Alphas have received 200 lung transplants, extending lives, over the past two decades. In 2005, the United Network for Organ Sharing (UNOS), the agency that administers the Organ Procurement and Transplant Network (OPTN) changed the allocation system for lung transplantation to make it more equitable for all. The system was changed from “time on the list” to disease specific categories. The Alpha-1 Community with the help of our medical and scientific advisors reviewed the proposed system and commented on numerous occasions to UNOS, the government contactor which allocates lungs. The Alpha-1 Community received some concessions but not all and consequently Alphas have been unintentionally disadvantaged.

The intent of the new scoring system to allocate lungs was to reduce deaths on the waiting list, which has been achieved, but there may be unintended consequences. The new scoring system is a "Rube Goldberg" computer model which does not take into account the longterm survival benefits to Alphas or other lung transplant recipients. Therefore, data that indicates that Alphas who receive double lung transplants have the most successful long term survival is not used to evaluate the allocation score. (Those Alphas who have received single lung transplants have excellent survival statistics too.)

As a result, the number of Alphas being transplanted has dramatically fallen from a high of 80 patients per year to 37 in 2007 and continuing to fall while the number of all lung transplants has increased 40% from 1000 to 1400.Today, over 100Alphas are languishing on the UNOS waiting list. This is simply wrong; it is not fair or equitable.

The Alpha-1 Foundation with the support of the Alpha-1 Association has petitioned UNOS to establish a separate LAS grouping for Alphas based upon our unique genetic clinical factors, but we need your help. We can not fight this with abstract statistics alone; we need your personal stories, we need to communicate your frustrations. We need to go back to those in Washington who oversee transplant policy with real life experiences to right this wrong.

Please call 1-800-521-3025 ext.14 or email gpaul@alpha1.org to request a Personal Story form. Bettina and Ken Irvine are leading this advocacy issue with the support of the board of the Alpha-1 Association and the Alpha-1 Foundation. Bettina received a double lung transplant in 2004 before the organ allocation system was changed, because her doctors were concerned at her age, then 61, she would NEVER receive a transplant under the new Lung Allocation System. Bettina's personal mission is to assure that all those Alphas who are in urgent need of a lung transplant receive timely attention.