Minister Harris And HSE Urged To Engage Over Alpha-1 Treatment Row

Minister for Health Simon Harris and the HSE have been urged to engage with 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 six months currently agreed.

Making the call, Sinn Féin Health Spokesperson Deputy Louise 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 six 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."

Deputy O'Reilly concluded: "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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