THE GIFT OF LIFE

A LOOK INTO NEW YORK'S ORGAN WAIT LIST

New York State faces a severe organ donor shortage at a time when nearly 10,000 New Yorkers are waiting for the gift of life

Dashia McLeod beat cancer at the age of 4. Her mother caught the bump on her left knee before it was too late.

Six years later, McLeod began to feel fatigued and short of breath constantly. One doctor told her mother it was the flu, another said it was bronchitis, but neither led to answers. She lived like this for a year until one day the gravity of her situation demanded attention. After climbing a set of stairs, McLeod was gasping for life on the corner of 167th Street and River Avenue, her subway stop in the Bronx. Her family took her to the hospital again. The 11-year-old McLeod was diagnosed with heart failure caused by the two years of chemotherapy that originally had helped save her life.

For the next 15 years, McLeod relied on ten types of daily medications, but at 27 her symptoms grew worse. Her doctor at the Columbia University Medical Center – the same place she had received chemotherapy many years before – recommended that she remain in the hospital for tests. On Feb. 7, 2014, McLeod was added to the organ transplant wait list with hopes that one day a doctor would deliver the good news that a heart was available that matched with hers. Three years later, she is still waiting for that call.

“I’m going to Paris after all this,” McLeod says in a cafe close to her apartment in Harlem where she spends most of her time. Doctors recommend that she not travel more than two hours away in case a heart becomes available. “I’m going to put my donor’s name on a love lock and make a promise to take care of their heart as if it was my own.”

McLeod is one of nearly 10,000 people waiting for an organ transplant in New York State, 348 of whom are waiting for a heart. The national average wait time for a heart transplant is over six months, but the wait time can vary on the organ needed. In New York State, someone dies every 18 hours waiting for an organ transplant.

Dashia McLeod/Copyright: Tonic

New York is in the midst of an organ donation crisis. It is currently ranked as the worst state in the country in terms of percentage of residents registered as organ donors. In 2016, only 27.6 percent of residents were registered as donors, falling behind the national average of 54.1 percent, according to Donate Life America, a not-for-profit alliance of national organizations that develops donor education programs and releases state-by-state statistics every quarter.

The lack of registered organ donors in New York State makes wait list especially long because wait time is determined by more than just the type of organ needed. It is also influenced by how sick a patient is, how well an organ matches to a recipient’s body and how many donors are available in the local area compared to the number of patients waiting.

New Yorkers can receive organs from any part of the United States, but patients on the wait list have a much higher chance of receiving an organ available in their region because it makes logistics like transportation of the organ more effective. The United States is divided into 11 geographic regions to make transplantation easier. New York and Western Vermont make up region 9.

Hearts and lungs have the least time to be transplanted so surgeons use the distance in relation to the donor hospital instead of the distance within or between regions. Hearts can survive out of a body for about six hours on average while waiting to be transplanted.

The cause of New York State’s problem is unclear, with reasons ranging from a relatively low number of drivers in New York City surpassing donor registrations at the Department of Motor Vehicles, to problems with how the New York State Department of Health has dealt with the registrations procedures.

“New York has a process problem, not a cultural one,” says Aisha Tator, executive director of the New York Alliance for Donation or NYAD, a coalition of all the organ, eye and tissue recovery organizations in New York State. “New Yorkers are not less altruistic or generous….we have one of the most cumbersome registries.”

New York State has made several efforts to combat the problem including becoming the only state to allow residents to register as donors via the Board of Elections when registering or re-registering to vote. New York’s Department of Health is also preparing to make registering online easier with a new online-based registry scheduled for launch in September.

On Valentine’s Day, the most recent change went into effect. A new law lowered the age requirement for organ donors from 18 to 16. It is the 49th state, however, in the country to adopt such a measure and some registries have no age requirement. Advocates are currently working towards other organ donor-friendly bills and changes on the way the registry is managed by the New York State Department of Health.

“There is a small army fighting for this every day,” says Tator. “It is recognized that more must be done to save lives in New York.”

Mike Sosna, a kidney transplant recipient and Director of Advocacy and Communications for Long Island Transplant Recipients International Organization (LITRIO), can be considered part of this “army”.

Sosna joined LITRIO  several years after receiving his first kidney in 1996. He served as the group’s president from 2003 to 2013, but has since stepped down to become the group’s website director where he shares the group’s trips, achievements and stories about its members.

LITRIO’s meetings and events can vary from going to local high schools to talk to students about organ donation to bringing in doctors to talk about explain what to do after receiving a transplant. Meetings are usually held in Nassau County, Long Island, but the group is trying to expand to the east and have meetings at Stony Brook University. No one at LITRIO gets paid for their work, and Sosna thinks that makes their efforts stand out, but not better than any other group.

Sosna, along with members of the Long Island TRIO and other groups, helped get the Young Adult Enrollment Bill signed into law by Governor Andrew Cuomo on Aug. 17, 2016.

