Alistair Strathern backs NHS access to omaveloxolone after meeting constituent Constance Ahluwalia; families pay about £1,000 a day to get it privately now.

Families of people with Friedreich’s ataxia say a drug that could slow the condition costs around £1,000 a day if they buy it privately, because the NHS does not routinely offer it. Hitchin’s MP, Alistair Strathern, has now backed their call for omaveloxolone to be made available on the NHS, after meeting campaigners at Westminster, among them a constituent who lives with the condition.

Friedreich’s ataxia is a rare genetic condition that affects the nervous system, speech, mobility and the heart. It is thought to affect at least one in every 50,000 people, and people with it tend to have a shorter life expectancy than normal. The campaign puts the number living with it in the UK at 1,100.

Approved, but not routinely prescribed

Omaveloxolone, an oral prescription medicine sold under the brand name Skyclarys, is thought to slow the condition. The UK’s medicines regulator approved it in April 2025, but it is still not routinely available on the NHS. That leaves families who want it facing costs of around £1,000 a day, according to the MP’s office.

A petition calling for the drug to be made available on the NHS has passed 100,000 signatures.

A large group of campaigners, several in wheelchairs, gathered in Parliament Square beneath the Churchill statue, holding placards reading Skyclarys Access Now, Stop the Delay, Don't Take My Future and Time Is Running Out
Campaigners with Friedreich's ataxia and their families in Parliament Square, with placards calling for access to Skyclarys. Photo: supplied by the office of Alistair Strathern MP

A letter to Downing Street

On Tuesday 13 October, people living with the condition and their families gathered in Parliament Square. Brogan Johnson, a 17-year-old who has Friedreich’s ataxia, then delivered an open letter to Downing Street. It calls on Andy Burnham to help the 1,100 people in the UK living with the life-limiting condition.

Mr Strathern met the campaigners and spoke to Constance Ahluwalia, one of his constituents, who has Friedreich’s ataxia. Constance and her family explained why access to omaveloxolone could change life for people with the condition. She is pictured with the MP and with Jake, who also has Friedreich’s ataxia, in front of placards reading “Don’t take my future” and “FA doesn’t wait, neither should access”.

“A fair chance to benefit”

Mr Strathern said: “Meeting Constance and other families affected by Friedreich’s ataxia was a powerful reminder of why this campaign matters so much. Their courage and determination are inspiring.

“For the 1,100 people living with the condition across the UK, and their loved ones, access to Omaveloxolone could make a real difference to their quality of life.

“It’s only right that people have a fair chance to benefit from treatments that have the potential to slow this devastating condition.”

Mr Strathern sends a regular update to constituents, which can be signed up for on his website.