Written answers

Thursday, 8 December 2016

Department of Health

Disease Management

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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176. To ask the Minister for Health further to Parliamentary Question No. 93 of 1 December 2016, the status of the development of the terms of reference, required membership and reporting relationship for the working group to bring forward appropriate decision criteria for the reimbursement of orphan medicines and technologies; the timeline for these actions or when they can be expected; and if he will make a statement on the matter. [39210/16]

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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177. To ask the Minister for Health further to parliamentary question number 93 of 1 December 2016, and in relation to the working group to bring forward appropriate decision criteria for the reimbursement of orphan medicines and technologies, the orphan medicines and technologies that will be considered; if there are any medicines earmarked that need to be evaluated under any new criteria developed; if the decision criteria will be open and transparent; the persons or bodies involved in the decision making process; and if he will make a statement on the matter. [39211/16]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 176 and 177 together.

Recommendation 30 of the National Rare Disease Plan recommends that the HSE develop a Working Group to bring forward appropriate decision criteria for the reimbursement of orphan medicines and technologies.

The HSE has advised my Department that the terms of reference for the proposed Rare Diseases Technology Review Group are at final draft stage. A chairperson has been provisionally identified subject to provision of expert pharmacologic support to advise the candidate. The rare disease drugs to be considered by the Rare Diseases Technology Review Group have not been determined yet.

The membership of the group will include:

1. A minimum of three members who are Consultants in Rare or highly specialised diseases, recommended by the relevant professional society, faculty or college, who have content experience in the specific discipline and are approved by the Clinical Lead for the National Clinical Programme for Rare Diseases. In addition the Clinical Lead for the National Clinical Programme for Rare Diseases will be a member;

2. Chief Pharmacist – to be advised;

3. A minimum of one member with Health Economical, Pharmacoeconomics or statistics and epidemiology expertise;

4. A minimum of one invited participant from a related designated centre of expertise, recommended by the Clinical Advisory Group for the National Clinical Programme for Rare Diseases, as required, according to the speciality area;

4. One representative appointed by HIQA;

5. Patient Group representative;

6. Primary Care Reimbursement Services representative;

7. Up to three additional members may be appointed.

The group will report to the HSE Committee for Optimising Pharmaceutical Value. Patient interest groups recently met with the National Director for Acute Hospitals and were asked for their comments on the final draft document.

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