Sir, – I am very pleased that you have published my letter of March 4th. I would, however, like to draw your attention to an error. My letter to you stated that the price of Respreeza was “12 times the price recommended by the HSE drugs group”. Unfortunately this was published as “123 times”. – Yours, etc,
Dr KIERAN HARKIN,
Primary Care Centre,
Inchicore, Dublin 8.
The error, which occurred in the editing process, is regretted.
Sir, – I write further to recent correspondence concerning the drug therapy Respreeza for patients with Alpha-1, or genetic emphysema.
The reference to the price being requested by the drug manufacturer as 123 times that which the HSE Drugs Group is willing to pay is so implausible that it can only but be construed as a typographical error. This is not least because, in the first instance, we don’t know what price the HSE is happy to pay.
There is no question but that there is a distance between what the drug company and the HSE want regarding price. However, let us be clear, the Alpha One Foundation, which represents and advocates on behalf of people with Alpha-1, firmly believes that the taxpayer should get best value for money when it comes to agreeing to reimburse new therapies. Such matters can only be resolved by everyone getting around a table to agree a fair price. We also agree on outcomes-based models of access, so that if a therapy isn’t working for some patients, then it should be discontinued.
We believe that patients should not be held to ransom to deadlines from a drug company where those already in receipt of the drug on compassionate grounds will have it cut off. Nor should they be kept in indefinite limbo through delays by statutory bodies in coming to an agreement with the drug company for a therapy that has been clearly evidenced, as detailed in the Lancet in July 2015 and the Lancet Respiratory Medicine in December 2016, to be life-changing in slowing progression of the disease. Respreeza is a therapy already licensed by the European Medicines agency, and available in eight European countries, from Italy to Spain.
We are encouraged that the HSE has recently agreed to meet with the drug company for further discussions. Patients with Alpha-1 have enough challenges in their lives. Let access to a drug that clearly works not be another one. – Yours, etc,
KITTY O’CONNOR,
Chief Executive,
Alpha One Foundation,
RCSI Building,
Beaumont Hospital,
Dublin 9.