Last year, 278 New Yorkers died waiting for a kidney transplant. In recent years, the toll has been as high as 533. The deaths are a sad but constant presence in a transplant system where the waiting list is roughly six times longer than the list of donors.
A measure in Governor Kathy Hochul’s budget proposal, released last week, aims to boost donations by offering a tax break of up to $10,000 to reimburse donors for the costs associated with their lifesaving gift.
Most people can donate one of their kidneys with low medical risk, but the cost can be a significant barrier. In addition to the procedure itself, donors must take several weeks off work during recovery. No other state has such a reimbursement program for donors, but similar programs in other countries have significantly increased donation rates. Hochul’s proposal could save dozens of lives a year, at a very small cost to the state.
It also wouldn’t be necessary if New York state’s Department of Health had implemented a 2022 law meant to achieve the same goal.
In June 2022, the legislature unanimously passed a bill to reimburse kidney donors for up to $14,000 of donation-related expenses. Hochul signed the bill in December 2022, heralding the opportunity to support the “great[est] gift a New Yorker can give,” and it was supposed to take effect in April 2023.
New York was the first state in the country to pass such a
measure. Donor advocates estimated it could save 100 lives per year,
based on the effects of similar laws in other countries.
Two and a half years later, it has saved zero lives, because the state health department has failed to implement the law.
The law’s sponsor, state Senator Gustavo Rivera, said he’s mystified by the delay.
“It is a law that we have appropriated funds for, and for
some godforsaken reason, the Department of Health doesn’t get off their
tuchus and just put it into effect,” said Rivera, who chaired the
Senate’s health committee from 2018 until this year. “I wish I had an
answer for you, but I don’t.”
The law’s text required the health department to design and
run the program, and the 2023 state budget allocated $2.5 million for
this purpose.
But the department has not even published draft regulations for the program.
Health department spokesperson Cadence Acquaviva said that
the department is working on implementing the law, but did not provide
any timeline for when it might take effect.
“There were few models to work from and many decisions to
make” in implementing the program, Acquaviva said. “It has taken time to
appropriately recruit, hire and orient the robust staffing team needed
to contribute to the build of such a complex program.”
She declined to say how many people the department has hired, or plans to hire, to run the program.
Rivera said that while he supports Hochul’s proposed tax
credit, it isn’t a good replacement for implementing his law — not only
because it offers donors $4,000 less, but also because New Yorkers
considering donation may not be able to wait until tax season to get
reimbursed.
Organ donation advocates have been frustrated with the lack of progress.
“It passed unanimously, the governor signed it, and
everyone gets all the political credit,” said Elaine Perlman, a kidney
donor and executive director of Waitlist Zero, an organization that
promotes kidney donation. “This was not the way it was supposed to go
down.”
The health department has not responded to her questions about implementing the law since summer 2023, Perlman said.
The reimbursement program in Hochul’s budget proposal would
be available to any living organ donor, but would likely be used
overwhelmingly by kidney donors: Kidneys are by far the most-needed
organ for transplants, and represent over 90 percent of donations from
living donors.
Kidneys from living donors last longer, and have a
higher chance of being accepted by the recipient’s immune system, than
kidneys from deceased donors.
“The Governor fully supports making organ donation more
accessible and recognizes that the existing tax deduction does not
always address the full costs of the process, which is why she’s
proposing a new tax credit in this year’s budget,” Hochul spokesperson
Nicolette Simmonds told New York Focus. (The state currently offers a
tax break to organ donors, but it covers only a small fraction of the
costs.)
Understaffing may be to blame for the delays. The health
department has shrunk by over 350 employees since 2020, leaving more
work for the staff that remain.
Or the culprit could be institutional culture. In Albany,
state agencies have a reputation for dragging their feet when it comes
to laws that they didn’t devise, to the extent that legislators joke
about withholding state employees’ pay until they act.
If that’s the case, Rivera isn’t sympathetic. “Tough luck. It got signed by the governor, so let’s get it popping,” he said.