New York State CampaignThe Living Organ Donor Support Act
Model Transplant Support Legislation
Live donor transplants should be easy to ask for and easy to give. But right now, many barriers stand in the way. Donors must pay thousands of dollars in lost wages and caretaker expenses, just to save someone else’s life. Patients who need a transplant receive little education or help with publicizing their search. Donor health is left unprotected.
The New York Living Organ Donor Support Act would help fix all these problems: by paying donor expenses, protecting donor health, and improving education of patients, their families, and the public. For an expected annual cost of $3 million dollars, experts say the bill would create $11.5M in taxpayer savings and lead to more than 100 transplants per year.
In addition, Waitlist Zero has lead a working group of New York institutions to develop a set of model proposals that would offer donors a year of free health insurance post-surgery, improve transparency for patients with kidney disease in choosing their doctors, and increase public awareness of donation. These proposals have broad support among the public, with polls finding that 84% of New Yorkers support paying organ donor lost wages, 96% support providing donors health insurance, and 90% think better education is needed. Trusted advocates for organ donation have endorsed the bill, including Mt. Sinai Hospital, NYU-Langone Medical Center, the Northeast Kidney Foundation, LiveOn NY and the Greater New York Hospital Association..
“I understand the ethics behind not ‘paying’ for an organ, but I do believe that many donors would consider donating if their expenses were completely covered”
— Amy, donor to her husband
Covering Financial Costs
Covering financial costs of donation such as lost wages, travel, and childcare.
“This donation cost me around $7,000. If you donate a kidney you should be out nothing but a kidney.”
— Jessica, donor to her cousin
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Currently, kidney donors are responsible for any lost wages, travel, and childcare expenses that stem from their surgery. That’s not fair! Many donors lose a month’s worth of wages or more because of their act of kindness. Average expenses total more than $4,000. No one generous enough to donate a kidney should have to pay money to save a life. Kidney donation saves the state money by decreasing Medicaid costs and increasing tax revenue from healthy workers. The states should reimburse donors for the costs of their donation.
Luckily, setting up a system of reimbursement should not be hard. The federally funded National Living Donor Assistance Center already exists to reimburse travel expenses for donors beneath a certain income threshold. It could easily handle the task of reimbursing lost wages and childcare expenses as well.
The Living Organ Donor Support Act calls for comprehensive reimbursement of donor expenses. Making our organ donors whole is not just the right thing to do: it will also ensure that patients have access to medical care regardless of their income. Right now, richer people donate at higher rates even though poorer people are more likely to need transplants. Failing to support donors hurts our most vulnerable citizens, and the LORDS Act would change that.
“I have to have regular blood tests to check my kidney function. I can’t always afford to do it. I wish follow-up care for donors could be decreased in cost.”
— Wendy, donor to father
Guaranteed Donor Health Insurance
The Living Organ Donor Support Act would ensure donors have health insurance for the year after surgery and help cover any longer term issues from donation
“I had a great experience, but my insurance doesn’t completely cover all the tests my doctor likes to do now that I only have one kidney.”
— Rori, donor to dad
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Guaranteed Donor Health Insurance
Most kidney donors experience no serious complications from surgery, but some do. While transplant recipient health insurance covers some of the costs for some of the time, donors should never have to worry about needing insurance related to their donation and not having it. That’s why we want to reimburse a year’s worth of health insurance for any donors who lack it prior to donating.
79% of New Yorkers say health concerns make them less likely to donate. Treating donors with respect means protecting their health. Since donors are healthier than average and most already have insurance, this would be an affordable way to make donation easier.
The Act would also create voluntary expert guidance for long-term insurance for living organ donors. This would encourage insurers to keep costs for donors down and ensure unforeseen consequences don’t bankrupt donors.
“I didn’t have much of an idea what to expect. Education was something we both desperately desired to receive, but did not. Medical professionals need to really talk to donor and recipient – not at them or over their heads.”
— AJ, donor to mother
Independent Transplant Education
Needing an organ transplant is hard. Discussing live organ donation with your family can be even harder. It can be shameful to talk about needing someone to make a sacrifice to save your life.
This Act would create a statewide website where patients could post profiles and direct people who are interested in their health. It would ensure that every patient who needs a transplant receives high-quality transplant education.
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Seeking a live donor is hard. One study found that 75% of recipients felt inadequately educated about live donation. And those were the lucky ones. Our bill would help educate patients, their families, and the public to better inform people about live donation and help give patients a voice when they need it.
That means a statewide website accessible to all communities that provides easy-to-understand, authoritative information about donation. Only a third of New Yorkers have heard of live donation in the last year, and the average New Yorker thinks the donor surgery is 150 times more dangerous than it actually is. The website will help educate people and also make it easy for patients to post their need and tell their story.
As many as 40% of patients with kidney failure who could use a transplant don’t make it to the waiting list. Providing all patients the best in transplant education could increase living donation rates by more than 50% . That’s why we want each state to require every patient who will be medically eligible for transplant to receive high-quality transplant education materials, to make sure everyone has access to transplant.
Currently, the only education these patients are required to receive is from dialysis providers, but these providers are not specialized in educating about transplant, lose money whenever a patient is transplanted, and cannot provide education concerning preemptive transplants obtained prior to dialysis, which provide the best health outcomes.