Paul Murphy: Urgent plea on Skyclarys, Givinostat and Big Pharma
Paul Murphy spoke in the Dáil to express solidarity with people and children suffering from rare diseases in Ireland and to call for urgent action on delayed orphan drugs. He criticised the pharmaceutical industry's priorities, welcomed the HSE Drugs Group recommendation on Givinostat and demanded swift approval and interim supports for families.
Solidarity with families
Paul Murphy opened by paying tribute to families who have had to go public with their stories to secure medicines. He emphasised the human cost of delays in approving orphan drugs and the need for dignity and support while families wait.
Critique of the pharmaceutical sector
Murphy argued that the sector is skewed by Big Pharma incentives, citing research that only about 25% of new medicines provide real therapeutic advancement. He criticised investment flowing into marketing and minor variations on existing drugs rather than prioritising rare-disease treatments.
Policy demands and immediate supports
He welcomed the HSE Drugs Group recommendation to approve Givinostat for Duchenne muscular dystrophy and asked that children not yet eligible receive interim supports such as splints to preserve muscle function while they wait for access.
Urgency on Skyclarys and orphan drugs
Murphy highlighted Friedreich's ataxia and Skyclarys noting the drug is approved by the EMA and available elsewhere. He quoted a constituent who condemned the delay - referencing an NCP verdict from 17 December 2025 and more than 570 days since the Irish application - and warned that the delay is costing patients time to slow progressive diseases.
Consequences and call for change
Murphy concluded by calling for a very different pharmaceutical system run in the public interest, pressing for faster HSE decisions on Skyclarys and other orphan drugs and for measures to protect patients while negotiations proceed.
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Thanks Ciann Comhairle. I want to start by expressing solidarity with those many people and many children who are suffering from rare diseases in Ireland and pay tribute to the very many who, them and their families, have to speak out publicly about what they're going through to bring pressure on the government to approve various medicines. And people like Archie Ennis, AJ Slevin, there's far far too many that we shouldn't have to know about their stories. And it speaks to something very very wrong in how our society is organised, how our economy is organised, how the pharmaceutical sector is organised. Fundamentally, you have Big Pharma, I was recently reading about research done in France, which says that the majority of new medicines developed offer no therapeutic benefit, no therapeutic advancement. Only about 25% represent a real therapeutic advancement. Because the vast majority of research is, money is now going into marketing, is going into research for products where there's massive markets already existing, and therefore just variations on drugs to keep patents ongoing. And then very little in terms of stuff like prioritising people's needs and rare diseases. And then when you do have developments, well then the pharmaceutical companies are holding out to get as much money as they possibly can for these. We need a very different sort of pharmaceutical sector run in public ownership and in the public interest. I welcome the decision of the HSE Drugs Group or the recommendation to approve Gevitostat for Duchenne muscular dystrophy. I want to just add a request that for children like AJ Slevin, who won't be of an age to benefit from it, because I think he needs to be six to benefit from it, but that the support is given in the meantime. For example, support from the HSE with splints to ensure that his muscles are not getting weaker while waiting for access. And obviously I hope that access is granted for everyone who needs it as soon as is possible. Then just briefly in relation to Friedrich's ataxia. We know that Skyclaris is the only drug which has been shown to slow the disease. We know it's been approved by the EMA. It's available in other European countries. I want to quote from a constituent. The NCP issued a harsh verdict for Skyclaris on 17 December 2025. While I understand that the HSE is still in discussions with the manufacturer, the delay is costing my niece time to slow this cruel disease. It is already heartbreaking watching her fade even though a drug that works exists but is out of reach. In the 570 plus days since the application for its use in Ireland was lodged, many in the community have lost the ability to stand upright, walk, feed or dress themselves and to speak clearly. Many have lost all hope. Time is ticking. We need urgent movement in terms of Skyclaris and in terms of the other orphan drugs that haven't been approved in our system. Thanks. For more UN videos visit www.un.org
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