Write to your Congressman:
To use the on-line NKF's "write to your Congress" application to express support for current transplant related pending legislation, click here

Congressional Organ and Tissue Donation and Transplantation Awareness Caucus
In our capital's legislative members, some are clearly identified as in support of our mutual cause and align themselves with others of similar support by enrolling in a "caucus" - for the current listing of the members of that group, <-- click here

Transplant Roundtable Update
On this page below 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 "Transplant Roundtable" and the “Immunosuppressive Drug Coalition,” - working coalitions of transplant patients, professionals, and research foundations - and other joint activities with sister organizations who lobby legislators with us on behalf of the transplant community).

Note: the Transplant Roundtable, founded in 2001, is an alliance of transplant focused organizations comprised of representatives from (in alphabetical order) American Association for the Study of Liver Diseases, American Association of Kidney Patients, American Association of Tissue Banks, American Liver Foundation (ALF), American Society of Nephrology, American Society of Pediatric Nephrology, American Society of Transplant Surgeons (ASTS), American Society of Transplantation (AST), Association of Organ Procurement Organizations (AOPO), Eye Bank Assocation of America, International Society of Heart & Lung Transplantation, Juvenile Diabetes Research Foundation, NATCO–the Organization for Transplant Professionals, National Kidney Foundation (NKF), Polycystic Kidney Disease Foundation, Renal Physicians Association, Transplant Recipients International Organization TRIO) and the United Network for Organ Sharing (UNOS)

• Jan 18, 2012 - agenda and notes from Roundtable meeting (<-- click to open PDF file of notes)
• Dec 16, 2011 update on drug coverage legislation:
  
  Subject: Immuno Update
  
  Although we are all disappointed our legislation did not make it into
  consideration for these final days of Congress, I thought you would be
  interested in knowing the House bill has gained about a half dozen
  cosponsors in the past week. That is encouraging, considering most if not
  all of us have not done face-to-face meetings with Hill staff this month.
  This is the result of your organizations' efforts with e-advocacy,
  petitions, letters, etc., which I know many of you have been doing. NKF
  plans to issue an Action Alert to our patient and professional advocates in
  early January.
  
  Thanks to all of you for your hard work throughout the year. As a
  congressional staff member involved in this recently wrote me, "keep up the
  good fight, we'll get there eventually."
  
  I wish you each of you a wonderful Holiday.
  
  Troy Zimmerman
  Vice President for Government Relations
  National Kidney Foundation

• January 28, 2011: Transplant Roundtable Report by TRIO representative , Linda Cheatham (a PDF download)
• January 6, 2011: Msg from Transplant Roundtable leadership:
  

  Dear All:
  We wanted to take this opportunity to update you on the immunosuppressive legislation.
  
  During the final weeks of the 111th Congress, NKF, AST and ASTS approached the sponsors of the immuno bill with a proposed short-term alternative to provide coverage beyond the current 36 months until January 1, 2104. We suggested extending Part B coverage (for immunos only) for existing Medicare ESRD beneficiaries through Dec. 31, 2013, to enable them to retain immuno coverage until the health insurance exchanges are effective 1/1/14 (the proposal would not have restored coverage for those whose eligibility already has expired). Thus, anybody transplanted on or after 1/1/08 and Dec 2010 and whose coverage expires between 2011 and 2013 would have coverage until Jan 2014, qualifying for up to 36 additional months.
  
  While House and Senate sponsors on both sides of the aisle were very interested and worked diligently on our behalf, CBO was not able to s core it until Dec. 21. The good news is it was only $100 million over 5 and 10 years (the broader coverage contained in the House-passed health reform bill in 2009 was $600 million over 10 yrs). The bad news is it was too late in the process for the year, but nevertheless Committee staff is encouraged by the estimate.
  
  We are confident this will be helpful in the 112th Congress. In the meantime, contact either of us if you have any questions. Thank you.
  
  Troy Zimmerman This email address is being protected from spambots. You need JavaScript enabled to view it.
  Bill Applegate This email address is being protected from spambots. You need JavaScript enabled to view it.

• December 14, 2010: TRIO supports the ASTS position statement on Arizona Medicaid Transplant Cutback issue
  to read the ASTS press release, click here --> ASTS Arizona Factual Response
  
  Additional information:
  to read the recommendations to the AHCCCS offered by the Medical Executive Advisory Committee comprised of Arizona transplant program representatives, click here --> Executive Summary
  
  More on the story: NY Times: Arizona Recipients Speak Out on Inaccurate Supporting Data
  
  
• Nov 29, 2010: TRIO/Transplant Roundtable Update on Arizona Medicaid Transplant Cuts

Arizona's Medicaid program (Arizona Health Care Cost Containment System) has made significant cuts to its transplant programs. Effective 10/1/2010, the following non-experimental transplants will not be covered for persons 21 years and older.

