The Oireachtas Joint Committee on Health met on July 12th to discuss the process for the review and approval of Orphan Drugs.  The Alpha One Foundation represented approximately 60 Alpha-1 patients, at the meeting, 21 of whom are currently receiving a drug called Respreeza on a “Compassionate Use” basis and approximately 40 more who would benefit greatly from having access to the drug for the first time.    

The Alpha One Foundation outlined to committee members the case for the life-changing therapy, Respreeza, to be made available to these 60 patients in Ireland who are affected by the preliminary decision of the NCPE and the HSE not to approve reimbursement of the drug Respreeza. Members of the Alpha-1 Patient Action Group listened to the discussion from the gallery.

To view the committee meeting in full click here.  To read the transcript of the full proceedings click here.  

Respreeza was approved by the European Medicines Agency in 2015 and is now reimbursed in 12 European countries. During what was a very informative meeting the HSE committed to communicating a decision on the reimbursement of Respreeza within the next 3-4 weeks. Over the last few days the deadline for the continued distribution of the drug to the 21 patients currently receiving it on a "Compassionate Use" basis has been extended from 31st July to 31st August.  For more information on Alpha-1, visit www.alpha1.ie

A1AG Dail 12July

Pictured outside Dáil Eireann, Dublin 2, following a meeting of the Joint Committee on Health on the funding of drugs for rare conditions were from Left – Right: Brendan Gallagher, Gerard Finnerty, Ann O’Rourke (Alpha-1 Patient Group), Deputy John Curran (Fianna Fáil), Orla Keane (Alpha-1 Patient Group), Deputy Mary Butler (Fianna Fáil), Professor Gerry McElvaney (Alpha One Foundation), Senator Colm Burke (Fine Gael), Frank Jennings (Alpha-1 Patient Group), Geraldine Kelly (Alpha One Foundation), Josephine McGuirk, John Hannan (Alpha-1 Patient Group).

What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.