New York Bill Would Improve Transplant Education

TV Segment on HBO’s Last Week Tonight with John Oliver demonstrates need for Living Donor Support Act

NEW YORK—John Oliver of HBO’s Last Week Tonight recently released a segment on the terrible state of transplant education in America’s dialysis clinics, who treat transplant as a way to lose a customer rather than a way to save a patient. Oliver’s producers even found dialysis educators actively discouraging transplant, a dramatically superior treatment that is also much more affordable for patients, the government, and private insurers.

As a result of this poor education, as many as 40% of patients who could use a transplant go unlisted. According to a study by Cleveland Clinic Professor Jesse Schold, these unlisted patients are disproportionately people of color, working class, and lacking in private health insurance.

If passed, New York’s Living Donor Support Act would fix this problem by requiring all patients eligible for transplant to receive best-in-class, state-approved transplant education materials from their doctor. Doing so would remove the perverse incentive dialysis providers face to inadequately educate their patients about transplant. The bill would also reimburse live donor lost wages and other expenses, removing a critical barrier to transplantation.

New York is in particular need of this legislation, because the state is currently 50th in the country in organ donor registration. Last year, 850 New Yorkers on the waitlist died or became too sick to transplant, more than all the homicides in the state. That number doesn’t include all of the patients who could use a transplant but never made it on the list because of inadequate education.

Polling finds major misconceptions about live organ donation, with 40% of New Yorkers believing the risk of death during donor surgery is greater than 1 in 20. (It is actually 1 in 3,300). Two thirds of New Yorkers strongly agree they’d donate to a family member, but only one in seven patients on the waitlist receive a live donor transplant.

Clearly more needs to be done to educate New Yorkers about transplant, and the Living Donor Support Act is a critical first step.

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Bill Background: Introduced by Assemblyman Gottfried and Senator Hannon, the Living Donor Support Act would pay live organ donors to reimburse expenses such as lost wages, travel, childcare, and caretaker costs while also guaranteeing transplant education to all medically eligible patients.

“Living organ donors make a major sacrifice to save another’s life,” said Senator Kemp Hannon, Chair of the Senate Health Committee and sponsor of the legislation.  “As New York works to increase the rate of organ donation and save lives, the Organ Donor Support Act is an important proposal to support and encourage living donation, and I am proud and I am proud the Senate included this proposal in its one house budget.”

“Medical and other costs should not prevent anyone from becoming a living donor,” said Assembly Health Committee Chair Richard N. Gottfried, sponsor of the bill.  “New York faces a shortage of organs for transplantation, and we should support and protect those who choose to donate.”

“This legislation represents a sensible and effective way to improve New York’s organ donor registry base. It’s a positive step following my newly approved law to permit 16 and 17 year olds to register their intent to join the state’s donor registry when they apply for a driver’s license. This bill would create financial incentives and increase public understanding and awareness about organ donation” said Assistant Speaker Felix W. Ortiz.

Deputy Majority Leader of the Senate, John DeFrancisco said, “This legislation would help to increase living donation in our state by removing certain financial barriers to donors who are New York residents, while further educating the public about live donor transplantation.

Broad Legislative Support: In both houses, the bill has the bipartisan support of key members of leadership, including co-sponsorship in the Senate by Majority Leader John Flanagan and Deputy Majority Leader John DeFrancisco and in the Assembly by Assistant Speaker Felix Ortiz, Speaker Pro Tem Jeffrion Aubry,Vivian Cook, Chair of the Committee on Standing Committees, Deputy Speaker Pro Tem Nick Perry, Deputy Majority Leader Phil Ramos, Majority Whip William Colton, and Marcos Crespo, Chair of the Puerto Rican and Hispanic Task Force. In total, 23 senators and 54 members of the Assembly have sponsored the legislation, more than a third of the members of the respective chambers.

Endorsements: Institutions who have come out in public support of this legislation include: Columbia University Medical Center, Greater New York Hospital Association, Kidney Connection of Western New York, LiveOn NY, Mt. Sinai Health Systems, Montefiore, Northeast Kidney Foundation, NYU Langone Medical Center, University of Rochester Medical Center, The Rogosin Institute, 1199SEIU United Healthcare Workers East, Stony Brook Medicine, SUNY Downstate Medical Center, Transplant Recipients International Organization—Long Island, Transplant Recipients International Organization—Manhattan, Transplant Support Organization (Westchester), and Waitlist Zero.

Greater New York Hospital Association Executive Vice-President David Rich said, ““With one of the nation’s lowest organ donation rates, New York State struggles with a severe shortage of transplantable organs. As a tragic result, a New Yorker dies every 18 hours waiting for an organ transplant. This important legislation would help increase the supply of available organs in the State by reducing the burden of becoming a living organ donor.”

