500 signatures reached
To: Simon Harris TD, the HSE and the drug company CSL Behring
RESPREEZA for ALPHA 1 Patients in Ireland
Calling for the HSE to agree a fair price for reimbursement of the therapy before it's too late.. "Patients are urging both sides to end the current deadlock over the provision of Respreeza to a group of 21 patients who had been receiving the therapy on a "compassionate-use basis" on the conclusion of a clinical trial here. Following a HSE decision in August not to approve reimbursement of the Respreeza therapy for Alpha-1 patients, CSL Behring agreed to continue to provide the therapy to these patients until the start of a new clinical trial in 2018, however, it has refused to continue covering the cost of administering it.
Patients are now several weeks of not having access to the therapy which is being stored in a central pharmacy warehouse but with no service provider to administer it. Many of the patients have been on the therapy for more than ten years and have no other therapy option. "clock is ticking https://www.youtube.com/watch?v=mIrwOlgO1J4 please see our facebook or twitter pages for updates!
Why is this important?
Campaigning for the life-changing therapy... RESPREEZA to be approved / available here as it is in TWELVE OTHER EUROPEAN COUNTRIES!
It is estimated that over 3,000 people here in Ireland suffer with Alpha One, a genetic condition affecting the lungs, liver and skin. For some patients, a therapy trial back in 2006 offered a new lease of life and over time went on to improve their health, giving them some hope of a brighter future.
Sadly back in 2016, patients were then told the distressing news that the pharmaceutical company that provided them with the life changing therapy would be withdrawing it, leaving patients right back at square one again. So, with the clock ticking representatives of Alpha One are now, calling for the HSE to agree a fair price for reimbursement of the therapy before it's too late.