We don’t often hear much about orphan drugs in the media, but they have come up recently in the context of the relatively new medication, Skyclarys.
Skyclarys is a treatment for a condition known as Friedrich’s Ataxia (FA). FA is an inherited neurodegenerative disorder, which involves progressive nervous system damage, leading to a good deal of neurological and motor symptoms like loss of sensation, diminished reflexes, muscle weakness, as well as possible heart problems. It’s progressive, so it gets worse with time leading to reduced capacity to function and so to a loss of independence in daily activities – including problems with speech and swallowing, with an attendant risk of choking. Typical early onset FA is associated with life expectancy of 35 to 40. In short, FA is progressive, brutal, and scary.
Skyclarys can’t cure FA, but it can slow the process at the cellular level – a new advance which can extend independent living time. This is a development that can mean the world to people with the condition and for their loved ones.
A cause for celebration then. But, under capitalism, the celebration is perhaps for those who stand to profit more than for those who can benefit from the drug. The estimated annual cost for a single person’s treatment is €280,000 or more per year. The HSE Drugs Group in the south of Ireland has recommended against it being reimbursed for patients as it would not be a cost-effective use of resources. The company, Biogen, which produces Skyclarys and holds the patent may be approached for negotiation.
In the capitalist world, both groups have their logic.
The HSE Drugs Group approaches the question on the basis of resources available to the HSE. There is a health budget; spending this money on Skyclarys means it’s not available to spend on other medications; this is not the way to maximize societal benefits from the budget available.
The government will say that they have a certain amount of money to disburse to cover all costs of state; they can’t afford to give more to an already expensive health care system.
Biogen, the pharma giant, will point to the great expense involved in research and development for Skyclarys and other drugs, and the need to recoup that and to make the whole process profitable as an incentive.
And under capitalism, all of these arguments make sense.
And under capitalism, the fact that humans lives are at stake, precious quality of life, independence, possibilities, happiness, hope – these don’t count in the marketplace.
But step back and don’t assume capitalism is without an alternative.
Biogen booked profits are $1.29 billion in 2025 and $8.69 billion over the last five years. It has a market capitalization of over $30 billion. They can’t justify the poor mouth. This is a serious player in pharma and it has a huge income. But it’s nothing compared to the size of profits of giants like Eli Lilly or Johnson & Johnson. The top five pharma companies made $77.7 billion in profit in 2025[5].
Just how much ‘incentive’ is needed? Leaving aside the fortunes spent on researching anti-aging creams etc., on marketing, on perks and salaries for senior management, and focusing only on profits, imagine what could be done in terms of research on really serious conditions or making medications available to people with rare conditions like FA with $77.7 billion. Why is this profit more important than human life, dignity, well-being?
The government pleads inability to pay. But they also say Ireland is one of the world’s wealthiest countries with robust economic growth. It’s clearly profitable for private companies, and the government prioritizes their profits over properly funding services such as healthcare. The Irish government will plead that taxing business means that they will move elsewhere, but the same government – so intent on restricting movement of humans – insists on freedom for money to travel. This insane system means private companies hold the power. They can jump from country to country and different governments compete to be the cheapest host.
If you were designing a world from scratch, this isn’t what you propose unless you are deranged and/or a psychopath.
What of a country where private interests don’t dominate essential industry and services. Where the resources produced are used for the well-being of human beings. Where research in healthcare is directed where it’s most needed and not where it is potentially most profitable. Where every effort is made to maximize human dignity and well-being and to fight illness and despair. Such a society would strive to provide treatment to human beings with FA and other rare conditions as well as to everyone else who needed it.
It’s not a fantasy or a pipe dream, it’s realistic and attainable. It’s Socialism, international and with a global socialised healthcare system. We fight for this end so that humans can live as full lives as possible.
