Revolutionary new CF drug too costly but what price on a life?

IT was meant to be a day to celebrate. A day when the Cystic Fibrosis (CF) population in the south of the country finally got a well- deserved break as a dedicated, state- of- the- art CF unit opened to huge fanfare at Cork University Hospital on Monday. It had been four years coming and after encountering stumbling block after stumbling block, bureaucracy and endless red tape, Kerry charity Build4Life finally fulfilled its aim and opened the 20-bed unit which, let’s not forget, cost €2.3 million to develop with no help from the State.

But coinciding with the long-awaited celebrations on Monday was the terribly ill-timed news that HSE bosses had ruled out funding a revolutionary new drug that would add years to the lives of the majority of Ireland’s CF suffers.

Cystic Fibrosis Ireland had dubbed Orkambi ‘a game changer’ as it’s the first ever drug to target the underlying problems that cause CF, as opposed to existing medicines which only treat symptoms.

Similar to the new CF unit in Cork, this drug could add years to the lives of CF sufferers, but yet again the HSE appears to have washed its hands of it.

Despite government ministers and CUH management gathering in Cork on Monday to herald the opening of the new CF unit, let’s remember that there would be no such unit without the doggedness of Build4Life, its founder Joe Browne and its hundreds of loyal supporters. The government, and by extension the HSE, did not invest a single cent in the facility as the Kerry charity footed the entire €2.3m bill.

The opening was delayed on at least four occasions because there were no staff to run it yet, just a few months before an election, the unit is up and running. One can’t be blamed for wondering if this is a coincidence.

But now, just as one problem is solved, CF sufferers have been dealt another heart-breaking blow as the HSE deems the drug too expensive. Vertex Pharmaceuticals – who developed the life-changing drug – are seeking €160,000 per patient per year, with about 600 adults and children in Ireland set to benefit. That’s an annual outlay of €96m.

There’s no denying that with all the financial struggles the HSE is facing, such a cost is excessive, but by saying no, the HSE is once again turning its back on CF patients.

HSE Chief Executive Tony O’Brien said the HSE simply didn’t have the money to fund the drug, ‘irrespective of its efficiency’.

Try explaining that to a mother or father whose child’s life could change beyond recognition should they be given access to that drug. Tell it to the hundreds of Irish people who, for years, have been watching and waiting with bated breath.

Mr O’Brien has said that the government would have to provide additional funding if it wants patients to avail of Orkambi. Yet we were able to stump up €60 billion to save a banking system destroyed by corrupt bankers.

If they don’t come up with the funding, it’s the end of the road for CF sufferers – literally. What price on a life?