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?
One donor can potentially save eight lives but geography is destiny in a way when it comes to getting an organ because donations go first to transplant recipients within a federally designated sharing region.
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.
- This map shows the 11 organ sharing regions as designated by the federal government. New York and Vermont constitute region nine, but because they both have low rates of donation, there are never enough organs for those waiting for transplants. Image courtesy of the Department of Health and Human Services.
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.
You have to make donation as easy as possible for people.
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.
“You have to make donation as easy as possible for people,” said Jessica Melore, senior education and programs manager for the New Jersey Organ and Tissue Sharing Network, and an organ transplant recipient herself. She praises her state’s online donor registry: “It allows us to register people right there and then. And this way people don’t have to go back to motor vehicles and pay an $11 change fee.”
The New York State Department of Health told MetroFocus that the new health commissioner, Dr. Nirav Shah, is prioritizing online donor registry via the electronic signature. On Jul. 29, the Department of Health issued a press release declaring a new partnership among federal, state and local organizations to create stronger educational initiatives related to organ donation and online registration via electronic signature. When exactly will that happen? “We are working to implement the system as soon as possible,” the Department of Health told MetroFocus.
It should be noted that nationally, even in states that offer electronic signatures, 96 percent of those who register as a donor do so in person at their state department of motor vehicles.
Who should manage the donor registry? There are three ways that states manage their donor registries.
The most common way to manage organ donation is through a state’s department of motor vehicles. That’s how New Jersey does it.
The second way to manage organ donation is through a state’s health department. New York is one of only three states that handles donor registry this way. But the New York State Department of Health’s history in this area — including their slow-response to the electronic signature law — has drawn considerable complaints.
Some argue that it makes more sense for the DMV to manage the donor registry, since it’s most commonly the place where people sign up.
On the flipside, as a recent Syracuse Post-Standard article explored, requiring the DMV to manage the registry could burden an already busy agency and create longer lines at local DMVs, especially if New York were to pass legislation like New Jersey’s Hero Act, which requires DMV employees to prompt people to register as donors and to answer people’s questions about organ donation.
The New York State Department of Motor Vehicles did not return a request for comment from MetroFocus.
The third way states manage organ donors is through a privatized donor registry. Privatizing the donor registry streamlines the process, removing some of the government bureaucracy, often with good results. Several states with private registries, including Utah, Washington and Oregon, have donation rates over 70 percent, nearly double the national average.
But the cause-and-effect isn’t clear because the states with privatized donor registries are also less populated, which means their systems are less structurally complex to manage, and their residents are generally healthier. For example, Washington and Utah are among the top 13 healthiest states, reported Business Insider.
Last May, the Syracuse Post-Standard reported that at least one of New York State’s organ procurement organizations has been discussing the privatization option.
Part of that discussion about privatizing organ donation is surely centered on the ethical issues. When Florida was considering privatizing its donor registry in 2007, which it ultimately did, Kenneth Goodman, director of the Florida Bioethics Network said, “Entrepreneurial goals may be good for cars and potato chips, but not for liver and lungs,” reported Florida’s the Star-Banner. Goodman added that once an agency is “incentivized by something besides saving lives, there’s a cause for concern.”
The challenge of supply and demand for organs in urban communities: The issue of population health is hugely connected to why New York State’s waiting list is so long and its donor registration low: poverty, education level and cultural factors in the New York City metropolitan area.
Of the 10,133 people in New York State currently awaiting organs, according to the U.S. Department of Health and Humans Services, the majority live in New York City.
That’s because the city has an unusually high number of people suffering from diabetes, Hepatitis C, cardiac arrest and other diseases that are often at least partially caused and aggravated by poverty and the daily stresses of urban life, according to Julia Rivera, communications director for the New York Organ Donor Network.
Michele Davis, regional manager for the U.S. Health Department noted in a written statement that “due to high rates of diabetes and high blood pressure, African Americans and other minorities require organ transplants at higher rates than that of other ethnic groups.”
“City life is very difficult for people. We have a constant movement of new immigrants and waves of individuals. It’s a combo of access to healthcare insurance and quality of life, and how we manage them,” Rivera explained.
So that means demand in certain urban communities is high…and supply is low.
Rivera also said that cultural issues can deter certain communities from donating. “In some Asian communities, especially Chinese, there are concerns about black markets,” Rivera said.
In fact, a whopping 50 percent of people on the national waiting list are racial or ethnic minorities, according to the New York State Health Department.
The challenges are so grave that the U.S. Health Department of designated Aug. 1 as National Minority Donor Awareness Day.
“By becoming a donor you can help decrease disparities within communities of color,” said Davis.
The role of education in boosting organ donation: Education is a critical component to boosting participation and reducing the waiting list.
In New Jersey, the Hero Act forced public schools to adopt a curriculum to teach about how organ donation works. But even without a similar law in New York, Rivera believes the people are becoming more willing to learn about donation.
“After 9/11, there was more of an understanding of vulnerability. Not just our own vulnerability as human beings, but the idea that as life changes you can just be living and something can happen to you. Now people are more willing to listen to that conversation,” said Rivera.
The New York Organ Donor Network runs donor registration drives and uses social media to encourage young people to become donors.
Specific organ advocacy groups host their own events to raise awareness and funds. Just this past weekend, the National Kidney Foundation hosted its 10th annual New York City Kidney Walk.
Perhaps New York State’s new health education partnerships and initiatives, specifically in minority and low-income communities, will have a strong positive effect. Time will tell, but for many of the 10,133 people currently on the waiting list in New York state, time is in short supply.
Here’s how to become an organ donor in New York, New Jersey or Connecticut