This Sunday will see another protest on O’Connell Street, with campaigners, patients and families affected by Friedreich’s Ataxia marching from the Garden of Remembrance to Custom House Quay starting at 12pm.
The reason for the protest is that the HSE Drugs Group have decided not to recommend reimbursement for a drug treatment for Friedreich’s Ataxia called Skyclarys, essentially denying the roughly 200 people in this country with the condition this licenced drug treatment.
The reason given by the HSE is cost-effectiveness. Skyclarys is expensive. The HSE drugs group cited a figure of €280,000 per year per patient with a total cost to the exchequer of €56 million a year. This figure has been disputed however by Biogen’s UK and Ireland head of medical affairs, Samantha Dixon, who stated that the numbers quoted by the HSE are not ‘reflective of the offer Biogen has submitted’.
The HSE Drugs group point to a review by the National Centre for Pharmacoeconomics (NCPE) that led to their decision. Professor Michael Barry is the clinical director of NCPE which conducts the pharmacoeconomic evaluation of medicines in Ireland. As a pharmacist, I attended a talk of his, many years ago, where he presented us with an exercise where we were to decide which of four very expensive medicines for unusual or rare illnesses we would hypothetically back for reimbursement by the exchequer. I cannot recall if there was a right answer or not but understood the point of the exercise was to demonstrate the challenge NCPE has in reviewing applications for the reimbursement of novel medicines.
Of course, the NCPE doesn’t have a say in all exchequer funded medicines. The Covid -19 vaccines, for example, and drug treatments like Paxlovid and Remdesivir, were handled by purchase agreements and procurement contracts handled largely by the European Commission and the Health Emergency Preparedness and Response Authority, despite being novel treatments. Indeed controversially, much of the detail of the size and cost of these contracts with pharmaceutical manufacturers was redacted when MEPs requested access to information on those decisions. The decisions to fund Ireland’s Free Contraceptive Service and free HRT medications were Government decisions and not deliberated on by the NCPE for ‘cost-effectiveness’.
If I could go back to that lecture and give my opinion on whether we should reimburse Skyclarys,I would defend my position in support of this medication on the following grounds:
Firstly, there is no other licensed treatment for Fredreich’s Ataxia. This is therefore the best yet.
Secondly, it has been licensed by the European Medicines Agency following a review of its safety and efficacy. (This is a more onerous process for medicines than for vaccines).
Thirdly, the figures given by the HSE, if correct, are the maximum it would cost as the medicine will not suit every patient. Some will have adverse effects and discontinue, others will not achieve any improvement, and will stop taking the medicine.
Fourthly, much new and useful information will be learned from the use of this drug that will go on to help develop a better treatment. This patient cohort is prepared to trial this new treatment.
Finally, can the cost of this treatment be found elsewhere in government coffers? We don’t know, but a multitude of great ideas have been put forward on social media as to where the money could come from. We have approximately €60 million of public money in unclaimed deposits in the Re-turn Deposit Return Scheme annually – with at least €120 million in the bag so fare. That’s an option. And surely our Taoiseach won’t be gifting €125m to the Ukrainian President every year?
The Government could decide to purchase less Covid vaccines in the future to reduce the waste now totalling €100 millions of unused Covid-19 and seasonal vaccines since 2021. And perhaps the Free Contraceptive scheme costing over €40 million annually could be paused since recipients of that scheme have no illness, have access to inexpensive medical preparations and are often too well off to avail of the medical card, in contrast to those unfortunate enough to suffer this rare and progressive disorder without a cure.
Our priorities should be with those most in need.
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MAIRÉAD TÓIBÍN