Sir, – Anthony McDonnell's article "Providing Orkambi to CF sufferers will cost lives" (Opinion & Analysis, April 24th) needs to be challenged.
The overall thrust of the article is that health resources are finite and in “tackling one problem, we are in practice taking money away from somewhere else”. His article concludes, “At a time when our health system is struggling to stay afloat, we should focus the resources we have, where they can achieve the most good for the greatest number of people possible, rather than cherry-picking people based on how sad their story appears”.
Time and time again when the issue of resources for cystic fibrosis services was raised by our association over the past 50 years, we were told such resources were not justified and the “many must be prioritised over the few”. If our association had accepted these arguments then people with CF would still be dying before they reached primary school in Ireland, as they did 40 years ago. Now thanks to a combination of better hospital services and access to ground-breaking new medications such as Kalydeco and Orkambi, people with CF in Ireland are now expected to live into their thirties or forties.
The Government has entered into at least two major agreements with the pharmaceutical industry in Ireland to reduce the costs of other drug therapies for which Ireland paid over the odds for many decades. The Minister for Health has stated that at least some of this these savings will be used to pay for new and innovative medications. The proposed increased use of generic drugs and bio-similars is estimated at bringing savings of €750 million to the Government. In short, the cost of Orkambi can be met by savings to the existing drugs budget in Ireland.
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Orkambi is not only a high-tech drug, but is also an orphan (rare) disease drug therapy. Mr McDonnell fails to take into account the significantly higher research and developments costs and risks associated with developing drugs for rare diseases. Drugs for rare diseases are called “orphan drugs” because most drug companies feel it is not financially worthwhile to develop such drugs because of the perceived reluctance of government to pay the higher costs associated with such therapies. The successful funding of Orkambi will result in more research and development into rare disease drugs, not just for those with CF but for other rare diseases. In short, the funding of Orkambi will save more lives and not only within the CF community.
While Mr McDonnell acknowledges that other health savings will be made through Orkambi, he does not give these savings sufficient credit. Orkambi has shown to reduce potential hospitalisations by up to 40 per cent. The CF population in Ireland combined spent over 15,000 days in hospital in 2015. Massive savings will be made in the existing health budget.
Ireland is not acting out of kilter with other countries in approving Orkambi. Germany, Austria and the US have already approved Orkambi, with other countries such as France and Italy likely to follow very shortly. Indications are that Ireland got a very good deal that incudes discount on pipeline drugs from the same company that may be even better than Orkambi, a major innovation for which the Government should be congratulated.
We would encourage the Government and the HSE to fully implement the commitments in the National Rare Disease Plan to review the existing HTA/QALY system through which drugs are assessed in Ireland and to develop a system that is more orphan drug-friendly, not just for CF but for patients with other rare conditions such as muscular dystrophy, Alpha One, Huntington’s disease, Battens disease, cystinosis, and the skin condition EB. – Yours, etc,
PHILIP WATT,
Chief Executive,
Cystic Fibrosis Ireland,
Lower Rathmines Road,
Dublin 6.