Chantal Onelien, champion for living organ donation andFamily Advisory Council member for the Kravis Children’s Hospital at Mount Sinai, said, “”Imagine a world where organ transplantation for children and adults didn’t exist. You would advocate wholeheartedly for the option to donate life. You would fight for it. Right now that option doesn’t exist if you don’t have the resources to donate, which is why this law is urgently needed. New Yorkers deserve the opportunity to become a living organ donor without the fear of financial restraints.”

The National Transplant Crisis: This bill is intended to spearhead other state and eventually national efforts to support live organ donation. Kidney donor and founder of Waitlist Zero, Josh Morrison, said, “Currently, over a hundred thousand Americans are awaiting an organ transplant, and each year the demand for transplants exceeds supply by more than twenty thousand. The waiting list is twice as long as it was at the turn of the century, but fewer people became live organ donors in 2016 than did in 2001. If just one in ten thousand Americans donated each year, there would be no shortage. Clearly, efforts to make transplants easier to ask for and easier to give are urgently necessary.”

Protecting Vulnerable New Yorkers: Most New Yorkers who need an organ need kidneys, and kidney failure is most often a result of factors like diabetes and high blood pressure. As such it disproportionately affects patients of lower socioeconomic status. African Americans are three times as likely to be on the waiting list as Caucasians. Researchers have found that live organ donors spend on average $4,400 in lost wages and other out-of-pocket costs. As a result, the wealthy donate more than the poor.

Dr. Devon John, Chair of Transplantation Surgery and Interim Chair of General Surgery at SUNY-Downstate, said, “I firmly believe that this bill will be a great addition to disadvantaged communities, particularly communities of color and those of immigrant status. These individuals have limited resources and often are not privileged to leave work and donate an organ to family members with the luxury of paid leave. This would be a significant policy change, which may help reduce the disparities and low rates of organ transplantation affecting people of color.”

Cost-EffectivenessAt an anticipated annual cost of $3 million dollars, the bill is expected to increase live donor transplantation by 20%, creating an additional hundred transplants in New York each year. This cost of $30,000 per life saved represents an enormous impact. Rocky Lotito, a Good Samaritan kidney donor who recently started a chain of twelve transplants at Weill-Cornell Medical Center, said, “If New York’s legislators value the life of a transplant recipient the same as the cost of a new car, they will pass this legislation.”

Cost-Savings: The alternative to transplantation are expensive dialysis treatments, coverage for which is guaranteed by Medicare for all Americans (including those under 65). As a result, a recent study by Ojo, Held, and Roberts, found that each kidney transplant saves the government $145,000, implying this legislation would save taxpayers a net of $115 million over the next ten years.

Polling Results: A New York state survey conducted by the firm Brand Planning on behalf of Waitlist Zero has found strong support for policies to increase living organ donation:

  • 84% of New Yorkers in favor of reimbursing lost wages and other expenses of donation with only 1% opposed.
  • 96% believed live donors should receive at least one year of free health insurance after donating
    • 66% felt donors should receive free lifetime health insurance.
  • 57% believed live organ donors should be paid money in exchange for donation their organs, while only 16% were opposed.

The full poll is available for download here.

Living Donation Working GroupThe law was introduced with the support of the New York Living Donation Working Group, a collaborative effort of stakeholders throughout the New York area, including hospitals, nonprofits, and patient organizations. The group produced a white paper and model legislation in December, which can be downloaded here.

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Helen Irving, the President and CEO of LiveON NY, said, “Passage of this law should lead to more lives saved via organ donation in New York, and would be another example of New York taking significant steps forward in the area of organ donation and transplantation.  New York is 50th of 50 with regard to the percentage of residents registered as organ donors, but what is encouraging is that New York is responding with innovation, legislation such as this, and other activity that will lead to a better future.”

Dr. Bruce Gelb, Director of Kidney Transplantation at NYU Transplant Institute, said, “This is important legislation to help the health and well being of New Yorkers.  This Bill will help assure a person’s financial status does not become a factor in being able to donate an organ to a loved one.  Reimbursing costs and preventing financial losses not otherwise covered in the donation process is without a doubt the right thing to do for someone donating a lifesaving organ.”

Sedicah Powell, who donated her kidney to help her mother two years ago, said, “In 2015, I participated in a 4-member paired exchange, which included my mother, and a mother-son pair. It was one of the best and most meaningful decisions in my life. The transplant changed each of our lives for the better, and gave us all a better perspective on the gift of life. But in donating, I paid for numerous daily expenses that were difficult to cover since I was unable to work during that time. I’m glad I was able to afford it and save someone’s life, but I’m very happy to see that in the future New Yorker’s won’t have to choose between their financial security and saving a life.”

