Top 7 Donation and Transplantation News Stories in 2013
January 27th, 2014 by Nancy Ryan
In 2013 a wide range of issues relating to Finger Lakes Donor Recovery Network (FLDRN), organ donation and transplantation received media attention on TV, radio, in print media and online.
What were the outstanding stories of 2013? Here’s our selection of the top 7:
Arguably, the list of top stories of 2013 would have to include how Rochester Americans Hall of Famer Gates Orlando finally received his new heart on February 5 after living at the University of Rochester of Medical Center/Strong Memorial Hospital for 10 months connected to an artificial heart.
♥ STORY #1: Amerks Hall of Famer Finally Received His New Heart–and Got to Skate with his Teammates Again
Just two months later, on April 12 during National Donate Life Month, Orlando came to The Blue Cross Arena to help Finger Lakes Donor Recovery Network spread the message about the importance of organ donation.
Incredibly, eight months after his transplant, Orlando took to the ice again! As the Democrat and Chronicle reported, he skated with his old teammates on December 15 before the Amerks alumni defeated a team of Buffalo Sabres alumni.
The D&C couldn’t have described Orlando’s “return” any more effectively: “…Never did a pregame skate have the meaning — or evoke such overwhelming emotions — as the one he took on Sunday evening at Frontier Field. That he was even on the ice wearing his old Rochester Americans sweater No. 17 and experiencing the Frozen Frontier was only because of medical science and organ donation.” Read more
One of the other top stories was the activation of Lauren’s Law. From the first week of October 2013, it became mandatory for New Yorkers who apply for a state driver’s license, learner’s permit or non-driver ID card to answer a question if they wish to be added to the Donate Life Registry.
♥ STORY #2: It’s Now Mandatory for New Yorkers to Answer the DMV Question About Organ Donation
The new law adds the following language to DMV applications:
You must fill out the following section: Would you like to be added to the Donate Life Registry? Check box for ‘yes’ or ‘skip this question.’
The law is sorely needed: Currently, only 22 percent of New Yorkers over the age of 18 are registered organ donors, compared with the nation’s 45 percent average.
As reported in The Wall Street Journal: “Other states have enrollment rates double, triple New York State,” said state Sen. David Carlucci, who sponsored the bill behind this effort, which passed in 2012. New Question for Drivers – Organ Donor (PDF)
♥ STORY #3: Mom of Donor Brian Bettinger on Meeting His Recipients and the Importance of Donation
To conclude National Donate Life Month in April 2013, News Channel 9 WSYR in Syracuse and Central New York interviewed Dianne Freeman, of Eden, Erie County, about her son, Brian Bettinger, an organ and tissue donor.
Brian, who died in 2009, helped 40 people who needed a variety of transplants. More than a year earlier, Brian moved back to New York and when he applied for his driver license, he signed up to be a donor.
During the interview, Dianne revealed what if felt like to meet some of her son’s recipients who were given a second chance at life.
Also featuring in the segment was Rob Kochik, the executive director of Finger Lakes Donor Recovery Network.
♥ STORY #4: After 8 Months, Ithaca Schoolteacher Fred Knewstub Is Still Waiting for a Heart Transplant
On June 14, 2013, Ithaca schoolteacher Fred Knewstub was admitted to the University of Rochester Medical Center/Strong Memorial Hospital suffering from cardiomyopathy, or weakening of the heart muscle. Since then, he has remained hospitalized awaiting a heart transplant.
Determined to raise awareness about organ donation, Mr. Knewstub’s wait for a transplant has been widely reported. For example the headline in the Democrat and Chronicle, August 12, 2013, was: “Trumansburg man becomes donor activist as he awaits heart.”
In a July 24, 2013, in a posting on the URMC website, Finger Lakes Donor Recovery Network Executive Director, Rob Kochik, stated: “Mr. Knewstub represents the many patients who are waiting for the gift of life, which can only be provided by donors and their families.” Read more
♥ STORY #5: AUDIO – 600 Patients Die Each Year in New York State While Waiting for a Transplant
FLDRN’s executive director Rob Kochik was interviewed in August 2013 by Linda Cohen, host of Upstate Medical University’s “HeathLink on Air” radio show. During the interview, which aired August 25 at 9 pm on WRVO Public Media, he discussed the history, process and importance of organ donation.
With hundreds on waiting lists locally for kidneys, livers and hearts, Mr. Kochik spoke about the success rates of transplants and the possibility, at some point in the future, of growing organs so that rejection by the recipient’s body would no longer be a problem.
Citing data that shows around 600 New Yorkers die annually because of the organ shortage, Mr. Kochik shared ways to become an organ donor and the importance of discussing the decision with family members.
♥ STORY #6: New Study Prompts the Question — Should We Sell and Buy Organs?
It is illegal to buy and sell organs in the U.S. However, a study published October 24, 2013, in the Clinical Journal of the American Society of Nephrology suggested that offering $10,000 to living donors would boost the number of available kidneys and save the health care system money. As this Time magazine website article explains, the study was carried out by Canadian researchers.
Taking into consideration the shortage of organ donors in upstate New York, WXXI decided on October 30 to pose this controversial question to local donation and transplantation leaders: Should the sale of organs be legalized?
Dr. Richard Demme, a medical ethicist at the University of Rochester Medical Center, told WXXI legalizing the sale of organs would raise huge ethical issues. Rob Kochik, executive director of Finger Lakes Donor Recovery Network, pointed out financial incentives might be problematic, but changes to the current process need to be made. Read more
♥ STORY #7: Jim Summers, Waiting for a New Heart, Is In it “For the Long Haul”
Forty-eight-year-old Jim Summers, a resident of Hamburg, NY and father of three teenagers, suffered a heart attack in June 2013. Doctors at University of Rochester Medical Center/Strong Memorial Hospital later identified cardiomyopathy.
Mr. Summers joins approximately 350 other New Yorkers who are in need of a new heart.
Just like Fred Knewstub, included in this review of 2013, Mr. Summers spent the December holidays in the hospital. He told the URMC website: “It’s hard to be away from your family for so long.” But he is determined to save his life, whatever it takes: “I’m in this for the long haul and will do what it takes to make it through.”
FLDRN’s Rob Kochik said, “Mr. Summers represents the many patients who are waiting for the gift of life, which can only be provided by donors and their families.”
Mr. Kochik added: “When people make their own personal decision and inform their family, many people are relieved of the burden of making that decision and donors are ensured their wishes will be carried out.” Read more