A subject like organ donation can make people squeamish.
“Many people shy away from talking about organ donation. People think they will jinx themselves,” said Joseph Acocella Jr., 30, discussing barriers to donation during a recent interview. Acocella, the town clerk in Harrison, N.Y., a town about 20 miles south of Mount Kisco, was hoping for a matching kidney donor.
New York state has almost 9,700 people waiting for an organ according to the Organ Procurement and Transplantation Network; so, in a town the size of Mount Kisco, that translates to about eight people. But, the number of people on the transplant waiting list today doesn’t reflect the spectrum of the lives that will be affected in the future: people who will be newly placed on the waiting list; those who will face the decision of whether to donate a family member’s organs; those who will receive a gift of life – often from a complete stranger; and those who will die waiting.
In discussing Lauren’s Law, a bill that was proposed this spring designed to increase the New York organ donor registries, Acocella stated, “I believe if people understand the process and how many lives can be saved, more people will make a decision to openly donate. The biggest thing right now is to promote awareness and how one person can make a difference.” Acocella died on Aug. 11, after approximately two years waiting for a donor.
Lauren’s Law
Stony Point, N.Y. – a town across the Hudson River and about the same size as greater Mount Kisco – is home to Lauren Shields, an 11-year-old girl for whom Lauren’s Law is named. Lauren received a heart transplant when she was 9 after her heart became dangerously enlarged following an acute medical condition.
The proposed bill would require New York driver’s license applicants to choose whether to enroll in the state organ donor registry, selecting from the options of “yes,” “no,” or “not at this time.” Earlier this year, the bill quickly and unanimously passed in the state Senate; however, encountering controversy in the Assembly about whether the legislation could paradoxically reduce donor registrations, it did not come to the floor for a vote.
‘The primary sticking point is around the “no” option. According to Julia Rivera, director of communications with the New York Organ Donor Network, advocacy groups were concerned that people might check the “no” option in haste, without seriously considering their decision and potentially create the unintended effect of fewer new donor registrations.
Discussing the proposed legislation, Assemblyman Robert J. Castelli of District 89, which includes Mount Kisco, said that he sees organ donation as saving lives and he would support the legislation as written, providing it contains “no” option. Castelli said that he prefers optional, rather than mandated, donor questions and referring to people who don’t believe in donation, added, “We don’t want them to feel forced to do something they don’t want to do.”
For those needing a transplant, there is sometimes the option to find a live donor, especially for kidneys, but without a willing donor who is a tissue match, people with organ failure must wait for a an organ from a deceased donor to become available. New York ranks as the third lowest U.S. state with only 15 percent of the population registered to donate according to the National Donor Designation Report Card in April from Donate Life America.
Speaking of how to increase donor awareness, Castelli said, “Education is the key,” noting other societal changes like having a designated driver or wearing seat belts that have occurred in some part due to public awareness and peer pressure. “We need dialogue in the public forum.”
Discussions are expected to resume regarding Lauren’s Law when the Assembly returns. Meanwhile, efforts to increase the organ donor registries still heavily rely on increasing public awareness through other grass roots efforts, including educational outreach and sharing of personal stories.
Grassroots Education
Jeff Graham worked in the apparel industry in management and marketing for more than two decades then later as an insurance agent. His appearance as a 65-year-old energetic retiree gives no hint of the liver transplant he had 15 years ago for sudden liver failure. Graham is now the co-president of the volunteer and advocacy group, Transplant Support Organization, which serves several New York counties, including Westchester.
Graham describes how the organization’s volunteers collaborate with area high schools to deliver a voluntary curriculum on organ donation and transplantation, “We don’t tell students that they should become donors; instead we present the facts and then we encourage them to go home and discuss the matter with their families.” The group has spoken to more than 58,000 students since starting outreach in 2000, according to Graham.
Dawn Marinich has taught health education for 16 years at Fox Lane High School, the public school attended by many Mount Kisco students. Marinich said that Graham’s classroom visits help to dispel myths about organ donation and she describes her students’ reactions as overwhelmingly favorable. “There’s no education before this, they don’t know anything about it,” said Marinich. “Every time, one or two kids come back and say that they talked to their family.”
Art Nelson lives in Mount Kisco and teaches health education at Edgemont High School in Scarsdale. Discussing how Graham’s visits prompt curiosity, he described, “Students usually bring up the topic of organ donation after the visit and sometimes write about the subject in journal exercises.” Nelson shared an amusing personal anecdote about Graham’s encouraging students to talk to their family. One evening, his son, then a sophomore at Fox Lane High School, initiated an impromptu discussion about how a ‘guy’ had visited their class that day and they discussed organ donation; Graham’s work coming home.
Talking to families in advance is important since deciding about organ donation in the midst of shock and grief is difficult, especially if they don’t know if their relative wanted to be a donor. “The more clearly you can make your wishes known, the better off you are,” said Neil Reig, a Mount Kisco health care attorney. Neig advised that people also have a living will, and periodically update written documents, to avoid ambivalence.
Two Sides, One Coin
Growing up in nearby Thornwood, Mary Wu didn’t speak openly about her transplant experience for many years. According to Wu, the reasons might have been her age, her Chinese-American heritage or fear that people would see her differently. She doesn’t remember having her first transplant when she was only 5, but organ failure had left her with physical complications, including problems walking and the need to wear diapers for urinary incontinence. When her first transplant failed after four years, she explained, “No one in my family was a donor match, so I was placed on a national organ waiting list for two years.”
Wu’s second transplant at age 11 made a major difference. She was freed from the dependence of a wheelchair and the need for diapers, but Wu experienced survivor’s guilt. “After I got the second transplant, I couldn’t stop thinking about the donor and her family. I felt so thankful that I could live out my teenage years.”
Seventeen years later, Wu, now 28, works as a chemotherapy scheduler at the Memorial Sloan-Kettering Cancer Center in Sleepy Hollow and receives her nephrology care at the Mount Kisco Medical Group. As an organ donor advocate, Wu radiates poise and confidence as she speaks about her experiences. “Organ transplantation is all about life; people can live on, literally and figuratively,” said Wu with passion. “Someone literally saved my life. It’s not just my story, it’s my family’s story; it is my organ donors family’s story. This is my testament to my organ donor’s family – talking and spreading the word.”
As Wu notes, deceased donors and recipients are on different sides of the same coin: one dies and, in turn, passes along a chance for life to another.
Deborah DeFrancesco, 48, a resident of the adjacent town of Somers, shares the personal experience that changed her perspective about organ donation, “I was on the fence before that. I don’t know if I had signed a donor card.” But eight years ago, her son Benjamin, then 3 years old, died in an accident. She had not spoken to the media about it previously but felt this was time to share their story.
After reaching the hospital, Ben was put on life support but despite rescue efforts, he had suffered brain death. DeFrancesco and her husband then faced the difficult choice of whether to donate Ben’s organs. After meeting a mother who had been through a similar situation, they decided to donate. “It infused the situation with hope,” she explained. The couple later had contact with two of the recipients of Ben’s organs, a child and an elderly woman. DeFrancesco added, “Despite our situation being such a tragedy, it gave life to others.”
Asked what advice DeFrancesco would share with those facing a similar decision, she replied, “Think about it in advance and err on the side of hope instead of fear.”
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