Mike Sosna (center-back) volunteering on LiveOnNY’s Organ Donor Enrollment Day

Prior to this law teen drivers applying for permits and licenses were not able to register as donors and many were not given the option to do so until they were in the process of renewing their license several years later, said James Pardes, Vice President of Marketing and Communications for LiveOnNY, an organ procurement organization dedicated to the recovery of organs and tissue for transplant in the greater New York metropolitan area.

Under the law teenagers who register remain under the supervision of their parents, who can decide whether to allow the donation. When a teen becomes 18 because their registration turns into full consent.

There was a time when everyone in New York had their organ donor decision approved by a next of kin under the state’s former Life Pass It On Registry, which recorded a person’s wish to be a donor, but not their consent.  In 2006, a new law replaced the system with the current Donate Life Registry, which records a person’s legal consent to organ, tissue and eye donation.

Sosna says this transition in 2006 is one of the reasons why New York is last today. Donors who had registered on the Life Pass It On Registry, which began in 1999, did not automatically get transferred to the Donate Life Registry in 2006 – causing countless numbers of registrants to be lost.

“We were late to the table in having a consent registry,” Sosna says. “There are states that started later than us that are more successful than we are.”

There’s a small army fighting for this every day. - Aisha Tator

California did not have any registry prior to 2004, but today it has 44.9 percent of residents registered as organ donors, according the Donate Life America document. California allows its residents to efficiently register as organ donors online. This makes the sign up process quick and easy, unlike that of New York’s registry, Tator from NYAD says. In New York, donors have to print out a form, sign it and mail it the Department of Health if they register through the department’s website.

One of New York’s online portal for organ donation exists on the MyDMV website, but is only accessible to people with a profile already in the DMV system. Tator considers this a problem because New York City has a low number of residents with driver licenses despite being one of the highest populated areas in the state.

In 2014 only 3,577,174 residents of New York City had a license on file out of 8.4 million people in the area. That is less than 43 percent. By comparison, more than 70 percent of about 8 million residents outside the city have driver licenses.

In May 2016 Tator’s non-profit, NYAD, was awarded a state contract to manage and promote the Donate Life Registry. NYAD plans to launch a “new and improved” registry as well as a website that will give New Yorkers access to a user-friendly portal. It is expected to roll out in quarter four of 2017, Tator says.

In February the Living Donor Support Act passed in the Senate Health Committee by a unanimous vote. If the bill becomes law, New York would become the first state to reimburse living donors expenses such as lost wages, travel, childcare, and caretaker costs. The bill currently has 34 co-sponsors in the Assembly, 21 co-sponsors in the Senate and support is growing, Sosna says. Next steps are expected to come before the fall.

A kidney is the most frequently donated organ from a living donor, according to the U.S. Department of Health & Human Services. Yet in 2014 only 32 percent of kidneys across the nation came from living donors, said Josh Morrison, executive director of Waitlist Zero, an organization that educates potential donors and the public about the benefit of being a living donor.

Living donors tend to miss two to three weeks of work if they have an office job or six to eight if their job requires manual labor, Morrison says. This puts living donors who are losing wages in an awkward position since asking for reimbursement from the recipient is taboo and getting paid for being a donor is illegal. “There are some people who would love to save someone’s life, but can’t afford to,” says Morrison.

There are more than 8,000 people in New York State currently waiting for a kidney, including Monica Hardy.

The 52-year-old resident of Schenectady, New York has been waiting for a kidney since she got on the waitlist March 2016.

Hardy suffers from end stage renal disease and relies on a treatment that uses the lining of her abdomen and a cleaning solution to clean her blood.

The treatment, also known as peritoneal dialysis, is effective because it uses the cleaning solution to absorb waste and fluid from her blood, says David K. Klassen, Chief Medical Officer at the United Network for Organ Sharing.

A 2016 study conducted by Waitlist Zero says only one in seven people on the waitlist for a kidney find a living donor. In comparison a new person is added to the waitlist in New York every 2 and a half hours, according to Pardes from LiveOnNY.

If one out of every 10,000 Americans donated each year there would not be a shortage for kidneys, Morrison says.

Monica Hardy (right) visiting Lake George in July 2016 – fourth months after beginning dialysis for her kidney failure
There are some people who would love to save someone’s life, but can’t afford to - Josh Morrison

Hardy’s sister, niece, and three friends have tried to be living donors, but no one has been a match so far. Doctors told Hardy that finding a match would be especially difficult in her case because her body’s defense system rejects 99 percent of the human population.

Regardless, Hardy is hopeful that her time will come for a new organ, but so are the 9,572 people who are currently on the waitlist – including Dashia McLeod.

But hope may be on the way. Despite its low numbers, New York has the fourth fastest growing registry in the country, says Pardes.

The state is also a pioneer in allowing donors to register when they also register to vote. Organ donation education in schools has been more successful in Albany recently and officials are working with the New York State Department of Education to begin teaching kids in public schools about organ donation, Sosna from LITRIO says.

Until these changes come, Dashia McLeod spends her time daydreaming about all the places she will visit once she gets her new heart.

“I know it’s going to come when I least expect it,” McLeod says with a self-assuring smile. “But no one should have to live like this – no one should die waiting.”

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