• Nov 19, 2010: TRIO/Transplant Roundtable letter to Congressional leaders
  

  Per the Transplant Roundtable meeting on Tuesday, attached is a letter to go to the leadership in both the House and Senate asking for them to pass an omnibus spending bill as opposed to a Continuing Resolution and then highlighting the HRSA DoT organ donation and transplantation programs as an example of what might get cut if they choose to do a CR. For those not in our meeting, a CR will strip the slight funding increase and report language achieved in the Senate version this year. (click on title below to see full text of letter):

  Support for Omnibus Spending Bill and Increased Funding for Organ Donation and Transplantation Programs
  
  
• Nov 16, 2010 Report by Linda Cheatham, TRIO representative to the Transplant Roundtable:
  

  1. Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act.

  Letter was sent yesterday by 13 members (TRIO included) of the Roundtable to Senator Reid and Speaker Pelosi, expressing our support of this bill yet this year. (click here to see final letter).

  To get it passed, it either has to be attached to one of the 2011 appropriation bills which have not yet been passed or passed as a separate bill (not likely) during this session. As one of the guys said “it would be a Hail Mary pass during a lame duck session” (i.e., highly unlikely).

  Congress is looking for offsets to pay for it. They are expecting us to find the offsets, instead of looking for the offsets themselves!

  No one yet knows the effect of the Healthcare Reform bill on the need for transplant medication support. It now requires all states to provide insurance coverage for people with pre-existing conditions. So how many will no longer need such coverage under the above bill, if they get insurance through the state programs?

  Bill will need all new sponsors next year, especially with all of the changes in the House and Senate membership.

  The Roundtable will endorse the bill promulgated this year by CMS (DOT) if it is up for passage in the lame duck session or in the new session in January.

  The Kidney Caucus will have to be reconstituted.

  2. Legislative Agenda 2010, 2011, 2012

  Living Donor Tax Credit bill would provide $5,000 tax credit to living donors for expenses and lost wages incurred while donating a kidney (other donations too).

  Twenty states already have some sort of tax deduction for being a living donor.

  No one has stats on the effect of the tax credits in the 20 states in increasing living donation under these programs or the cost in lost taxes to the states.

  Living donations peaked a couple of years ago and are actually down for the past couple of years, because of the economy.

  Question is – should the TX Roundtable continue to push for this bill this year (and reintroduce it next year) or just wait until next session?

  Consensus – push on everything related to donation.

  
  

  Family Medical Leave Act – continue to push for it to be extended to include organ donation.

  Immunosuppressive Coverage – continue to push on it this year in the lame duck session (see above).

  Organ and Tissue Donation Caucus – Needs to be reconstituted, given the major changes in Congress for the next session.

  3. RELIVE Project – this is an NIH-funded project to collect data on the health of living donors and the side effects of living donation. It will NOT be funded in the future, per NIH, as funding is scare. Doctors want this data base in order to show living donors what their risks are.

  4. AHRQ (Agency for Healthcare Research and Quality). ASTS and AST had a meeting with AHRQ re: TX policy and issues. Transplant is the key issue at HRSA – but it is unknown what their key issue will be in the next Congressional session.

  5. OPO and Transplant Center Conflict Resolution. There are conflicts between the OPOs, whose focus is protecting their certification, and the Transplant Centers, whose focus is to protect outcomes. CMS is aware of the conflicts and is working with AST, ASTS and AOPO to work out the issues.

  6. Medicare payment for Pancreatic Islet Cell Transplants.

  Medicare currently requires that OPOs charge for islet cells using the same computation that is applied to whole organs. This makes islet cells VERY expensive. Consequently, researchers are asking that islet cells be charged by OPOs to researchers at the tissue rate, rather than the organ rate. CMS is not sympathetic to this change.

  7. Representative Dorgan has been very helpful to transplantation over the years and is not returning to Congress in January. It has been proposed that a reception be held for him by the various TX organizations and that he be given an award for his work in transplantation.

  8. Organ trafficing bill – has been introduced but probably won’t go anywhere this session and may or may not be reintroduced next session.

  Next meeting will be 2^nd or 3^rd week of January.
  

