Patients Need Kidneys. A Law to Boost Donations Is Stuck in Limbo.

The health department has blown past deadlines to implement legislation encouraging lifesaving transplants — along with at least five other laws.

Sam Mellins and Ellie Gonzales   ·   July 28, 2023
Ambulances in front of the NY State Capitol Building in Albany.
The health department has missed deadlines on at least six laws that passed last year. | NYS Department of Health

Hundreds of New Yorkers die each year waiting for a kidney. New York has one of the longest waitlists in the country: Nearly 7,000 people currently need a transplant, but annual donations fluctuate between 1,000 and 2,000.

In an effort to boost New York’s low donation rate, the state legislature unanimously passed a law last year to reimburse kidney and liver donors for their medical bills and lost wages during recovery from surgery. “Living organ donors are true heroes, and with this legislation, we are taking meaningful steps to support their sacrifice and save lives,” Governor Kathy Hochul said when she signed the first-in-the-nation bill.

The law was supposed to take effect in April. But the state Department of Health has blown past the legal deadline for implementing it — along with at least five other laws.

The health department didn’t respond to multiple requests for comment. Elaine Perlman, director of the kidney transplant advocacy group Waitlist Zero, said department staff told her at a meeting last month that there’s no implementation date — or even a timeline for draft regulations — currently on the books.

“They said that they think it could be done by the end of the year, but I’m a bit skeptical that that’s the case,” she added.

Hochul waited until December 2022 to sign the law, nearly six months after it passed. When she did, she asked legislators to pass subsequent tweaks, including one ensuring the state wouldn’t be responsible for costs that could be paid by insurance companies. Legislators passed those amendments in March 2023, nine months after the law first passed. And until the final state budget allocated nearly $2.5 million for the reimbursement program in April, the health department didn’t know how much money it would be given to run it.

Even accounting for these delays, the bill’s supporters say the process has been frustratingly slow. “There’s no ability to move quickly, where quickly means less than six months after the budget is passed,” said Josh Morrison, co-founder of Waitlist Zero. “It’s a life or death issue, but there’s no clear timeline on making this happen.”

The delay is unfortunate but “pretty typical,” said former state Assembly Health Committee Chair Richard Gottfried, who sponsored the bill.

“State agencies tend to implement their own ideas at a reasonable pace. Ideas that come from somebody else, like the legislature, can often take years and years to implement,” said Gottfried, who served in the Assembly for 52 years before retiring in 2022.

A New York Focus review of legislation found that the health department has missed deadlines on implementing at least five other laws that passed last year, such as conducting a statewide campaign to promote hospice services and requiring adult care facilities to document more demographic information.

Lawmakers have gotten so used to the problem that they joke about passing laws to withhold agency heads’ paychecks until they get programs up and running, Gottfried said.

“After you’ve been through this cycle a few times you sort of take it for granted. But that’s certainly not the way it should be,” he added.

Gottfried said that more public pressure is key to reducing delays. Blair Horner, legislative director of the New York Public Interest Research Group, said that boosting staff levels and reorganizing government bureaucracies would help too.

The delay on the kidney bill could cost lives. Supporters estimate the program will save 100 lives every year, based on research measuring the effects of financial incentives in other countries.

New York is the first state to enact such a program. The federal government does reimburse costs for some organ donations, but its program has much narrower eligibility restrictions and offers less than half of the up to $14,000 authorized by New York’s law.

In the next few weeks, Waitlist Zero and other groups that support the program plan to send a letter to the health department urging speedier action.

“My plan is that once it’s implemented, I’m going to talk to all transplant centers and try to talk to dialysis clinics and get the word out as much as I can,” Perlman said. “Just so that everyone knows that we’re now the best state in the country for donating.”

Sam Mellins is senior reporter at New York Focus, which he has been a part of since launch day. His reporting has also appeared in The San Francisco Chronicle, The Intercept, THE CITY, and The Nation. 
Ellie Gonzales is a student at the University of Chicago and an editorial intern at New York Focus.
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