Sir, – As one who understands the current actions being taken by the Government to sort out the economic problems of the country and, by and large, supports those actions, I am infuriated by the decision by the National Centre for Pharmacoeconomics (not to make available the drug pirfenidone to sufferers of a rare form of lung disease) for a number of reasons (Home News, April 15th).
1. It is based on flawed reasoning because pirfenidone, as the only effective drug for treating idiopathic pulmonary fibrosis (IPF), will reduce other costs as the treatment takes effect. People who suffer from IPF are already incurring substantial costs on medication and oxygen. In its statement, NCPE make no reference to frequent hospitalisation which would contribute significantly to the already high cost of managing IPF patients. If all of these costs are reduced by treatment with pirfenidone, the treatment would be cost neutral or approaching it.
2. Pirfenidone was approved in February 2011 by the European Medicines Agency as the first licensed treatment for IPF. In addition, in March 2013, the National Institute for Health and Clinical Excellence in England and Wales approved funding for the drug for treatment of IPF. There is an appalling inconsistency in the NCPE decision on the pirfenidone application and its decision on the medication for cystic fibrosis. In that case the correct decision was taken. In this case it was not only wrong but was also discriminatory. Are people with IPF of less value than those with CF?
3. The NCPE statement bears very little relationship to the purpose of medication. Phrases such as “high drug acquisition cost”, “the significant budget impact”, “the product is not cost effective”, raise a serious question about the parameters applied by the NCPE. While they appear to be more economics-based than medical, the points raised under 1, above, do not appear to have been considered in its judgment. The NCPE ruling has been taken against the wisdom of the EMA and NICE and the recommendation of the Irish Thoracic Society .
4. As someone who suffers from IPF and has been on the waiting list for a lung transplant since last autumn, it is very disappointing and saddening to have to accept that this ruling by NCPE will dictate the future quality of my life. It is also totally unacceptable that these decisions are being taken by bureaucrats and not by some of the best physicians and surgeons in this field in the National Heart and Lung Transplant Unit in the Mater University Hospital and the Irish Thoracic Society.
It is of the greatest urgency that all citizens become aware of this ruling and that this illogical and unjust decision be reversed before Irish people die unnecessarily. – Yours, etc,
FRANK TIERNEY,
Farmleigh Woods,
Castleknock,
Dublin 15.