letter to the Prime Minister highlighting the urgent need for those living with Friedreich's ataxia to have access to the medication.
She said:
"Friedreich’s ataxia is a rare and progressive condition that has already had a huge impact on his mobility, balance and speech, as well as on our family life.
"Mike is just 33. He is my husband and a dad to two little girls, but he is living with a condition that is progressively taking away his independence.
"Watching that happen while knowing that there is a treatment specifically licensed for Friedreich's ataxia is incredibly difficult for our family.
"We are doing everything we can to secure access to a treatment that could potentially make a meaningful difference to his future.
"But this is no longer just about our family. There are people across the UK living with Friedreich’s ataxia who are waiting for access to treatment, and we want to make sure their voices are heard.
"We have been overwhelmed by the support we have received from our local community, but we now want to take that message directly to Westminster.
"This is not a situation where there is simply no treatment available. The treatment exists and it is licensed in the UK – and it is being provided to patients in other countries. But patients in England currently cannot access it routinely through the NHS."
Lucy said the delays with making the medication available through the National Institute for Health and Care Excellence (NICE) approval process were leaving families such as hers in limbo.
"For families like ours, every month matters. Friedreich’s ataxia is progressive. We cannot simply press pause while decisions are being made.
"Behind the statistics are real people and families. For us, this isn't simply about a drug or a policy decision, it is about Mike's future, his independence, his ability to be there for our children and having the opportunity to try a treatment that is already licensed specifically for the condition he lives with."
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