I’m not a public figure, I don’t write open letters. But this time, something is happening in the tiny part of our world in which I have some knowledge of and may have a little influence over. Since 2019, I have blogged about the development, troubled release and most recently, the impact of this struggle on our community of Skyclarys – the first effective treatment for my condition. The problem is that despite being easily available in other countries, the drug remains unavailable to the estimated 1100 people in the UK who could benefit from it. There is an impasse, the elephant-in-the-room is the eyewatering cost. Here is my letter to Christopher A Viehbacher, CEO of Biogen urging him to reconsider the price of Skyclarys. If I receive a reply, I will post it below.
Sent via email on 31/10/26
Dear Chris,
I am a prominent member of the Friedreich’s Ataxia (FA) community in the UK and am writing to urge you to take action on the availability of Skyclarys here. I am writing on my own behalf, but will be sharing this letter and your response with the FA community and the wider public through social media. While I am very thankful that Biogen has invested in the first treatment for FA, Biogen’s approach to making this drug available has created a storm that is really hurting people with FA and their families.
The problem: Skyclarys simply costs too much. When Biogen bought the developer of Omaveloxolone, Reata, for $7.3Bn in 2023 they overpaid for it. By trying to recover this investment in too short a term, Biogen has set far too high a price for a drug with largely unproven effects. It was introduced of to global markets at the eyewatering price of $370,000 per person, per year; more than 10 times the price that National Institute for Health and Care Excellence (NICE) is prepared to pay for life-enhancing drugs in the UK. In May 2025, Biogen simply abandoned negotiations with NICE to supply Skyclarys in the UK.
The effects:
• Creating misery in our community: After years of seeing friends and family losing their abilities and dying before their time, the arrival of Skyclarys naturally provoked huge excitement. The failure to distribute the drug in the UK has led to an outpouring of the most heart-breaking feelings amongst our community. Instead of focusing on the present where we can find ways to live with the condition, many are now focused on the future they believe they are missing out on, a future that they feel Skyclarys promises. We feel totally abandoned. I fear that Biogen is using our moral outrage to strong-arm public health bodies and insurers around the world into paying for it.
• Unfairly raising expectations: Skyclarys was tested on a relatively small number of young people with FA. Despite being marketed widely by Biogen, there is no evidence for it being effective for adults or those at more advanced stages of the condition. It should be made clear that it is not the ‘magic bullet’ that it is being sold as.
• Creating discrimination: Depending on the country they live in, some people with FA are able to access Skyclarys with relative ease whilst those in other countries they cannot. This has opened our community up to direct discrimination on a global stage. I believe that Biogen is playing us all off against each other for profit and wonder if legal action is possible on our part.
The solution:
• Show some integrity: Biogen must take responsibility for its product, put its hands up and admit that its initial pricing for Skyclarys was incorrect.
• Lower the price of Skyclarys: Review its global marketing strategy for Skyclarys. Dropping at least two zeros from the asking price will place it in a very good position to be considered for distribution in the UK. This lower price will also enable easier access to it in other countries. I know Biogen is a business and has shareholders, but there is more than enough profit in a lower price. After all, this is people’s lives, their futures.
• Negotiate hard. Biogen and NICE must agree to the immediate reimbursement of Skyclarys through the NHS in the UK. I understand that Biogen intervened in Ireland to ease the access problems there. The FA community in the UK campaigned to submit a petition to ask our Government to debate the matter. This debate has been scheduled for 11 January 2027. This problem is not going away and Biogen has the power to resolve it.
You must intervene now to put people before profit. You must do the right thing here. You can still fix this. I look forward to your reply.
Sincerely,
Richard C Brown MBE
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