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Speaking to MI following his address to the North/South conference on rare diseases, held recently in Dublin, Prof Michael Barry said there needed to be more transparency in the process.
“It’s hard for us to understand sometimes where they [industry] get their prices,” Prof Barry told MI.
“These are astronomical. I have given some examples of over half a million [euro] per patient, per year. I don’t think there is any transparency around how that price is arrived at. For example, is it all research and development? I’m not sure. So I think there is a lack of transparency there.”
During his presentation, Prof Barry had some critical words for the high cost of drugs set by some pharmaceutical companies.
The NCPE conducts health technology assessments (HTAs) of pharmaceutical products for the HSE and makes recommendations on the issue of reimbursement. The HSE decides whether or not to accept the recommendation of the NCPE.
Prof Barry also told MI that he is in favour of the establishment of a new Rare Disease Technology Review Group within the HSE to be part of the reimbursement assessment process in relation to drugs for rare diseases.
“I would be hopeful that we can see such a group which then will enable the voice of stakeholders, like prescribers, patients and patient groups, to have a say in relation to the access to rare disease medicine,” said Prof Barry.
The NCPE Director said he believes this is something the Executive is considering.
Asked whether he thought the NCPE receives unfair criticism because of its decisions not to recommend the reimbursement of some drugs, Prof Barry said: “I’m not so sure if we get a hard time.”
He added: “I completely appreciate patient concerns, in particular for access to medicines. If it was me, I would want access to medication.”