HSE and Pharma Lobby Delay Another Lifesaving Drug
The HSE, stuck price haggling with a multinational pharmaceutical lobby consuming taxpayer money, declines to reimburse the only medication for a rare chronic disease.
After questioning the Minister for Health, Ken O’Flynn TD has recently received HSE confirmation that the market-protected drug Skyclarys will not yet be up for reimbursement. Skyclarys is the only approved medication for the chronic disease Friedrich’s ataxia, and has the capacity to slow the progression of this illness – which can cause scoliosis, loss of the senses, and fatal heart issues – by up to 55%.
Skyclarys is owned by Biogen, a pharmaceutical giant that is a member of the Irish Pharmaceutical Healthcare Association (IPHA), a lobby group that negotiates with the HSE in order to get the highest possible price for their drugs. The research & development costs for these drugs are often subsidised by Irish taxpayer money. The IPHA’s insistence on outsized profits often leads to huge delays in life-saving medications like Skyclarys being made available to those who need them most.
While significant collective work is needed to dismantle the power of such lobby groups, we have no reason to be sullen about our chances, as the Irish public has already displayed a remarkable ability to fight on behalf of the chronically ill. In 2025, popular outrage successfully pressured the HSE into approving Carbaglu – a medication owned by the non-IPHA corporation Recordati – for a Westmeath baby with a rare metabolic disorder.
The Carbaglu and Skyclarys stories were both pushed by Right-wing actors – Gript and an Independent Ireland politician, respectively. It is the New Left, of which Aontacht is part, that should think to join them in amplifying such issues.
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