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Patients’ lives being put at risk in row over cost of Respreeza drug - Louise O'Reilly TD

21 November, 2017 - by Louise O'Reilly TD

Sinn Féin Health Spokesperson Deputy Louise O’Reilly has called on the HSE and the Minister for Health Simon Harris to engage patients and clinicians in the row over the cost of the drug Respreeza which is used to treat sufferers of Alpha-1, a genetic condition that can cause severe lung and liver problems.

Speaking today, Deputy O’Reilly said:

“Anyone who knows someone who suffers from Alpha-1 will understand the great difficulties it causes in their life. This genetic condition that can cause severe lung and liver problems is one of the most common inherited conditions in Ireland. 

“In recent years those suffering from Alpha-1 have 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.

“I met many of the sufferers who were taking Respreeza after that Committee meeting and in my constituency clinics since, and they have all extolled the benefits of the drug.

“Unfortunately, in recent weeks the HSE said they will no longer be covering reimbursement. The patients are now in their third week of not having access to Respreeza.

"This is due to many issues but in this particular instance it is because neither the manufacturer, CSL Behring, nor the HSE, are willing to pay distribution and administration costs which are estimated to be about €120,000 per annum.

“Over the weekend the first of 17 patients who had, until recently, been receiving the drug Respreeza passed away. 

“I am calling on the HSE, the Minister for Health, and CSL Behring, to meet and to resolve this situation as the lives of the patients are being put at risk and it is causing severe emotional distress to their families.

"This is a shocking state of affairs, and one which nobody can stand over."

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