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TRIO Legislative Action News

Update of Dec 16, 2011:

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
Legislative Initiative and TRIO Public Policy UPDATE Nov 2011....


For detail wording on each bill, click on the titles:

H.R. 2969: Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011

S. 1454: Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011


There is a new bill introduced in the United States Senate. What follows is some information with respect to S. 1454: Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011-112th Congress: 2011-2012.

S. 1454: A bill to amend title XVIII of the Social Security Act to provide for extended months of Medicare coverage of immunosuppressive drugs for kidney transplant patients and other renal dialysis provisions.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011

TRIO has worked hard to forward the goal of extending Medicare coverage of immunosuppressive drugs for kidney transplant recipients beyond the current 36 months post transplant. It was hoped that this would be part of any health care reform legislation that was passed. It was not, however, part of the health care reform legislation that was passed. Although this legislation was included in the health bill approved by the House of Representatives in November of 2009, the bill and this important legislation was not contained in the Senate bill in December nor in the final legislation signed by the President in March of 2010. However, the original immunosuppressive bills (S. 565, H.R. 1458) remain active and I would ask you to please help by asking your Representatives and Senators to become cosponsors if they are not yet cosponsors. Please contact your Senators and Representative to urge them to cosponsor the Senate bill- S. 565 and The House Of Representatives bill- H.R. 1458, respectively.
Senate Amdt. 3102 to H.R. 3590- 2010 failed to be included in the bill signed by President Obama even though it was included in the original House bill.


Background:

Prior to 2000, immunosuppressive drug coverage was limited to 36 months following a transplant for all kidney transplant recipients. In the Beneficiary Improvement and Protection Act of 2000, Congress eliminated the 36-month limit for transplant recipients who had a Medicare transplant, if they are eligible for Medicare based on age or disability.

Recipients would pay the individual portion of the Part B premium, and Medicare would be extended beyond 36 months only for recipients who lack other health care coverage. All other health care needs for transplant recipients who are not Medicare aged or disabled would remain subject to the current ESRD 36 month coverage limit.


Organ transplant recipients must take immunosuppressive medications for the life of the transplant to help prevent the body from rejecting the organ. HR 1458 would extend immunosuppressive drug coverage for Medicare-eligible kidney transplant recipients for the life of the transplant. They would not necessarily have access to other parts of Medicare, but this would ensure that they could retain Part B access to these expensive medications. Currently, Medicare pays for most kidney transplants but covers medications for only 36 months post-transplant as part of the Medicare ESRD benefit.

Many kidney patients lose access to Immunosuppressive medications. In a study of 1,000 kidney transplant recipients, graft loss more than doubled when Medicare coverage for anti-rejection drugs ended.This is associated with a significant cost to Medicare and the taxpayers because patients who lose transplanted kidneys must return to dialysis or seek another transplant. Furthermore, once a transplanted kidney no longer works, the patient’s risk for death is nine times as large!

In a survey by the United Network for Organ Sharing and the American Society of Transplantation, 70% of transplant centers report that patients have extreme or very serious problems paying for their medications, and 68% of kidney transplant deaths or graft failures are possibly the result of lack of access to anti-rejection medications.

According to the most recent report from the United States Renal Data System, Medicare spends an average of $77,000 per year indefinitely dialyzing patients with kidney failure. However, it spends $106,000 the first year after transplant and an average of $17,000 per year thereafter, including the cost of Immunosuppressive medications. It thus makes financial sense for Medicare to remove the 36-month coverage limitation for Immunosuppressive medications.

In the most recent report, we discussed an important bill introduced in the United States Senate. Today, I'm pleased to announce that a companion bill has been introduced in the House of Representatives with bipartisan support and co-sponsorship. In the House of Representatives, Michael C. Burgess, M.D. (R–Texas) and Congressman Ron Kind (D–Wisconsin) introduced the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This legislation, H.R. 2969 will allow individuals who are eligible for immunosuppressive drugs under Medicare Part B to continue to receive their vital treatment past the 36-month cutoff. Without these medications, transplant recipients are at risk to lose their transplanted kidneys which has too often happened.

Since 1972, Medicare has covered people with irreversible kidney failure, or end-stage renal disease (ESRD). There is no Medicare time limit for a dialysis patient. However, kidney transplant recipients lose their Medicare coverage 36 months after a transplant. Extending immunosuppressive coverage beyond the 36-month limit would decrease the risk of organ failure due to patients neglecting to take the immunosuppressants following loss of immunosuppressive coverage. Furthermore, it has been found that transplant recipients have a higher quality of life, and are more likely to return to work than dialysis patients.

As was announced in the most recent public policy report, U.S. Senators Dick Durbin (D–Illinois), Thad Cochran (R–Mississippi) and Scott Brown (R–Massachusetts) have introduced companion legislation in the Senate.

