My name is Daniel Fraser and I have a condition called Friedreich’s ataxia (FA). It’s quite rare and most people have never heard of it, so let me explain. You’ve probably heard the expression, “as serious as a heart attack”. Friedreich’s ataxia is more serious than a heart attack. It’s a progressive neurological condition which typically affects balance, coordination and speech. It also affects my fine motor skills to the extent that typing this article is challenging and laborious. In the future, I could go deaf, I could go blind, I’ll most likely have to start using a wheelchair at some point, I could get diabetes, scoliosis, heart disease, I could suffer from chronic pain, chronic fatigue, loss of sensation in my arms and legs, and so on. I’ve been told that the best perspective is to find a balance between acceptance and hope. On that note, there is a treatment. It’s called omaveloxolone (omav), or the brand name “Skyclarys”. Its efficacy varies from person to person, but it’s safe and effective. It’s not a cure but it does slow the progression of FA. It would extend my life and help me to stay as active as possible for as long as possible. The catch is that it’s very expensive and, at the time that I’m writing this article, it’s not available in the UK. Omav was developed in the US. Part of the reason that it is so expensive is because of the extensive process in the US regarding regulatory approval. American health insurance companies also claim substantial amounts of money from the US government, which distorts market signals and allows the pharmaceutical companies to charge artificially high prices. There are three points which I think are noteworthy.
Firstly, there is a misconception that the US healthcare system is a free market. Even before the introduction of the affordable care act, the US government directly controlled at least 50% of the money in the US healthcare system. In the US, they have nominal private ownership paired with significant involvement from the state, and therefore, rather than free market capitalism, the US healthcare system is much closer to the traditional definition of economic facism. Secondly, I have been told since childhood how lucky I am to live in the UK where we have the NHS, which means that the poor don’t have to worry about having access to healthcare, rather than in the US. Ironically, if I lived in the US, I would most likely have access to the treatment which I desperately need. As it is, I do not, and the only reason for that is for the sake of money. Thirdly, this is a situation which, in a free market, could never happen. In a free market, there would be no point in developing a treatment for any health condition which almost no one could afford.
As a libertarian, I’m open to the idea that anyone who wants to be allowed to compete with the NHS. Realistically though, time is not on my side and I have to make the best of the situation that I’m in. I would argue that the best chance of having omav available on the NHS is to end wasteful spending. Let’s talk about the numbers. Omav would cost approximately £1,000 per patient, per day. In order for every FA patient in the UK to have access to omav would cost approximately £350 million pounds a year. I understand that that is a lot of money, especially since the national debt is well over £3 trillion. Here is what I don’t understand. In the past twelve months, the UK government has spent £3.5 billion housing illegal immigrants, £25 billion funding not one but two foreign wars. I think it’s also important to understand that in 2025, the UK government’s fourth largest expense, at £114 billion, was paying interest on the national debt. Not the debt itself, the interest. Why is it that these things I have mentioned are a higher priority than giving life saving medication to very ill people?
I’d like to end on a positive note. Technology moves fast these days and you never know what’s going to happen in the future. There are a lot of irons in the fire regarding treatments for FA. FA causes a deficiency in a particular protein called frataxin. There are potential gene therapies which aim to boost frataxin and theoretically ameliorate symptoms. There are also various clinical trials taking place all over the globe aimed at finding new ways to slow progression even further. It’s also possible that there may be a cure in my lifetime. The most recent health condition which people have developed a cure for is Hepatitis C(hep C). My late brother was a drug addict. He died in 2013. When he was alive, I was very worried about him for various reasons, one of which was that he was at risk of contracting hep C. At the time, hep C was a potentially very serious, life limiting disease. Now, in 2026, hep C can usually be cured in between two and three months with antiviral medication.
Daniel Fraser is a long-time libertarian activist, candidate, father and keeper of cats.
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