New York’s organ donor registry is failing.
Just 15 percent of the eligible people have signed up to donate their organs upon death. Only two states — Vermont and Texas — do worse.
New Yorkers wait longer for organs than people in states with better-run registries, according to surgeons and donor advocates.
This state has one of the longest average wait times for kidney transplants: around five years. And the nation’s longest wait for a kidney and a pancreas: 996 days.
If New York could improve to the national average of 40 percent participation, the number of donors could increase from around 400 a year to 1,200. Each new donor carries the power to save a life, cure blindness and restore limbs.
One of the biggest reasons so few New Yorkers donate their organs and so many patients miss out on life-saving transplants? New York state government.
New York is one of three states in which the state health department controls the donor registry. (The rest are run by private nonprofit agencies or state motor vehicle departments.)
This crucial public health function is tied to driver’s licenses: 97 percent of registered donors sign up when they get their license.
Other states have embraced well-accepted policies that make people face the issue: You’re going to die. Why not save someone else?
But New York makes it easy to avoid the issue. It makes it tough to sign up. So people don’t. And state government has resisted the simple approaches that nudge people to become donors.
Last year, legislators thought they ended what everyone in the organ donor community said was an embarrassment: Donors couldn’t sign up online, even though there’s a website with an electronic form. A donor still had to mail a signed form after filling everything out online.
The governor signed the law making it a completely online process almost a year ago. But the state health department has done nothing to make it happen. It says it doesn’t have the money for a system that would recognize electronic signatures.
Over at the Department of Motor Vehicles, they’re in no hurry to help, either.
Officials are leery of doing anything that will back up lines of customers. In other states, DMV clerks answer questions about their organ donor registries and offer information. In New York, the DMV turned down an advocacy group’s request to have clerks hand out pamphlets about the registry.
Dianne Freeman knows firsthand why it matters. She was with her adult son, Brian Bettinger, when he checked off the box to be an organ donor on his DMV form. While they waited at the Madison County DMV, she remembers the two of them talking about how important it is to register. And they wondered why other people don’t do it.
Bettinger died a little more than a year later of a heart attack. He was 39. His kidneys, corneas and tissue went to other people.
“He felt, as we all did, that this is something that most people are able to do,” Freeman said. “It’s such a shame if you don’t.”
Passing the blame
Public health researchers, transplant surgeons, organ donor advocates and the head of transplant outreach for the federal government say that moving New York’s government out of the organ donor registry business would improve dying New Yorkers’ chances of getting the transplants they need.
Trying to get even simple things done means navigating through two state agencies that seem to blame each other.
“You have the Department of Health saying if the DMV did a better job in encouraging and promoting enrollment, we would have better rates,” said Ellen Hollander, executive director of theNew York Alliance for Donation. “Then you have the DMV saying, when you ask them to improve the process, that this is not part of our core mission.”
Hollander’s group was rejected when it asked clerks to hand out pamphlets in the state-run DMV offices. In county-run DMV offices, clerks are happy to help, Hollander said.
Jackie McGinnis, a spokeswoman for the state DMV, said if clerks handed out the brochures, it would inevitably result in a conversation, which would increase wait times. She pointed to the other help from DMV, such as allowing groups to pass out literature during Organ Donation Awareness Month. And DMV includes an organ donor flier in some mailings.
DMV will be forced to become more involved if a measure called Lauren’s Law passes. It was passed by the state Senate earlier this month on 11-year-old Lauren Shields’ birthday. She received a heart transplant a year ago.
It would change the DMV form, which now has one box asking if the applicant would like to join the registry. If the law passes the Assembly and is signed by the governor, the form would have two boxes: “yes,” or “no, not right now.”
DMV clerks would not be able to accept an application unless one of those boxes was checked. People could no longer duck the question.
The health department’s explanation of why the online registry is not up and running illustrates the critics’ frustration. According to spokesman Jeffrey Hammond:
• He couldn’t say how much the change would cost.
• Whatever the cost is, the state cannot afford it.
• There’s a plan to modernize, but he doesn’t know when the state will act.
Tom Gay, whose company (Inetz) designed and manages privately run organ donation registries for 13 states, said it would cost at most $30,000 a month to do the electronic signature.
The health department has an annual budget of $58 billion. According to See Through New York, a government watchdog website, 463 of its employees made more than $100,000 last year.
Time to privatize?
Jeff Orlowski, CEO of the Albany Center for Donation and Transplant, said his group and others in New York have been talking to the state about the possibility of turning over operation of the registry to a private agency.
“If it were operated privately, it might be easier to make change,” Orlowski said.
Dr. Sander Florman, a transplant surgeon and director of the Recanati/Miller Transplantation Institute at The Mount Sinai Medical Center in New York City, said he is ashamed to say he’s from New York when he goes to national conferences and the discussion turns to wait times for organ donation.
“They say, ‘That’s interesting that you have more people waiting, more people dying on the waiting list. But isn’t it true that you have the worst performing organ donor registry in the country?’” Florman said. “It’s very embarrassing.”
Florman said state government should step aside.
“Let an organization that is specialized in this and dedicated to this run it,” Florman said.
Such a change made the difference in Utah. The state barely had a registry before 2002. Now, it has one of the best performers — 72 percent of the people eligible have signed up.
Tracy Schmidt runs the registry from his offices as CEO of the Intermountain Donor Services in Salt Lake City. The nonprofit organization, which already arranged all of the organ donations in the state, asked the state if it could take over the registry in 2002.
Schmidt’s organization won a $1 million federal grant. He hired a web company to maintain the database and the online registry. And then he hired another company to make sure the data was right and weed out dead donors and people who have moved out of state. The data services cost about $1,000 a month.
A few years after taking over his state’s registry, Schmidt’s group began running Idaho’s, too. Its signup rate is 53 percent.
Best states hit 70 percent
Mary Ganikos, a federal official encouraging organ-donor signups, said government often slows progress for donor registries.
The U.S. Health Resources and Human Services Administration has given New York organizations $14 million for organ donation outreach and education over the past decade. And it paid for Utah’s change from public to private.
“The more coordinating you have to do, the slower things move,” said Ganikos, chief of public and professional education for the transplant division. “It’s just another organization that has to be involved. Just setting up meetings takes time.”
Utah’s registry is one of those run by Inetz. Gay, the company’s chief technology officer, said he’s been talking to New York organ donation advocates about the potential of taking over here, too.
Among Gay’s clients are some of the best performing registries: Utah, Washington State and Oregon all enroll more than 70 percent of the potential population. Inetz also operates in Florida, where the private agencies that oversee organ transplants became frustrated with the slowness of government control.
Gay said he’s seen how donor registration rates go up once private agencies take over. They have more passion and are able to do things easier than government. The data can be mined, for instance, to see if certain DMV offices are performing poorly or certain demographic groups are declining to sign up.
With government in charge, it’s harder to get that data, Gay said.
“We don’t need $250,000 or legislation to do it,” he said.
Today, 18 people across the country will die waiting for organs.
How to become an organ donorYou can enroll in New York’s Donate Life registry one of two ways:
• Sign the donor box on your driver’s license or nondriver ID card or on the license renewal form. (Older licenses ask for signatures from witnesses, but you don’t need those. The law has been changed.)
• Get a form online (This requires mailing a signed consent form.)