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

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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).

Want to get EDUCATED? Want to get INVOLVED? The IPPOSI Patient Education Programme is now open for applications. This is a 6-month blended-learning education programme, the first of its kind in Ireland, and is being piloted from September 2017 to March 2018 with a number of topics related to healthcare and the development of new treatments.

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The pilot programme is being led by IPPOSI in partnership with a number of education partners and will cover the following topics:

  • Understanding Clinical Trials – delivered by the University College Dublin Clinical Research Centre
  • Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance and Pharmacoepidemiology – delivered by the Health Products Regulatory Authority (HPRA)
  • Health Technology Assessment principles and practices – delivered by the Dept. of Medicine & Therapeutics, Trinity College Dublin, in association with the National Centre for Pharmacoeconomics (NCPE)

All of the information you need to complete the application - including a Guide for Applicants, and a link to the online application form - are available on the IPPOSI website here. The closing date for applications is 5pm on Friday, June 30th 2017.

There is a webinar for those interested in applying taking place this coming Monday, 26th June, from 2 - 3 pm. This will cover an introduction to the course and a Q&A.  Register here

For more information about what IPPOSI does visit IPPOSI.ie

The Alpha-1 Action Group are holding a protest at the gates of Dáil Éireann, Kildare Street, Dublin 2 tomorrow Wednesday, May 31st at 12.30pm. The protest is to urge the Government to fund the life-changing Respreeza therapy as soon as possible. Calling on all those affected by Alpha-1, their families, and friends to attend on the day to support the group and this important cause.

The Alpha-1 Action Group are a group of Alpha-1 patients campaigning for Respreeza to be made freely available in Ireland for the treatment of emphysema caused by Alpha-1. If the life-changing Respreeza is funded it could benefit up to 60 patients with Alpha-1, also known as genetic emphysema.

The Dáil Éireann protest is being organised by the Alpha-1 Action Group & is supported by the Alpha One Foundation.

For Alpha-1 Action Group updates check out Facebook https://www.facebook.com/A1PRespreeza/ and Twitter https://twitter.com/a1_action.  

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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.