John Brassil (Kerry, Fianna Fail) | Oireachtas source

I welcome the opportunity to once again raise this very important issue. I understand that Deputy Sherlock put it down as a Topical Issue yesterday and it was not selected. He cannot be here today so I want to acknowledge that. Since we last spoke about this issue on which we hoped we would make some progress, unfortunately, we have regressed somewhat in that the HSE decided during the summer not to reimburse the drug for various reasons, to which I will return in a second. CSL Behring has been providing the drug as part of a compassionate access programme to 21 patients. I understand that 17 of them are in this jurisdiction. This will be withdrawn at the end of September.

I, along with Deputies Micheál Martin and Kelleher, have written to the Minister for Health on foot of this decision and the reply we got was interesting. The Minister outlined that the HSE suggested the drug has not proved itself to be clinically efficient. This is where the big problem lies. I have met the patients who are getting this drug. I have met most of the 21 patients who are getting it and they have made presentations to Members in the AV room. I ask the Minister to talk to John Hannon in Mallow who has been receiving the drug. That man was breathing with the aid of an oxygen tank before he got the drug. He had to retire early from this job as an engineer, a job he was very good at but where, unfortunately, he could no longer function. Since he has been taking that drug, he has been functioning as a normal human being. I ask the Minister to speak to James Coffey in Killorglin who has the combined condition of Alpha-1 antitrypsin deficiency and panniculitis, which basically rendered him bedridden for two out of every four weeks and put him in hospital for months upon months of each year. Seven years ago, he received the Respreeza double dose, which deals with the issue, and has been living a normal life ever since.

I might revert back to that particular situation because there are two other individuals in the country who suffer from the condition of combined alpha-1 deficiency and panniculitis and they are receiving a sister drug of Respreeza called Prolastin. They receive it from the HSE and get on with their lives and I think we have to do the same for James. We are caught in a dilemma. CSL Behring is providing the information. The HSE is saying, in good faith, I am sure, that the information is not sufficient. The cost of the drug is another issue that we have to come to terms with. In the meantime, there are 21 people, 17 of them in our jurisdiction, whose lives are being affected. Those are the people I represent and for whom I am trying to get reimbursement for the drug over the line, to let these people get on with their lives.

There seems to be more confusion in that the HSE has not been formally informed. The drug has been provided to the Alpha One Foundation which Professor McElvaney is involved with. The Alpha One Foundation administers and distributes the drug, and it has been informed that the compassionate access programme has come to an end. Lest there be any ambiguity, I have asked the Alpha One Foundation to contact the Minister's office directly and confirm to him and the HSE that this drug is no longer available as of 30 September, so we really have only one week to try to sort something out, in particular for the 21 people, of whom 17 are in our jurisdiction.

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