Need an Organ Transplant? Don’t Count on New York

[Clark]

http://www.thirteen.org/metrofocus/news/2011/10/need-an-organ-donation-dont-count-on-new-york/

Need an Organ Transplant? Don’t Count on New York
John Farley

New York may be the biggest city in the country and the best when it comes to a lot of quality of life variables, but you better go elsewhere if you’re looking for a liver. Or a kidney, pancreas or new heart.

Across the U.S., on average, 40 percent of people sign up to donate their organs and tissue when they die. But in New York State, only 15 percent of people are registered donors. In an odd twist, while New York has the third lowest rate of donation in the country, the state has the third highest number of residents on a national waiting list of people needing organ transplants.

In practical terms, that means that every year, only about 1,200 people in New York State receive organ transplants, leaving more than 10,000 others on the waiting list.

Even New York’s neighbor across the Hudson has nearly double the participation: In New Jersey, more than 30 percent of eligible residents are registered donors. The question, is why is New York State such a laggard?

While there is a nationally coordinated waiting list for organ transplants, managed by the United Network for Organ Sharing (UNOS), there is no national list of registered organ donors. Instead, states individually manage the donor registry process, and they do so in myriad ways. These differences are part of what accounts for wide variance in donor participation between states. New York State’s decisions when it comes to managing organ donations also help explain why so many residents wait, possibly in vain, for transplants.

Here’s how organ donation works in New York…except when it doesn’t:

When a possible organ donor dies: When someone dies or is near death, medical personnel inform a regionally based organ procurement organization if viable organs might be available. New York State has four such organizations covering the state. The New York Organ Donor Network covers the New York City metropolitan area and is the largest.

Matching organ donor and transplant recipient: The regional procurement organization then coordinates with the national registry of people awaiting transplants to find recipients for each viable organ.

New York’s regional organ sharing network: In most cases, the organ matching process can only extend to patients seeking a transplant within each state’s federally designated sharing region.(Because time is so critical when it comes to hearts and lungs, the sharing rules are different in those cases.)

New Jersey, for example, is part of an organ sharing region with five other nearby states. But New York’s sharing region includes only one other state, one of the least populated: Vermont. Additionally, Vermont only created its own registry within the last year.

“The registry is a wonderful tool because it’s immediately accessible,” said Jeff Orlowski, CEO of the Center for Donation and Transplant, another New York State organ procurement organization.  

Why does New York State share only with Vermont? Beginning in 1984, when the national waiting list for transplants was created, the federal Health Services and Resource Administration mandated which states would share with which other states. Until 1998, New York did not have any other states in its sharing network. Vermont was originally part of New England’s sharing region, and didn’t join with New York until 1999.

Geography is destiny in a way when it comes to getting an organ because donations go first to transplant recipients who live within a donor’s sharing region.

Because New York has a low rate of donation and Vermont is a small state, there are rarely enough organs to go around. So New York State residents in need of transplants have to wait for the leftover organs from other sharing regions, which by law give priority to those recipients within their own sharing region.

“New York State has advocated for broader sharing of organs beyond state borders,” said  New York State Department of Health spokesperson Jeffrey Gordon in a written statement to MetroFocus. But, he said, “this has been met with opposition” among the other sharing regions.

The process of restructuring the sharing regions involves small victories, rather than dramatic overhauls, because some states benefit from the status quo.

“There’s definitely a movement to move regions to the national level and take away local priority. But there’s two sides to that coin. There are some states that benefit from how current system works, because their waiting lists are lower than New York’s,” said Orlowski.

In order to change organ sharing policy, a sharing region’s board introduces and votes on a change, which the boards of all 10 other sharing regions must then approve. Then the proposed change goes to the federal United Network for Organ Sharing for final approval. So what kinds of changes can be made?

Just last week, New York and Vermont voted to broaden the sharing borders for those awaiting liver transplants.  If the other sharing regions approve the change, the federal government will vote on it in November, explained Orlowski. In 2006, similar changes opened the market for hearts and lungs.


Even beyond the challenges of New York State not being part of a strong organ-sharing region, there are other problems:

New York State’s online organ donation registry is limited: Currently, New Yorkers wanting to become organ donors can fill out a form online, but then that must be printed and mailed. Or, they must go in person to their local Department of Motor Vehicles (DMV) office.

In July, 2010, New York Gov. David Patterson signed the Electronic Signature Act into law, mandating that the New York State Department of Health create a system where people can sign up to become organ donors online.

The problem is that that system still hasn’t been created, which the State Health Department says is due to fiscal constraints and technical challenges.

In contrast to New York State, New Jersey created an electronic signature very quickly after their state legislature passed the NJ Hero Act, a sweeping law that required New Jersey’s Motor Vehicle Commission (the name for New Jersey’s department of motor vehicles) to:

Provide for online donor registry via electronic signature.
Train employees to prompt DMV customers face-to-face to become donors
Train employees to answer customers’ questions about donation.
Require mandatory education about organ donation in all New Jersey public schools.

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