Orkambi access for cystic fibrosis patients
Micheál Martin raises uncertainty over continued access to Orkambi and calls for patient advocacy; the Tánaiste acknowledges patients’ distress and promises to follow up.
In the programme for Government there is a commitment to establish an independent patient advocacy service and another commitment to "ensure appropriate patient care pathways". Anyone who listened to Ms Jillian McNulty, who has cystic fibrosis, being interviewed on "Morning Ireland" this morning would have heard her outline, in a very articulate way, the extraordinary impact the drug Orkambi had had on her quality of life. Essentially, she has five more weeks supply of the drug and does not know what will happen to her on an individual basis. It seems in the entire debate that the issue of patient advocacy and patient care pathways is not at the highest end of the agenda. The new Minister for Health, Deputy Simon Harris, is adopting a very responsive manner to Deputies who are raising these issues.
He has been very fair and open and is genuinely seeking to help patients in these situations in the provision of cancer drugs and so on, an issue we dealt with earlier in the week. However, for people with cystic fibrosis, Orkambi is a life-changing drug. It is a condition that is particular to Ireland and the genetic make-up of Irish people. It is one in respect of which we should be in the foreground in breaking new ground, with new technology and new innovations. I accept that the pharmaceutical companies have responsibilities too and that there are further negotiations which have to take place on Orkambi. However, people like Jillian McNulty who are on the medication should be facilitated in its continuation. The negotiations should be intensified on all sides, given the commitment in the programme for Government to establish an independent patient advocacy service, which is necessary. I do not know what the timeline is for that advocacy service.
The Tánaiste made legislative commitments on the amount of cash a person could have on his or her person which would allow gardaí and the Criminal Assets Bureau to investigate, question and arrest people in connection with the proceeds of crime, particularly as a result of drug sales. Changing the threshold for the freezing and confiscation of property will require legislation, in particular an amendment to the Proceeds of Crime Act 1996. Will the Tánaiste indicate if that legislation will be before us before the summer recess? The seizure of cash threshold might be a matter to be dealt with in secondary legislation and involve the amendment of the relevant statutory instrument. Does the Criminal Assets Bureau's power to seize property require legislation? Will all three Bills be before the House before the summer?
Comment on this
I thank the Deputy for his comments on the approach the Minister for Health has taken to the very sensitive issue of the drugs available to patients. I will come back to him on the matter of patient advocacy development included in the programme for Government. I am sure most Members heard Dr. Barry speak this morning about the assessment process for these drugs and the particular stage Orkambi was at. I also heard the patient who said she had five weeks' supply left. Obviously, I understand, as the Deputy does, how very difficult the situation is for patients and their families. It is the wish of the Minister for Health and the Government generally to ensure that in the circumstances people will receive the drugs they need. We have a system of assessment and the assessment of Orkambi is at a certain point. The assessment group has stated there are major issues with the assessment. The cost presents a particular difficulty. I welcome the decision taken yesterday by Bristol-Myers Squibb on continuing to provide another drug and making it available in a compassionate way to people at this point. It is critical that drug companies do not hold countries or patients to ransom in pricing. The real challenge is presented by the very high prices sought by manufacturers for new drugs. Dr. Barry made it clear this morning that in his expert opinion the manufacturers of the product had got it wrong when it came to pricing. Obviously, we want to ensure patients will receive the drugs they need. I have no doubt that there will be intensive discussions about this. The Minister for Health is very conscious of the issue and has already made several announcements on other drugs this week. He is working hard to ensure progress can be made in the supply of Orkambi. The assessment made has raised questions about the efficacy of the drug, although for some patients, it clearly has worked to their benefit.
Some of the necessary criminal justice legislation to which the Deputy referred can be introduced, as he says, by way of regulations. However, provisions in relation to the Criminal Assets Bureau will need legislation. It is being drafted urgently and I hope to be in a position to bring it to the House in the coming weeks. I hope to receive support across the House for its passage in this term.