Backing campaign for life-changing drug to be available on the NHS

Alistair Strathern, MP for Hitchin, is backing calls for a life-changing drug to be made available on the NHS after meeting campaigners in Parliament. Patients with Friedreich's ataxia want Omaveloxolone to be made available. 

Friedreich's ataxia is a rare genetic condition which affects the nervous system, speech, mobility and the heart. It is thought to affect at least one in every 50,000 people. People with the condition tend to have a shorter life expectancy than normal. 

Although approved by the UK's medicines regulator in April 2025, Omaveloxolone is not routinely available on the NHS, leaving many families facing costs of around £1,000 per day to access it privately. The prescription oral medication, which is branded as Skyclarys, is thought to slow the condition.

A petition calling for Omaveloxolone to be made available on the NHS has already attracted 100,000 signatures. 

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

Alistair met 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 be life-changing for people living with the condition.

Alistair Strathern MP 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."