- Mike Sosna

TRIO Public Policy Committee Chairman


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And more info:

Sponsor: Sen. Richard Durbin [D-IL]
Status: This bill is in the first step in the legislative process.
Source: Senator Dick Durbin's Office
July 29, 2011
DURBIN, COCHRAN INTRODUCE LEGISLATION TO HELP ORGAN TRANSPLANT PATIENTS
WASHINGTON, DC – U.S. Senators Dick Durbin (D-IL), Thad Cochran (R-MS), and Scott Brown (R-MA) today introduced bipartisan legislation to improve the quality of life for people with kidney disease. The 2011 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would assist thousands of Americans under the age of 65 who are being cut off from Medicare after 36 months by extending coverage of immunosuppressive drugs for kidney transplant recipients. Also cosponsoring today’s legislation were U.S. Senators Daniel Inouye (D-HI), Chuck Schumer (D-NY), Carl Levin (D-MI) and Ben Cardin (D-MD). Congressman Michael Burgess, M.D. and Congressman Ron Kind are planning to introduce companion legislation in the House of Representatives within the next few weeks.

“Of the 89,000 patients waiting for an 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.”

“Our legislation is intended to help people with end-stage renal disease and offset long-term costs to the government for treatment of this condition. Kidney transplants are often the best option for these patients, and this bill would help in providing the immunosuppressive drugs needed to make transplants successful. In states like Mississippi with high incidences of diabetes and related kidney failures, extending this coverage to younger patients could mean improved health and quality of life,” Cochran said.
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 16,800 Americans in 2010 – are provided to patients in need of a kidney because they are living with End Stage Renal Disease, ESRD, or kidney failure. 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.

“Extending coverage beyond 36 months for those suffering from end stage renal disease is just common sense. It’s good policy, it saves money, but most importantly, it saves lives,” said Brown. “No one should lose a transplant because they are not able to pay for the drugs to maintain it.”

“This legislation is a commonsense approach to both maximizing taxpayer money while increasing the quality of life for kidney transplant recipients,” said Dr. Burgess who is the Vice Chair of the House Energy and Commerce Committee’s Subcommittee on Health and Chairman of the Congressional Health Care Caucus. “Without this legislation, transplant recipients face the potential of losing access to their immunosuppressive medications after 36 months which places them at a higher risk for losing their new kidney and being placed back on dialysis – a situation that has a proven higher cost to taxpayers and does not improve the quality of life.”

“Health care costs are the fasting growing area of spending in the national budget,” said Rep. Kind. “We should be doing everything we can to improve patient care while getting these costs under control and this legislation is a great step in the right direction. Providing kidney transplant patients access to the medication to ensure the success of their transplant helps keep health care costs down – by decreasing the need for further dialysis and the likelihood of a re-transplant - and the quality of life up – so that patients won’t have to worry about how they will pay for the medicine to maintain their health.”

The effects of the disparity in coverage are evidenced in the hypothetical case of a young woman. A 26 year old woman living with ESRD would have lifelong dialysis covered by Medicare at $77,500/year. Medicare would cover the cost of a transplant at $110,000/transplant. The immunosuppressive drugs she would need to ensure the organ is not rejected by her body are only covered for 36 months and the drugs are far less costly at $10,000 to $20,000/year. Without immunosuppressive drugs to keep kidney transplants from being rejected, many patients find themselves right back where they started: in need of a kidney. This circular cycle of care is costing taxpayers a lot of money and putting thousands of lives at risk.


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Here is the companion bill in the House Of Representatives:
Status: Referred to House Ways and Means

Burgess, Kind Introduce Legislation to Protect Kidney Transplant Recipients

Washington, D.C. – Last night, Congressman Michael C. Burgess, M.D. (R–Texas) and Congressman Ron Kind (D–Wisconsin) introduced the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This legislation, H.R. 2969 will allow individuals who are eligible for immunosuppressive drugs under Medicare Part B to continue to receive their vital treatment past the 36-month cutoff. Without these drugs, transplant recipients are at risk to lose their transplanted kidneys – which too often happens.

“Although now more mainstream than heroic, renal transplantation offers end stage renal disease patients an alternative to a lifetime of dialysis,” said Congressman Michael C. Burgess, M.D. who is the Vice Chair of the House Energy and Commerce Committee’s Subcommittee on Health and Chairman of the Congressional Health Care Caucus. “How incredibly cruel then, that the gravest threat to their newly acquired kidney is an incoherent federal policy that denies coverage for anti-rejection drugs after 36 months and a costlier return to patients and the Medicare system to dialysis.”