Mike Sosna, Kidney Transplant Recipient and Director of Advocacy and Communications for Long Island Transplant Recipients International Organization, said, ” It’s exceedingly important to remove unnecessary challenges, barriers and financial costs incurred by a living donor while saving a life. With this legislation, New York State will lead the nation with respect to limiting these costs incurred by donating and will allow for the reimbursement of some of the living donor’s medical expenses and/or childcare costs and lost wages.

“As a recipient of a kidney from a courageous living donor, I have learned that it’s likely that many more people would be willing to consider living donation if it weren’t for logistical challenges and financial disincentives added to an already significant decision to donate. I commend everyone involved in moving this legislation forward so that the financial status of a person willing to help is not the deciding factor with regard to that person’s decision to save a life.”

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Senator Catharine Young (R,C,I- 57th District) said, “Organ donation is the most precious gift someone can give to another person. Increasing organ donation participation will help New Yorkers live longer, healthier lives. I am proud to co-sponsor this bill to eliminate barriers and encourage more living donors.”

Assemblyman Michael A. Blake: “Organ donors provide life-saving service to to a remarkable number of New Yorkers and people around the world.  The Living Donation Support Act provides much needed support for individuals who sacrifice a part of themselves for others.  This act would provide reimbursements from the state to compensate for lost wages, the value of vacation days, travel and lodging, medical costs associated with the surgery, child care expenses as well as expenses for the elderly. The bill also provides an awareness to better inform people of the facts of living donations. The passage of this bill would drastically increase the rights of living donors and help support them as they save the lives of their fellow New Yorkers.”

Potential organ donors should not have to consider medical costs and other financial burdens associated with live organ donations,” said Senator Patrick M. Gallivan. “The New York State Living Donor Support Act will save lives by helping to increase the number of organ donations across the state and expanding existing organ and tissue donation education programs.”

“This legislation will significantly increase the number of people who volunteer to donate organs by reimbursing and covering some of the costs involved in donating. No matter who you are, or what your circumstances are, if you are ever in need of an organ, chances are you’ll have to wait to get one,” said Assemblyman Jeffrey Dinowitz. “With this legislation, we can encourage people to donate organs and increase the number of lives saved from organ donations.”

Senator Jesse Hamilton said, ““Finishing fiftieth in the nation on any public health measure deserve urgent attention. New York’s fiftieth place spot with regard to organ donor registration vividly demonstrates the need for this Living Donor Support Act. That abysmal result, fiftieth in the nation, leads to waiting list deaths in New York more than a third higher than the national average. We must do better by our transplant community. As policymakers, we need to act decisively to remove obstacles to organ donation and deliver care to patients on waitlists. I commend my colleagues for bringing this important legislation forward, I am proud to serve as a co-sponsor, and I look forward to the Living Donor Support Act’s passage.”

Assemblywoman Aileen Gunther said, “No one should have to suffer financially for giving the gift of life.  As a registered nurse, I’m proud to be a co-sponsor of the Living Donor Support Act. This bill will help support living donors and will boost New York’s low donation rate.”

Assemblywoman Ellen Jaffee said, ““We cannot ask the 10,000 New Yorkers – men, women and children – who are waiting for a life-saving transplant to keep waiting. We in the Legislature cannot wait. We must do everything we can to increase organ donation rates in NY State through legislation, advocacy, and education. By reimbursing  living organ donors lost wages and equalizing access to healthcarethe Living Donor Support Act, (A5475/S2498) that I have co-sponsored, will raise awareness and encourage New Yorkers to take action, make a difference, sign the New York State Donate Life Registry and save a life.”

“I am pleased to be a co-sponsor of the Living Donor Support Act,” stated Assemblywoman Crystal D. Peoples-Stokes. “Organ Donation and Transplant Services are issues that are near and dear to me, affecting thousands of families here in New York State, and millions beyond. I applaud my colleagues that are co-sponsors of this bill, as it provides financial support for individuals donating organs to those in need. I believe the biggest impact that this legislation will have is on promoting advocacy and proper education for donors, recipients, and their respective families. I look forward to supporting this bill when it comes up for a vote.”


Assemblyman Fred W. Thiele, Jr. (I, D, WF,WE – Sag Harbor) stated, “I am pleased to join with Assemblyman Gottfried in sponsoring the “New York State Living Donor Support Act”.  I am hopeful that the Assembly is successful in advancing this significant piece of legislation that would increase the number of living donations and save more lives.”

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