Time For Action!

I have been waiting for people with Friedreich’s Ataxia to have a cause to fight for! I blogged about the first treatment available for our condition and how it is not being made available in the UK at the end of 2025. Since then, the FA community in the UK has stepped up to challenge this!

The 20th century in Europe was filled with conflict, protest and revolution. I studied this period of history at University. It wasn’t until the Civil Rights protests of the 60s in America that disabled people, following the examples of other oppressed groups such as women and black people, began to change their world.

Here in the UK, the Disability Action Network (DAN) played a huge part in ushering in the Disability Discrimination Act of 1995. This ground-breaking legislation finally placed a Legal Duty on service providers to uphold equality for disabled people. A key DAN tactic was to use direct action. Then Barbara met Alan is a touching BBC documentary about this time. Disabled people took to the streets, chaining themselves to buses and public buildings to demand equality. My book, Disability Is Other People: My Superhero Story, looks at the disability movement in the UK.

I went to university in 2000 with the feeling that society wanted to support me as a disabled person to have a full life. I used Access To Work throughout my career, paid off my student loan and paid taxes until I retired. Throughout, and still, I feel the deepest gratitude to those campaigners who put their personal safety on the line to change society for the better. I wanted to live up to their example and give something back if I possibly could.

When I retired in 2011, I began my close association with Ataxia UK. A Trustee for eight years, co-chair for the last two, and proud Ambassador since 2018. During these 15 years, austerity has cut services and life for disabled people has got more difficult, but there has never been an issue that directly affects only those with FA ataxia. Until now.

Biogen have bought the first treatment for FA to the global market, but at $370,000 per person per year, Skyclarys is ludicrously expensive. Some in the market can not pay for it in good faith and are cast as villains. In their quest for profit, Biogen have generated a huge amount of hope and frustration within the FA community. It’s an explosive mix.

Skyclarys is not the hill I am prepared to die on. In my opinion, it is grossly overpriced (if the current UK population with FA were prescribed it, it would cost an unsustainable $360,000,000 per year! Its impact is also overinflated; but it has drawn our community together. For the first time, people with FA in the UK are facing discrimination as a single group. We are being denied a treatment that is available to others around the world. That must be challenged. Our community, although estimated at somewhere between 1,100 and 1,200 people, has responded handsomely.

A parliamentary petition and two open letters have emerged and I have put my name to all of them. I encourage you to sign and share them all too (links below). I believe that the more there are, the greater the awareness raised of our condition. Ataxia UK is doing valuable work building a consensus amongst the NHS, key MPs and government departments, centred on an open letter to the Prime Minister.

I was excited to contribute to one open letter in particular. It is addressed to the NHS, NICE and Biogen, clearly indicating that all three have a responsibility for the issue, and a role to play in its solution. In it, a couple of lines of text are recorded by different people with FA. It is the closest we have to being seen and listened to as a group of individuals on a public platform so far. Well done to Ren Brown (no relation!) for organising it!

Our comrades in Ireland faced the same issue. Despite having a much smaller community (an estimated 200 people with FA) a robust media campaign was followed by a well-timed protest march through the streets of Dublin. This caught my attention especially. At last, people with FA were taking to the streets! Two days later, on August 25, 2026, the Health Service Executive (HSE) in Ireland approved the reimbursement of Skyclarys for the treatment of Friedreich’s ataxia. This has given a boost to the campaign in the UK.

I know that just like me, our community wants to make a far-reaching statement as only people directly affected by discrimination can. We want to be seen and heard. I believe we should be pushing against the pharmaceutical companies that hold people to ransom for their super-expensive drugs. But we’re just getting started, maybe that will come later. Now, it is time for action!

• Sign Ataxia UK’s Open Letter asking for urgent access to omav
• Sign the Petition to Fund NHS access to Omaveloxolone for patients with FA

Richard C Brown MBE – September 2026