This story is published in partnership with New York Focus.
Seven thousand New Yorkers need a kidney. At current donation rates, just 1,500 are likely to receive one in the next year. Of the remaining 5,500, around 400 will die. Black New Yorkers, who constitute 18% of the state population, will make up 36% of these deaths.
As a result of low rates of kidney donation, New York has the seventh highest kidney waitlist in the nation per capita. Two bills have been introduced in the state Senate to promote kidney donation: one would fully reimburse the costs of kidney donation, and a second would go a step further by offering kidney donors free lifetime health insurance. Yet despite broad support among New York lawmakers for these measures, proponents have struggled to make kidney donation a legislative priority.
“I think kidney advocacy doesn't garner as much attention as it could,” said Kim Constantinesco, a kidney donor and advocate from Brooklyn. “There isn't a sense of urgency with kidneys compared to other organs.” In the meantime, the supply of available kidneys remains woefully insufficient to meet the demand.
Those whose lives hang in the balance include Vito Ottomanelli, a Bronxville native currently on the waitlist. "My nephrologist tells me it’s a five- to seven-year wait time. I have to go by that. I don’t know what else to go by," he said. Three times a week, four hours at a time, Vito leaves his part time job as an insurance salesman to go to a dialysis center where machines filter out waste products from his blood. The process is emotionally and physically exhausting.
“I’m sitting here in limbo. When am I going to get a kidney?” Ottomanelli told City & State.
Giving kidney donors free health care
Other countries have taken bold steps to encourage kidney donation, and a proposed bill would allow New York to follow suit.
In 2010, Israel began compensating kidney donors up to $10,000 to cover disability, life, and health insurance, as well as a paid weeklong recovery vacation after surgery. Donations increased by 64% the following year. Today, Israel leads the world in living kidney donation, with a rate six times higher than New York. Death from kidney disease has decreased by 17%.
James Skoufis, a Democratic state senator from the Hudson Valley, proposed legislation in 2019 that would move New York in a similar direction by offering free lifetime health insurance to all kidney donors. The bill is currently in the state Senate Health Committee.
“This legislation would ensure that folks who are selfless enough to donate a kidney are provided with the peace of mind that they will never have to worry about health insurance again, and it acts as an incentive for those who may never have considered donation,” Skoufis wrote in an email, adding that the bill would more than pay for itself by reducing dialysis. “The cost of supplying otherwise healthy kidney donors with healthcare for life is negligible when compared to the expense of treating thousands on the waitlist for months or years.”
New York kidney donors agree. “I think of [Israel’s] living donor benefits, and think ‘I wish I had donated over there,’” said Sam Beyda, a sophomore at Columbia University who donated his kidney to a stranger in 2020 – one of just 43 New Yorkers to do so that year.
Living kidney donation is a safe procedure, with risks to the donor similar to an appendectomy. Donors have a marginally higher rate of end-stage renal disease, but since healthier people tend to donate, kidney donors have a higher life expectancy than the average population.
Ed Holowinko, who also donated his kidney to a stranger, has struggled with cataracts in his right eye for the past few years (unrelated to his donation). When asked if free health insurance would have helped him after donating his kidney in an interview, his response was immediate: “Hell yeah. There are not enough of us donors. We need a universal healthcare system. It would be a definite motivation to get more people to donate.”
Data show that removing financial disincentives can significantly increase kidney donation. A study by Firat Bilgel, an economist at Istanbul Okan University, and Brian Galle, a professor of law at Georgetown, found that tax legislation in 2006 to encourage kidney donation in New York increased living kidney donations by 52%. Bilgel said in an email that passing Skoufis’ bill would create “similar, even greater effects.”
At current rates, that would amount to over 250 more kidney donations per year. Since donations from altruistic kidney donors often cause transplant “chains” in which an average of four to six people can get a kidney from one donation, that could mean well over 250 lives saved per year.
Reimbursing kidney donors
The next legislative session will also include a bill that would fully reimburse New York kidney donors for the costs associated with surgery.
The New York State Living Donor Support Act, sponsored by state Sen. Gustavo Rivera, would fully reimburse New Yorkers who donate their kidneys for all costs associated with donation, including lost wages, travel, child and elder care, and costs of medication. A 2018 study found that the median cost of surgery for kidney donors is $1,254 without reimbursement.
Rivera’s bill is currently in the Finance Committee, where it is one of over 500 bills that need approval before heading to the full state Senate for a vote. But because the Finance Committee meets only weekly or biweekly while the state Senate is in session, Rivera’s bill faces significant competition for attention even if no one objects to it.