Since 1972, Medicare has covered people with irreversible kidney failure, or end-stage renal disease (ESRD). There is no Medicare time limit for a dialysis patient. However, kidney transplant recipients lose their Medicare coverage 36 months after a transplant. Extending immunosuppressive coverage beyond the 36-month limit would decrease the risk of organ failure due to patients neglecting to take the immunosuppressants following loss of immunosuppressive coverage. Furthermore, transplant recipients have a higher quality of life, and are more likely to return to work than dialysis patients.

“Health care costs are the fasting growing area of spending in the national budget,” said Rep. Kind. “We should be doing everything we can to improve patient care while getting these costs under control and this legislation is a great step in the right direction. Providing kidney transplant patients access to the medication to ensure the success of their transplant helps keep health care costs down – by decreasing the need for further dialysis and the likelihood of a re-transplant - and the quality of life up – so that patients won’t have to worry about how they will pay for the medicine to maintain their health.”

"On behalf of the American Society of Transplantation (AST), representing the majority of professionals engaged in the field of organ transplantation, I strongly applaud Congressmen Burgess (R-TX) and Kind (D-WI) for their leadership in introducing the ‘Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011’," said Dr. Bob Gaston, President of the American Society of Transplantation (AST). “This bipartisan and bicameral legislation will ensure that kidney recipients are able to maintain their life-saving donor organ. This is a common sense approach that will save both lives and federal funds by preventing organ rejection, re-transplantation and more costly therapies already covered under Medicare. The transplant community and the patient population that it serves are extremely grateful to Congressmen Burgess and Kind for their steadfast commitment to this issue and the lives that will be saved as the consequence of their efforts."

"The National Kidney Foundation commends Representatives Burgess and Kind for their leadership on this critically important legislation. This bill, coupled with the companion legislation by Senators Durbin and Cochran, will ensure that thousands of Americans can keep their transplants, allow thousands more to be transplanted, and reduce the need for re-transplants of people who can no longer pay for vital medication and who end up back on dialysis and the transplant waiting list. This legislation is a major first step towards achieving the goal of the National Kidney Foundations END THE WAIT! initiative to find solutions to the organ shortage and eliminate the all-too-long wait for a transplant," said Lynda Szczech, MD, National Kidney Foundation President.

U.S. Senators Dick Durbin (D–Illinois), Thad Cochran (R–Mississippi) and Scott Brown (R–Massachusetts) have introduced companion legislation in their respective chambers.


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Take action now:
Reach out to your legislators and express your support of the important legislation above.  The life you save may be yours or that of others around the country with your actions.

One way of supporting this legislation would be to read and act on the following petition request:

Petition to Congress – Support Anti-Rejection Drug Coverage Bill

Posted on 31. Oct, 2011 by in Legislative Initiatives

After receiving a kidney transplant, a patient must take immunosuppressive drugs for the rest of his/her life, at a cost of $19,000 per year. Without these drugs, the body will reject the organ and the patient will have to go on dialysis.
Under current law, Medicare covers these medication costs for three years only, but will cover much higher dialysis costs – $77,000 per year – indefinitely.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, currently in the U.S. Senate and House of Representatives, will extend that Medicare coverage for the rest of the patient’s life. This will help patients to keep their kidney transplants, shorten the transplant waiting list, and lower Medicare costs. Both Democrats and Republicans in Congress support this measure.
It is good for transplant patients, good for taxpayers, and good for the national budget.
Please sign the petition at http://www.americantransplantfoundation.org/2011/10/petition-to-congress-support-anti-rejection-drug-coverage-bill/ to urge your Members of Congress to support this legislation. You must include your zip code so we can send the petition to your Representative and Senators.
Thank you for your support.
For a one-page summary of the bill, click here.

Organizations (including TRIO)  that support this legislation include:

  • American Transplant Foundation
  • National Kidney Foundation (NKF)
  • American Society of Transplantation (AST)
  • American Society of Transplant Surgeons (ASTS)
  • United Network for Organ Sharing (UNOS)
  • American Society of Nephrology (ASN)
  • American Society of Pediatric Nephrology (ASPN)
  • Association of Organ Procurement Organizations (AOPO)
  • Renal Physicians Association (RPA)
  • American Association of Tissue Banks (AATB)
  • Polycystic Kidney Disease – PKD Foundation (PKD)
  • Transplant Recipients International Organization (TRIO)
  • Renal Support Network (RSN)
  • American Association for the Study of Liver Diseases (AASLD)
  • NATCO, The Organization for Transplant Professionals
  • Texas Transplantation Society
  • Juvenile Diabetes Research Foundation (JDRF)
  • Eye Bank Association of America (EBAA)
  • Dialysis Patient Citizens (DPC)
  • American Association of Kidney Patients (AAKP)

Transplant Recipients International Organization, Inc.

7055 Heritage Hunt DR, #307
Gainesville VA 20155

800-TRIO-386  (800-874-6386)
info@trioweb.org

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