TRIO Legislative Action

TRIO Actions/Reports on Transplant Legislation at the National Level

TRIO members play an important role in making real our motto: "The Voice of the Transplant Community" especially when it involves speaking out on transplant issues on Capitol Hill in Washington, DC.

On this page we present current information on legislative status and activity that affects our transplant community as compiled by TRIO members working with our legislative partners (i.e., the "Roundtable" and the “Immunosuppressive Drug Coalition,” - working coalitions of transplant patients, professionals, and research foundations - and other joint activities with sister organizations - such as NKF - who lobby legislators with us on behalf of the transplant community).

August 10, 2009: Mike Sosna, TRIO Public Policy Chair, provided an update to the link previously reported here by our TRIO Roundtable representative, Linda Cheatham:

Attached is a memo (click here to read that updated memo) from Bryan Cave (a firm which is helping various transplant related organizations with health care reform and the immunosuppressive bill). There is so much being written and said in the media about the status of the various health care bills. The attached PDF gives you a clear report on what is happening in the House and the Senate.
June 18, 2009: our TRIO Roundtable representative, Linda Cheatham, reported:

Attached is the final letter (click here to read that letter) which was sent to 3 different groups of senators/reps who service on various health and finance committees.

Last Friday, I went with NKF’s lobbyists to visit Representatives from ND, MD and CA. I was the “poster child” for donation and they were pitching the health aides of these Congressmen to sign on as co-sponsors of the immunosuppressive bill. BTW – the bill as currently drafted would apply only to kidneys going forward. If we get this one passed, then we need to get it expanded to ALL transplants going forward and then we need to get it made retroactive for the rest of us.

The Congressional Budget Office said this bill would cost $800 million over 10 years, which is DOWN $200 million for the time is was scored in 2007, due to the increase in generic immunosuppressive drugs.
March 12, 2009: TRIO Board member, Jim Gleason, reported:

Working with the NKF, my wife, Pam, and I participated in a "Legislative Fly-in" along with about 50 other advocates to receive specialized training on how to effectively lobby with Capitol Hill leaders on our transplant related issues. Specifically these were the new bills being introduced into both the House and Senate extending financial benefits for transplant drug coverage. Such Fly-ins are scheduled regularly providing opportunity for each person to be a "poster child" in speaking from first hand life experiences related to that legislation.

As a heart recipient out almost 15 years, now married to a "donor mom" (Pam lost her 13 year old son who became an organ donor), we formed a very powerful team to convey that message to the legislators from our home states. Meetings are set up by a professional lobby support group and all fifty people got to march on Capitol Hill to add such testimony in support of the legislation, making specific reqeusts for action in each meeting. To us this was a fascinating experience of democracy in action, the voting public meeting face to face with the elected officials, making their wishes known.

One week later, Pam got to repeat the experience as part of a similar Fly-in with the Ameican Liver Foundation where she works as Executive Director of the Delaware Valley Chapter. In some cases she was scheduled with the same office we had visited the prior week, so that office representative already knew her and she was pleasantly surprised to see they had actually taken action based on the request of that earlier meeting. In each case, TRIO was mentioned, adding further weight to the request at hand, along with our sister organizations, forming a coalition that carries real weight in this government oasis of leadership dealing with so many complex issues.

For more information about TRIO National Legislative activity, please call TRIO at 1-800-TRIO-386. You may also contact our Public Policy Chairman, Mike Sosna, directly at mikesosna@optonline.net or phone: 516-902-8111

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