Please help us get the End Kidney Deaths Act get to the finish line by signing our petition: https://forms.gle/QKSsb9MvgDP11aiM6
Any questions? Email me: Elaine@WaitlistZero.org
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Pass laws to encourage living kidney donation
ActiveGrant
$50,000raised
$50,000funding goal
Longer description of your proposed project
I was a lifelong educator for 33 years, most recently a professor and program director of the Peace Corps Fellows Program at Columbia University. I resigned in March of 2022 to support the passage of legislation that will end the kidney shortage.
As the Director of Waitlist Zero, I am working on four laws that will dissolve some of the barriers to living kidney donation, the gold standard of care for those with kidney failure. The first is the most bold. As a founding member of the Coalition to Modify NOTA, I am in talks with Congressional leaders to champion passing a law to provide all non-directed kidney donors with a refundable $50,000 tax credit over 5 years. This proposal is consistent with the government's history of providing tax credits to encourage behaviors they believe are desirable like home buying and adoption. We are on the verge of introducing this bill in the House. Our community meets monthly and has a multitude of supporters in the transplant field. We have estimated that this bill will save American taxpayers $12 billion by year ten and save thousands more lives.
The second project is passing the Honor Our Living Donors (HOLD) Act that will make far more low income donors able to access reimbursement for lost wages and costs from the federal government. This bill has been introduced in the House by Representatives Obernole and DelBene. I am seeking cosponsorship in the House as well as Senate sponsors.
The third project is an omnibus bill in Colorado sponsored by State Representative Manny Ramirez that aims to increase the number of kidney donations. Donors in Wisconsin have reached out to me to help launch a similar bill.
The fourth project is implementing the Waitlist Zero law entitled the Living Donor Support Act that was passed unanimously in 2022. We are working with the New York State Health Commissioner and stakeholders to make sure the law is implemented by January of 2024. This law will make New York State the most generous state for reimbursing living donors’ expenses and guarantee that all potential transplant candidates will be educated about transplantation. Once the law is in place, I will educate transplant centers and advocacy groups about the reimbursement and education programs.
The plan is to pass the two federal laws and state law during this legislative session that ends in December of 2024.
Describe why you think you're qualified to work on this
I want to live in a country that has a surplus of kidney donors rather than a waitlist of potential recipients that now includes 92,000 Americans. As a lifelong educator for 33 years, I am confident in my persuasion skills, including getting reluctant eighth graders to write long stories and essays when I was a New York City public school teacher. This skill of getting people to do what is optimal translates well in my talks with Congressional members’ staffers.
I led the campaign to pass New York State's historic Living Donor Support Act in 2022, a bill that passed unanimously. Even though I was told by everyone involved that the bill would not pass that year, I was not discouraged. After the bill was signed by the New York Governor, I was told by Frank McCormick, a devoted economist and scholar committed to helping end the kidney shortage, that I have the "secret sauce" ability to convince government leaders that the passage of kidney laws is urgent. He advised me to turn my attention to passing life and cost saving laws on the federal level.
As a non-directed kidney donor, I launched a kidney chain for four people who received kidneys in Georgia, Oklahoma and Washington State. The final recipient on the chain was on the kidney waitlist. After that, I founded the New York City One Kidney Club, Kidneys 4 Strangers, and Vegan Kidney Donors. I lead the Global One Kidney Club and NKDO “Ask Me Anything” meetings. I am an NKDO volunteer kidney donation mentor, and on the NKF's Community Advocacy Committee.
In addition to my willingness to work diligently to help save more lives, I greatly enjoy this work, and I believe my enthusiasm is contagious, raising our likelihood of success.
Other ways I can learn about you
@UrbaneElaine is my personal Twitter. I also run the @waitlistzero and @modifynota sites on Twitter and FB as well as the Modify NOTA page on Threads and Instagram.
How much money do you need?
I am the only paid employee at Waitlist Zero/ Save Lives Now New York (organizations founded by Josh Morrison and Thomas Kelly) with a salary of $75,000. The organization has enough funds to pay me until April of 2024. We are seeking $50,000 in funding that will provide me with a salary through 2024 so that I can work diligently to complete these projects.
Links to any supporting documents or information
http://waitlistzero.org/;https://www.modifynota.org/;
https://shorturl.at/tyIK2;https://shorturl.at/ksvMY;https://www.wsj.com/articles/a-refundable-tax-credit-for-kidney-donation-c64b2de2;https://shorturl.at/ftDFN;https://shorturl.at/jtRY0;https://shorturl.at/kACOY
Estimate your probability of succeeding if you get the amount of money you asked for
The probability of success varies. For the federal bill to provide a refundable tax credit for all non-directed donors, I believe our chance of success is 8 out of 10 because we have so many influential and devoted supporters. Plus the bill will save thousands of lives as well as billions of tax dollars. The bill that will help low income donors has a 5 out of 10 chance of success because it may cost the government money in the long run once more low income donors will qualify when their recipients’ income is no longer determining whether or not they are eligible for reimbursement. For the Colorado bill, I think that a slimmed down version of the omnibus law has a 8 out of 10 chance of passing because Colorado has an active, passionate and organized group of donors who join our biweekly meetings. The Living Donor Support Act’s implementation will depend on whether or not I am working for all of 2024, connecting with organizations and hospitals as well as the media to educate about the law’s benefits and resources.
