If sucking diesel were a cure for Friedreich’s ataxia then Leinster House would be Lourdes. The Dáil meets in special session on Friday to roll over subsidies on fossil fuels that have already cost an additional €1 billion this year. The political story this week, though, has been the row over Skyclarys, a new drug for Friedreich’s ataxia patients
In an act of previously unknown co-ordination the Fianna Fáil backbenches demanded the drug be provided by the taxpayer at any price
It was the equivalent of putting tractors on Dublin’s O’Connell Street and an outright attack on the public interest and on patients generally who depend on health spending
The asking price from the drug company Biogen was €280,000 per patient per year or a likely €130 million over five years if all eligible patients were treated. It wasn’t remotely cost-effective at that price, but the political bandwagon didn’t care. After all, it is somebody else’s money
In 2025 the asking price for new drugs was beaten back by the HSE from €499 million to €187 million. That is a reduction of €312 million or 62.5 per cent. Even in a country where billions of euro are squandered and the health budget is overrunning, €312 million is a lot of money if you care about patients’ health
I admire how Friedreich’s ataxia patients and their families fought their corner. A rare disease that afflicts about 200 people in Ireland, it is not only debilitating and shortens life expectancy, but is a condition for which no other approved treatment is available
Skyclarys, for over-16s, has the ability to slow the progression of the condition. This is welcome. Biogen, the manufacturer, sought to get the best reward for the risk of developing a new drug for a very small cohort
But, however imperfectly, it is the unloved HSE that represents the public interest. It was unforgivable that the public interest was being gratuitously shafted for the sake of political opportunism at the expense of patients generally, including those with Friedreich’s ataxia
What is clear is that the drug-approval process is vulnerable politically. It is too long and multilayered to survive a guerrilla attack from politicians in an age of social media. Their dividend is the publicity itself. The ultimate outcome is secondary and the financial cost is irrelevant
There is an obligation in law to make decisions within 180 days on applications for reimbursement of drugs. That seldom happens and didn’t in this case. If the fault is foot-dragging pharma companies then there is a clear case for dismissal of the claim for reimbursement. If the public interest is to be defended effectively then the process must be shorter and more focused
Making decisions on reimbursing drugs in the court of public opinion condemns patients to Animal Farm where “all animals are equal, but some animals are more equal than others”. It is nasty and incompetent politics
In the meantime the drug was approved this week for an unknown but lesser price. If this public showdown is a new normal, and it’s not unprecedented, it means things must change to stop decisions on medicines being made by force of public opinion. What is unprecedented is fragmenting politics and a nearly unanimous belief that there is a bottomless pit of public money
I use the word unanimous deliberately because I struggle to think of a single party or even one TD who will oppose in principle the continuation of fuel subsidies today
Ireland is now a country where there is in effect a cap on fuel prices because, as determined protesters found out last Easter week, the Government won’t allow prices rise above its own very low pain threshold. When they lost control of O’Connell Street on the days after Easter, they lost their nerve and lost control of the country
The premise of this Government in its new iteration of January 2025 was that budgeting on the hoof was over and that its figures would be facts. It was a promise that was abandoned immediately – and public spending bears no relation to what is planned
Minister for Public Expenditure Jack Chambers made great play over the summer, probably sincerely, of holding the line. But the events of this week wash that line away
In the noughties we flattered ourselves that our economic choice was between Boston and Berlin. The decline in political capacity is so palpable it seems our choice today is between Lisdoonvarna and Las Vegas. On the essential function of the State, on how to tax and spend, there is virtual political unanimity: nobody is prepared to propose a significant realignment of the tax base and nobody will propose limiting spending
The proposal that there should be early access to all drugs for rare diseases is pie in the sky unless we tax to pay for it. In the circumstances, nobody should be surprised by the stupidity or the cruelty of inflating the cost of expensive medicines. As politics proliferates, real difference has evaporated
Few one-party states are as united ideologically as the Dáil that meets on Friday. But competition is fierce, and therefore finding differences on something is essential. Friday’s session will end in disagreement not on any essential but on spurious differences. Vast sums will be squandered ineffectively. It might be a clue as to the priority really given to rare diseases. But it is certainly a guide on how to bandwagon on them
