Huge cost of Orkambi deal will be major challenge for HSE

The Government’s decision to fund a package of groundbreaking new drugs to treat up to 600 cystic fibrosis patients will be widely welcomed, but it raises many questions.

The most glaring of these is how much the deal between the Health Service Executive (HSE) and Vertex Pharmaceuticals will cost. The US company's initial demand of €159,000 per patient per year for Orkambi – €400 million overall over five years – was described by the HSE as exorbitant. How much needs to be knocked off this price-tag for the deal now arrived at not to be exorbitant?

Whatever the price, this will probably be the most expensive drug agreement reached by the State, with the sum of money involved equivalent to the price of a small hospital.

The other pressing issue is where this money will come from. Is the Government providing additional funding specific to this deal? Or is it coming from the health budget?

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The demands on the health services are huge and varied. Money spent on new drugs, even life-saving drugs, is money not available for homecare, hip operations or counselling sessions.

Political protests

Last year, the HSE concluded an agreement with the pharmaceutical industry which promised to deliver savings of more than €700 million. This money was supposed to be spent on new drugs.

It now looks as though the deal with Vertex will swallow a large proportion of this money, even though the company was not party to the wider agreement with the pharmaceutical industry. But what about all the other new drugs – of which there are more than 40 – which have been developed but have not been approved for reimbursement?

Despite the length of time it took to strike a deal with Vertex, it was always inevitable that one would be reached. There was no way the Government was going to risk the kind of political protests that would ensue if Orkambi were rejected; memories of the medical card fiasco of a few years ago, when families of sick children were refused free treatment, are too fresh.

In many parts of the world, CF is so rare that governments can approve the new treatments from Vertex without undue strain on their health budgets. This is not the case in Ireland, which for genetic reasons has the highest prevalence of the disease globally. This is why so much was at stake in these negotiations.

There was plenty at stake for patients too. Orkambi and Kalydeco have greatly reduced hospitalisations for people with CF, and this should result in increased life expectancy.

As CF Ireland pointed out, while new cancer drugs are being developed all the time, these were the first new treatments for the disease in two decades; when a bus comes that seldom, you make sure you are on it.