  ---

• May 14, 2010 Report by Linda Cheatham, TRIO representative to the Transplant Roundtable:
  

  The Transplant Roundtable met with staff of the Ways and Means Committee, as well as representatives from Camp’s, Kind’s and other reps offices concerning the immunosuppressive bill.
  The Ways and Means staff has been working with CMS at DHHS to craft the language for a bill which would:

  1. Provide immunosuppressive coverage both going forward AND RETROACTIVELY!!!!!!!!!
  2. This bill only applies to kidneys.
  3. This would apply only to people who did not have insurance coverage.
  4. Recipients would pay 70% of the Medicare Part B premium monthly.
  5. Medicare would provide 80% coverage of immunosuppressive’s only, 20% co-pay by recipients.
  6. Anyone who has had a kidney transplant and was covered by Medicare under the 36-month rule would be deemed to be eligible for this program.
  7. DHHS/CMS/DOT wouldn’t be promoting it – it would be up to the transplant community to let people know of this benefit, once it passes.
  Issues:
  1. When to introduce the bill – yet this year or next session in January.
  2. There currently is an immunosuppressive bill in the hopper but it is only for kidney recipients going forward. This bill currently has100 co-sponsors.
  3. Therefore, do they introduce this improved bill this session and have two bills out there and go through the hassle of getting co-sponsors for the new bill.
  How do they explain having two bills on the same subject with people supporting both of them (logistics of getting a bill through and getting sponsors lined up)
  4. Or, do they wait until January, when the current bill would be dead and introduce the new bill then, assuming they would get 100+ co-sponsors for the new bill.
  5. Also, how to pay for this bill beyond the premiums from the recipients?
  
  So, nothing was resolved yesterday, but the fact that the STAFF of Ways and Means Committee are taking the lead on getting this done is very encouraging.
  We weren’t begging them for support; they were asking us what we wanted!
  I shall keep you posted. BTW – TRIO and AAKP were the only patient groups represented. The rest were surgeons, docs, AOPO, diseases groups, etc.
  
  Respectfully submitted,
  Linda Cheatham
  
• Reminder:TRIO supports immunosuppressive coverage for all transplant recipients. Hot off the press, this bill has been introduced with bipartisan support for immunosuppressive drug coverage for kidney transplant recipients. "The Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act" would prevent thousands of Americans under the age of 65 from being cut off from Medicare coverage for drug therapy after 36 months by extending coverage of immunosuppressive drugs for kidney transplant recipients.
Let's send letters to our Senators to support this important bill.

Here is a list of contact info for all Senators:

http://bit.ly/3UAs

Yours sincerely,

Mike Sosna, President

Transplant Recipients International Organization- Long Island Chapter

Chairman, Public Policy- TRIO International

5440 Little Neck Parkway Suite 4H

Little Neck NY 11362

Tel: 516.902.8111

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Website: www.LITRIO.org

Senators Introduce Bill to Extend Transplant Drug Coverage

From Mike Sosna

Source:Virgo Publishing.

http://www.renalbusiness.com/

03/16/2010

WASHINGTON—Assistant Senate Majority Leader Dick Durbin, D-Ill., and Sen. Thad Cochran, R-Miss., have introduced bipartisan legislation to extend immunosuppressive drug coverage for kidney transplant patients. The Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act would assist thousands of Americans under the age of 65 who are being cut off from Medicare payments for drug therapy after 36 months by extending coverage of immunosuppressive drugs for kidney transplant recipients. "Of the 78,000 patients waiting for a kidney transplant those patients lucky enough to undergo a successful transplant should not have to worry about being able to pay for the medication that will reduce the risk of organ rejection," said Durbin. " In 2000, Congress passed legislation that provided older or disabled individuals lifetime coverage for immunosuppressive drugs through Medicare. Today's legislation will extend that coverage to all patients trying to live healthy lives after kidney transplants."

"I am pleased to introduce legislation that will enable end-stage renal disease transplant patients to receive the medications they need to ensure transplants are successful," said Cochran. "This is especially important in states like Mississippi that have a high incidence of kidney failure. A transplant is often the best option for these patients, and this important legislation would ensure that transplant recipients have access to the immunosuppressive drugs needed for full renal health."

According to United Network for Organ Sharing, approximately 28,000 organ transplants were performed last year in the United States. The vast majority of transplants—over 16,000 Americans in 2007—are provided to patients in need of a kidney because they are living with end-stage renal disease. However, for thousands of working Americans who had not yet reached 65 and were not disabled, treatment was cut off after 36 months regardless of their ability to pay for lifesaving therapy that can run more than $1,000 a month.

"The National Kidney Foundation supports this critically important legislation,” said John Davis, National Kidney Foundation CEO. “This bill will ensure that thousands of Americans can maintain the transplants they have, allow thousands more to be transplanted and reduce the need for re-transplants of people who can no longer pay for vital medication and end up back on the waiting list. This legislation is a major first step towards accomplishing the goal of the National Kidney Foundation's END THE WAIT! initiative to find solutions to the organ shortage and eliminate the all-too-long wait for a transplant."

• 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 American 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 This email address is being protected from spambots. You need JavaScript enabled to view it. or phone: 516-902-8111