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END THE WAIT!

A Multi-Faceted Collaborative Initiative to END THE WAIT! for a Kidney Transplant in the U.S. in 10 Years

There is on an ongoing and urgent need to increase the number of organs available for transplantation in the United States. To address this complex problem, the National Kidney Foundation has developed a comprehensive action plan to increase the number of transplants for kidney patients—and to END THE WAIT!

This groundbreaking program will serve as a roadmap to implementing tested and proven strategies that will effectively END THE WAIT! for kidney transplants in 10 years. By collaborating with many organizations, government agencies and individuals, NKF’s END THE WAIT! recommendations will eliminate barriers, institute best practices across the nation, improve the transplant system, cover the cost of donating an organ, reduce regional and ethnic disparities and increase living and deceased donation throughout the United States.

The National Kidney Foundation’s mission has included increasing and improving transplantation for decades, and the NKF continues to carry out programs in education, research and services to fulfill our goal.

This initiative will end the long wait for a transplant that has subjected too many patients to deteriorating health, poor quality of life and even premature death. Our efforts will begin immediately and will continue for years. By working together and focusing on the big picture and real needs of our patients, we will have a dramatic impact on the health of kidney patients across the country.

END THE WAIT! has been officially endorsed by the United Network for Organ Sharing.

NKF’s END THE WAIT! Campaign Gaining Momentum

The National Kidney Foundation’s new END THE WAIT! campaign was launched in late January as a comprehensive action plan designed to end the wait for a kidney transplant in the U.S.

The core of the campaign is a series of 26 specific, far-reaching recommendations. These recommendations will improve transplant outcomes, increase living and deceased donation, provide protections and state-of-the-art care to donors, and improve the transplant system. END THE WAIT! is an ambitious effort that can only be accomplished with collaboration from the entire transplant and donation community, along with government agencies and the efforts of concerned individuals.

Since the END THE WAIT! launch, there has been a great deal of activity with regard to legislative/public policy progress, extensive media coverage, and collaboration with the donation and transplant community.

Media Coverage – END THE WAIT! has received substantial media attention from major newspapers, medical trade publications and television outlets, including USA Today, The New York Times online edition, ABC News, Renal Business Today, Transplant News, American Medical News, NephrOnline, The Chicago Sun-Times, Nephrology Times, The Santa Rosa Press Democrat, The Eau Claire Leader Telegram, Nephrology News & Issues, Midland Daily News and The Miami Herald.

“People Like Us” Advocacy – NKF “People Like Us” advocates participated in two Capitol Hill “fly-ins,” where they met with their members of Congress seeking support for the legislative components of END THE WAIT! “People Like Us” advocates, including people with kidney disease, transplant recipients, living donors and donor family members, participated in over 130 congressional meetings, and have generated nearly 2,800 letters to their Senators and Representatives urging them to support immunosuppressive drug coverage legislation and a living donor tax credit (see details below).

Immunosuppressive Drug Coverage – NKF has met with numerous Members of Congress and hosted a Senate Briefing to push for the "Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009" (S.565/ H.R.1458). This is a key legislative component of the END THE WAIT! campaign to ensure that recipients keep the transplant that they have, reducing the need for second transplants. The legislation would eliminate the 36 month time limit on Medicare coverage of immunosuppressive drugs for kidney transplant recipients who are not aged or disabled. NKF’s “People Like Us” advocates have been active in promoting this effort through the Take Action Network and meetings on Capitol Hill.

Coverage of Living Donor Expenses – NKF has advocated for legislation to ensure that donors are not harmed financially from their donation. The "Living Organ Donor Tax Credit Act of 2009" (H.R.218) would provide a federal tax credit of up to $5,000 for unreimbursed donation-related expenses, including lost wages, for living organ and bone marrow donors. NKF’s “People Like Us” advocates have joined in the effort to pass this legislation through face-to-face meetings on Capitol Hill and letter-writing campaigns.

Living Donor Insurance Protection – NKF supports the Pre-existing Condition Patient Protection Act of 2009 (S.623/ H.R.1558) that would prohibit preexisting condition exclusions in group health plans and in health insurance coverage in the group and individual markets. NKF’s “People Like Us” advocates will be called on to get this legislation passed. The act would apply to living organ donors, ensuring that they are not discriminated against in obtaining and maintaining insurance coverage.

Job Security for Living Donors – NKF has met with Members of Congress to garner support for the "Living Organ Donor Job Security Act" (HR 2776), which would amend the Family and Medical Leave Act of 1993 to allow unpaid leave from work for living donors. This means living donors can get their jobs back after donation, a critical part of the END THE WAIT recommendations.

Funding for Paired Donation Programs – NKF has supported Senator Byron Dorgan (D-ND) in his amendment to the Fiscal Year 2010 Senate Budget Resolution to provide a $10 million increase for organ donation programs at the Health Resources and Services Administration (HRSA). If additional funds are included in the annual appropriations bill for HRSA, they could enable transplant programs to expand opportunities for paired kidney donation. NKF will work to help secure additional funding through the FY 2010 Labor, Health and Human Services, and Education Appropriations Bill.

Collaboration – NKF reached out to key stakeholders to discuss END THE WAIT! and opportunities for collaboration, including numerous Members of Congress; the United Network for Organ Sharing; Transplant Roundtable; the U.S. Health and Human Services’ Health Resources and Services Administration, Office of Minority Health, and Centers for Medicare and Medicaid Services; American Society of Nephrology; American Society of Transplantation; NATCO, The Organization for Transplant Professionals; Scientific Registry of Transplant Recipients; Association of Organ Procurement Organizations; Dialysis Patient Citizens and Kidney Care Partners.

END THE WAIT! has been officially endorsed by the United Network for Organ Sharing.

Next Steps – NKF has convened a Task Force for the END THE WAIT! campaign comprised of an OPO representative, transplant surgeon, nephrologist, donor family member, living donors, transplant recipient, NKF Board members, and other experts in the field. The Task Force members will identify and develop practical approaches to accomplishing the END THE WAIT recommendations through collaboration with other individuals and organizations; legislative and public policy changes; education; and changes in industry, reimbursement, and organizational practice.

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