“There is no opposition to the bill that I am aware of,” Rivera wrote in an email. “The main hurdle is making it a priority for the conference and the will to appropriate funds towards this goal of increasing living donations.” Rivera estimates that his bill would cost New York approximately $3 million each year, but says it would also save the state about $2 million per year by reducing Medicaid costs for dialysis. The federal government, which bears the most of the expenses of dialysis, would save even more.
A 2019 executive order from former President Donald Trump similarly aimed to make living kidney donation financially harmless; however, funding for donor reimbursement remains in limbo. As of 2020, only 8% of living donors received reimbursement, with the average grant being around half of the cost of the average kidney donation.
“The last thing in the world that New York needs is losing a kidney on the Long Island Expressway”
New York is almost dead last in the country in deceased kidney donations per capita, though there have been some improvements in recent years. In 2016, legislation sponsored by former state Sen. Kemp Hannon authorized 16- and 17-year-olds to register as organ donors. The number of eligible donors subsequently increased by nearly 1 million registrants from 2015 (3.86 million) to 2017 (4.8 million).
Last month, Gov. Kathy Hochul signed into law legislation that gives vehicles that transport organs the same traffic privileges as ambulances. Previously, vehicles that transported the organs of accident victims and other recently deceased organ donors had to abide by all traffic laws, such as stopping at red lights. Traffic was sometimes so bad that organ procurers would take public transit instead.
Similar legislation, sponsored by state Sen. Sue Serino, a Republican representing the Hudson Valley, promised to do the same but languished in the state Senate Transport Committee for half a decade. “There was a concern about extra vehicles with lights and sirens,” Serino said in an interview about why the bill was never made a priority. “But lives are on the line. People spend years waiting for organs.”
“The last thing in the world that New York needs is losing a kidney on the Long Island Expressway because they couldn’t get through traffic,” said Aisha Tator, executive director of Donate Life New York State, a nonprofit that manages New York’s kidney registry.
Asked whether Hochul supports further action to shrink the kidney waitlist, deputy press secretary Avi Small suggested the ball is in the legislature’s court. “Governor Hochul was proud to sign legislation earlier this year that supported the heroic actions of organ donors, and will review all additional bills that reach her desk,” he said.
Barriers to new legislation
Despite a lack of opposition, even modest advancements to promote kidney donation have been hard-fought. Hannon was surprised at how difficult it was to push through legislation supporting donation. “If I knew why, I would tell you,” he said. “I was one of the most frustrated on the issue.”
Advocates have cited a lack of attention for kidney donation, resistance to paying for donor reimbursement and worries that donation is controversial in some communities.
“Unfortunately, many serious health issues that affect a smaller number of the population are not discussed in public as often as they should be,” Rivera wrote. “More education is needed so my colleagues – and the public – can better understand and contextualize the dire emergency thousands of our fellow New Yorkers are facing.”
Skoufis cited similar concerns when asked about why his bill was not getting more traction despite a lack of clear resistance. “General awareness [and] familiarity is likely to blame,” he wrote in an email. “If legislators aren’t familiar with the scope of the issue and the dire need for donors, they’re less likely to prioritize moving this bill forward. We need more coverage of the issue.”
Safiya Raheem, the Director of Community and Government Affairs for LiveOnNY, New York’s organ procurement organization, said another barrier to policy is tepid support for donation in certain communities, citing low organ donor rates in the state’s Orthodox Jewish and Asian American populations. Kidney donation raises issues of bodily autonomy, acceptable levels of medical risk and informed consent.
“Incentivizing organ donation is not without controversy,” added Skoufis.
Yet politicians may perceive kidney donation as more divisive than it actually is. A 2019 poll from the Johns Hopkins Carey Business School, found that the majority of Americans supported compensating kidney donors if it led to more lives saved.
Keren Ladin, an assistant professor of public health and community medicine at Tufts University who has written on the ethics of kidney donations, also supports financial reimbursement and free health care for kidney donors. “Reducing disincentives would most benefit those who are structurally marginalized and those with financial barriers to access, but would not go so far as to coerce anyone to donate,” she wrote in an email.
In the meantime, thousands of New Yorkers on dialysis will hope to receive a phone call that a kidney is ready for transplant.
John Young, an instructor at Teachers College, Columbia University, spent two years on dialysis before learning that he’d receive a kidney from a colleague. “I was shocked, dumbfounded,” he recounted in an interview. “She wanted to give me the gift of an improved life, of a renewed life, and did not expect anything back from it, no matter how much I wanted to give back to her. She was extremely selfless. Forever, in my lifetime, I am grateful to her for doing this.”
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