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New York fund created to increase organ donation grew to $1 million, but was never used

Helen Irving, president of the New York Organ

Helen Irving, president of the New York Organ Donor Network, poses for a portrait at the Organ Donor Network's Manhattan office on Thursday, December 18, 2014. Credit: Charles Eckert

A special fund created to help New York overcome its chronic shortage of human organs for transplant has grown to nearly $1 million, but state officials have failed to spend any of the money, government records show.

Lawmakers established the fund for money the state began getting in 2004 from renewals of custom automobile license plates that promoted organ donation. The fund was to be used to help finance projects, like marketing or education campaigns, designed to spur more New Yorkers to register their wish to donate the so-called gift of life when they die.

Between 2004 and 2014, state officials never tapped the fund, records obtained by Newsday show. Last year, the State Legislature passed a bill that gave permission for part of the fund to be used, but so far, the money has gone unspent, said a spokesman for the state comptroller's office.

The trust fund, now called the Donate Life Trust Fund, remained untapped even as New York has struggled to boost the availability of lifesaving organs for transplant.

In 2013, more than 500 New Yorkers died while waiting for transplants and more than 10,000 were on the waiting list for organs.

Arthur Caplan, director of the medical ethics division at the New York University Langone Medical Center, says the state's failure to use the trust fund for so many years is "relatively scandalous given the dismal rate of organ donors."

"As one who has studied the need for organ donors, all I can say is it seems very odd because legislators periodically talk about the need to improve organ donations," Caplan said.

Caplan called for a new state task force that would devise a modern and cohesive infrastructure for improving the procurement of transplant organs.

New York has the second-lowest organ donor registration record among all the states -- only Vermont ranked lower, according to a 2014 Excellus BlueCross BlueShield report.

Twenty-two percent of New York's adults are registered organ donors compared with 48 percent of all American adults.

Nassau County's registration rate is even lower at 20 percent, while Suffolk's rate is 25 percent.

Faced with the state's donor scarcity, state Sen. Kemp Hannon (R-Garden City) sponsored a bill in 2013 that would release about $715,000 from the trust fund to a not-for-profit group experienced in promoting eye, tissue and organ donation.

The bill required whatever group is selected to use the money for promotional and educational efforts aimed at attracting donors.

The State Senate passed the bill but the Assembly didn't bring it to a vote.

Then, last January, Gov. Andrew M. Cuomo highlighted the need for more organ donors in his State of the State address.

Finally, in April, the State Legislature passed Hannon's bill.


'A lack of focus'

Hannon, chairman of the Senate Health Committee, said the group did not know about the failure to use the fund, but in the 2014-15 budget cycle, "we think we appropriately made up for what [money] was lying around."

Hannon said there was "a lack of focus on this in the Health Department. Then came the recession. The Health Department lost about a third of its staff. The money was accumulating."

A Health Department spokesman said the agency hadn't used the money in the past because lawmakers failed to appropriate it.

New York began putting money into the trust fund in 2004 when the state unveiled a new custom motor vehicle license plate as a way to raise money to encourage organ and tissue donation. The Life Pass It On Trust Fund -- now called the Donate Life Trust Fund -- began with $3,046 in receipts for the 2004-05 fiscal year.

When drivers renewed their custom organ donation plates, $20 from the fees they paid went into the trust fund.

The lack of registered organ donors in the state has affected not only those waiting for transplants but also organizations charged with improving donation rates and retrieving organs.

Last March, the month before the legislature passed Hannon's bill, federal officials -- during an unannounced visit to the New York Organ Donor Network at its Manhattan headquarters -- told the network that the rate of organ donation in the metropolitan area needed to improve.

The officials from the Centers for Medicare and Medicaid Services warned that the network was in danger of losing its federal certification, records show.

The network is the federally designated group that recovers organs for transplant in the metropolitan area, including Long Island, and promotes the need for donation.

During the meeting, executives at the donor network confirmed to the federal officials that they had already been informed in October 2013 about donation problems.

In some cases, when federal officials decertify an organ donor network, another group takes over its operations.

Helen Irving, president of the donor network, said the network then hired three new staff members to devise organ and tissue donation education programs for health care workers.

The new staffers also conducted forums with hospital staff about how to deal with families concerning donation of their relatives' organs and make them feel at ease.

Also, the network hired a full-time medical director and launched a public education campaign about organ donation, Irving said.

By July, federal officials had recertified the network.


State asked for registry aid

Part of the problem in New York is that when people die without registering with the state to consent to having their organs transplanted upon death, family members can prevent their organs from being taken.

The names of people who register are kept in an electronic database, or registry.

The state Health Department oversees both the registry and the trust fund.

Last August, as a result of Hannon's bill, the Health Department issued a request for proposals from groups interested in obtaining a state contract to run the registry and use part of the trust fund money to pay for projects that would increase the number of people who decide to donate their organs.

According to the request, the state would transfer about $1.4 million -- including $715,000 from the trust fund -- to the winning bidder over five years.

The Health Department indicated the contract would be awarded by Dec. 1, but a contractor has not yet been selected.

The New York Alliance for Donation -- a three-person operation based in upstate Troy -- has submitted a proposal to the Health Department, said Aisha Tator, the alliance's executive director.

A Health Department spokesman said he could not say whether any other groups had submitted proposals.

"We're committed to making sure this is a successful venture," Tator said. "We need to start treating organ donation like the public health crisis that it is."

The alliance spent about $100,000 over the past two years to hire an Albany lobbyist, attorney James Lytle, to contact lawmakers about the importance of Hannon's bill and determine the status of the trust fund.

"There had been some mystery attached to what happened to the funds in the trust fund," Lytle said. "We didn't get the information right away."

Lytle said "New York's performance has been worrisome" but pointed to some steps taken to improve organ donations.

For example, people can register to donate organs when they register to vote or they can fill out forms contained in various brochures and mail them to the state.

There is also a state Health Department website that allows people to register as donors. But a form must be printed and mailed back to the state.

Tator said that in Texas, it takes about a minute to go online and register as an organ donor.

In New York, she said, it takes about 15 minutes to fill out an online form that must then be printed and mailed. Some people, Tator said, might be too impatient to do that.

People can also register when they go to a Department of Motor Vehicles office to apply for a license or state ID card, or when they renew a license.


Targeting sign-up snags

But with New York's 8-year period for license renewals, it's a long time between opportunities to register as a donor at the DMV.

In some states, 16-year-olds who get junior driver's licenses are asked whether they want to be organ donors. That doesn't happen in New York, Tator said.

New York also sends 16-year-old drivers a new license automatically when they turn 18 but doesn't ask them about organ donation, Tator said.

And at age 21, the state sends a regular license to the same drivers, again with no questions about organ donation.

Then there is what Tator calls "the New York City conundrum." With all the taxis, buses and subways available in New York City, many of its residents don't drive and are unlikely to have any contact at all with the DMV, where they might be asked about organ donations.

If the alliance wins the contract to oversee much of the trust fund money and the registry, Tator plans to focus on reaching all potential donors.

She said the state needs a donor registration website that is "user-friendly, efficient and transparent."

However, Caplan said the state should abandon its patchwork of transplant agencies and groups and come up with a new plan to boost organ donation.

"The state ought not go on repeating efforts that don't work," Caplan said.