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Minister must intervene to ensure Alpha-1 patients have medication provided long-term – O’Reilly

5 December, 2017 - by Louise O'Reilly TD


Sinn Féin Health Spokesperson Deputy Louise O’Reilly has written to the Minister for Health calling on him and the HSE engage patients and clinicians in the row over the reimbursement of the cost of the drug Respreeza which is used to treat sufferers of Alpha-1, and ensure it is provided long term beyond the 6 months which the HSE and the manufacturer have currently agreed.

Teachta O’Reilly said:

“Alpha-1 is a genetic condition that can cause severe lung and liver problems is one of the most common inherited conditions in Ireland. The difficulties experienced by suffers of Alpha-1 have been exacerbated in recent months due to a HSE decision not to cover the cost of the administration of the drug. However, the larger difficulty is the refusal of the HSE to approve the drug for reimbursement.

“For some time now those suffering from Alpha-1 had been receiving a drug called Respreeza, and before the summer the Alpha-1 Foundation representing sufferers explained to the Health Committee the improvements it was making in the lives of those who were taking the drug.

“Unfortunately, a number of weeks ago the HSE said it would not cover the costs of the drug for reimbursement. As a result, the patients spent five weeks off Respreeza before the HSE and the manufacturer, CSL Behring, came to an agreement around administration costs for the next 6 months, but the issue still stands as regards reimbursement of the drug in the long term.

“It was relayed to me over the weekend that a second of 17 patients who had, until recently, been receiving the drug Respreeza passed away.

“I have written to the Minister calling for him to intervene and arrange to meet with patients and clinicians in order to resolve this situation and ensure that Respreeza is provided long term beyond the 6 months which the HSE and the manufacturer have currently agreed.

“These patients and their families have been treated horrendously. It is time for the Minister, the HSE, and CSL Behring, in the interests of the patients, to come together to bring this issue to a conclusion.”

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