Elaine Perlman
about 2 months ago
I am pleased to share several updates on the progress of our work to expand living donation and end the kidney shortage.
First, Waitlist Zero’s Honor Our Living Donors (HOLD) Act has successfully passed in February of 2026 and is now federal law. This legislation addresses a major barrier to living kidney donation by fixing the low-income donor reimbursement system, which has prevented many otherwise willing donors from being able to proceed with donation.
While the law’s passage is an important milestone, implementation remains a challenge. Unfortunately, HRSA has been slow to implement the HOLD Act. I am actively working to encourage faster implementation so that donors can benefit from this life-saving policy without unnecessary delay. Delays in both the passage and implementation of policies like these have life or death consequences. It is critical that agencies and staff move with urgency when life-saving solutions are available.
Our experience in New York underscores this point. Waitlist Zero’s New York State Living Donor Support Program is now up and running, and I recently spoke with the two administrators leading the program, Loretta and Samantha. They have conducted educational outreach with every transplant center in New York State, and I will be joining them to lead a webinar with New York State transplant social workers to further support implementation.
The program is already making an impact. More than 120 donors have benefited since its launch in October 2025. Although the law was passed in December 2022 and was originally scheduled to launch on April 1, 2023, donors who donated between April 1, 2023 and October 2025 are eligible for reimbursement.
The New York State Living Donor Support Program is the most generous donor reimbursement program in the country. It covers all eligible costs and lost wages for New Yorkers donating to New Yorkers. For donors earning above $120,000, reimbursement is capped at the $120,000 income level.
Advocacy for the game-changing End Kidney Deaths Act (HR 2687) also continues. The bill currently has 48 listed House cosponsors, with an additional 12 members who have committed to cosponsor but have not yet been formally added. Notably, two doctors, Rep. McCormick, MD and Rep. Van Drew, DDS, are now cosponsors.
A significant obstacle to passage is the need for a Democratic Senator to join Senator Moran as a co-lead. If you have any connections to Democratic Senate offices, I would greatly appreciate your help in making introductions. Please feel free to reach out to me directly at Elaine@waitlistzero.org.
To help get the End Kidney Deaths Act to the finish line, please sign our petition:
https://forms.gle/ZkVZ3wsZV7m3TVuu6
Thank you again for supporting this work and helping advance solutions that save lives.
Elaine Perlman
8 months ago
Progress update
What progress have you made since your last update?
The End Kidney Deaths Act (H.R. 9275) was first introduced in August of 2024. We had 18 cosponsors. The legislation was reintroduced in April of 2025. We have 30 cosponsors so far.
The Honor Our Living Donors Act (H.R. 628/ S.5504) has been reintroduced.
We hosted a Lobby Day in DC on 9/12/24. We will host another Lobby Day in DC on 10/22/25. If you can attend, email me at: Elaine@WaitlistZero.org
What are your next steps?
I have spoken with 530+ Congressional offices. We have until December of 2026 to get the legislation passed. Up to 100,000 lives and $37 in taxes will be saved in ten year. We must get this done.
Is there anything others could help you with?
If you want to help us advocate to end the shortage of transplantable kidneys that kills around 1000 Americans each month, go to EndKidneyDeaths.org and join our team. Please call your House Representatives and Senators about cosponsoring the legislation. Write to me for instructions.
Legislation that saves lives and money include lead pipe replacement, tobacco, and childhood vaccination programs. Please help get pass this much needed and overdue law. Thank You!
Elaine Perlman
about 1 year ago
Progress update
What progress have you made since your last update?
The End Kidney Deaths Act (H.R. 9275) was reintroduced in August of 2024. We had 18 cosponsors. The legislation will be reintroduced in March or April of 2025.
The Honor Our Living Donors Act (H.R. 628/ S.5504) has been reintroduced.
We hosted a Lobby Day in DC on 9/12/24.
What are your next steps?
I have spoken with 500+ Congressional offices. We are hoping to get the End Kidney Deaths Act included in the spring tax package.
Is there anything others could help you with?
If you want to help us advocate to end the shortage of transplantable kidneys that kills around 1000 Americans each month, go to EndKidneyDeaths.org and join our team. Please call your House Representatives and Senators about cosponsoring the legislation.
This is a document that provides the phone numbers of Congressional leaders and the names of the leaders we have not yet met with. Thank You!
Elaine Perlman
about 1 year ago
In 2024, the HOLD Act (H.R. 6020) passed unanimously in the House Health Subcommittee, Energy and Commerce Committee and the House floor. The legislation was included in the end of year package, but cut on the final day. The legislation has been reintroduced by Reps. DelBene and Obernolte.
The End Kidney Deaths Act (H.R. 9275) was introduced in August and had 18 cosponsors. It will be reintroduced shortly. The plan is for the legislation to be included in the spring, 2025 tax package.
Elaine Perlman
over 1 year ago
Progress update
What progress have you made since your last update?
Both the End Kidney Deaths Act and the Honor our Living Donors Act were introduced in the House of Representatives
What are your next steps?
Hosting a Lobby Day in DC on 9/12. Meeting with Congressional leaders' staffers to persuade them to cosponsor the bills.
Is there anything others could help you with?
If you want to help us advocate to end the shortage of transplantable kidneys that kills around 1000 Americans each month, go to EndKidneyDeaths.org and join our team.