Good afternoon KAC! Good news! We have officially picked up eleven new sponsors for the Living Donor Protection Act (H.R. 4616/S2584). This is a great win for us all, given all the hard work that you have put into our advocacy efforts on this bill. For those of you in these districts (and states), I will be sending along a line to use in social media posts to thank them, as a constituent, for signing onto this bill as a sponsor.
This is only the first step though! We need to keep pushing our Representatives and Senators who have not signed onto this bill.
ANDREW W. FULLERTON Government Relations Manager T: 202.244.7900 ext 709 5335 Wisconsin Ave NW
Suite 300
Washington, DC 20015 www.kidney.org JIM'S NOTE: YOU CAN HELP PERSUADE OTHERS TO CO-SPONSOR, SIGN AND SHARE! https://www.change.org/p/support-hr-4616-s-2584-the-living-donor-protection-act
She's been on the liver transplant waiting list for 14 years, her condition worsening. She can no longer eat bananas, peanuts or pineapples. She uses a walker to get around.
"I don't know how to read anymore. I used to be a bookkeeper — I can't add anymore," said Sintich, a slight, frail woman of 49 who labors when she speaks. "I have trouble with speech. I can't pronounce words right. I never knew the liver was so important."
Then she met a woman who encouraged her to tell her story on social media. Sintich is the opposite of tech savvy — her son equipped her with a personal Facebook page just this past December — but she decided to give it a shot anyway.
Since setting up her page in January, the Lansing grandmother already has received several queries from people interested in donating (donors give a portion of their liver, which regenerates in a matter of months). While the majority were from foreigners offering to sell their livers, a practice illegal in the United States, one came from a woman in Michigan with the same blood type.
As social media proliferates, people on transplant waiting lists are increasingly turning to sites like Facebook and Twitter to find living donors. Social media allows users to broadcast their stories to strangers across the world, at a time when 120,000 Americans await lifesaving transplants.
Dr. Deepak Mital, director of the kidney transplant program at Advocate Christ Medical Center in Oak Lawn, said more and more people on the list at his facility have been taking to social media.
He noted that all living donors have to go through a rigorous evaluation process, meeting with a social worker and psychologist, to ensure they're doing it for the right reasons.
"We apply the same standards to donors who come through social media as those who came through personal contact," he said. "You have to make sure there was no coercion, no financial exchange and that this is all on the up and up."
+10
Gary resident Jim Myers receives dialysis while looking at social media pages dedicated to connecting organ donors with recipients. John J. Watkins, The Times
When Jim Myers, of Gary, started dialysis about five years ago, he was dismayed by all the suffering he saw around him, by the number of people unable to speak for themselves. Active in social media since the days of MySpace, Myers decided to start a Facebook page called Kidney Stories to spread awareness about kidney disease. He now administers about 30 pages for people in need of organ transplants.
"I've done all the other stuff: knocked on doors, manned tables. At an event, I might reach 25 to 50 people," said the former college professor. "On social media, I'm reaching close to 100,000 people a week."
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It also gives himself something to do during treatment. Myers, 61, has polycystic kidney disease, a hereditary condition that causes cysts to grow on the organs. He does dialysis four times a week, for three hours at a time.
On a recent day at a Dyer dialysis clinic, Myers typed at his laptop with his right hand, his left arm hooked up to blood-filled tubes leading to a machine that filtered the toxins out of his body.
"This is one I opened this week," Myers said, pointing to his computer screen, his browser open to dozens of pages. "The guy's from Georgia. I've got him up to 119 likes in a couple days."
Last year, Myers won the inaugural Social Media and Advocacy Award from the American Association of Kidney Patients. "I'm on three transplant lists. I have good doctors that look after me," he said. "I hope to find my own donor, but I really enjoy helping other people."
Inspired by her dad receiving a liver transplant five years ago, Laurie Lee, of Cary, Ill., now tries to help others make similar connections. After meeting Sintich recently, she helped set up her Facebook page, Looking for a Liver for Nora.
"Right now, with millennials, they're altruistic and looking to help people," said Lee, 35. "And those are the people on social media. There's a ton of potential."
A family photograph of Nora Sintich, left, her brother John Medina and her sister Teresa Rivera, who died from liver disease when she was 40. In the photograph from 2008 Nora's head is shaved after she had brain surgery. Liver disease is hereditary in Nora's family. Jonathan Miano, The Times \
Sintich is willing to give it a try. Several of her loved ones have been tested to see if they'd be candidates, to no avail. Her condition has progressed, but not to the point where she'd move to the top of the waiting list.
She has a hereditary form of cirrhosis of the liver, a disease that took the life of her sister at the age of 40. She also has hepatic encephalopathy, a decline in brain function, as well as a movement disorder.
"I've spent so much time in the hospital, the nurses call me the frequent flyer," she said.
But her doctors have told her her health would largely return to normal with a successful transplant. If that happens, she plans to volunteer for a Chicago-based transplant organization and her husband, Doug, intends to donate his liver to a stranger.
"My grandma made it to 98. I tell my dad I'm going to beat grandma," she said. "I fight because I have two granddaughters (5 and 2). I tell my son I'll be at their college graduation."
Guest
Commentary-Support the Living Donor Protection Act
I am
asking people today to contact their Representatives in Congress and ask them
to co-sponsor and support The Living Donor Protection Act. (HR 4616/ S 2584).
This law is designed to
remove hurdles for people that want to donate kidneys.Specifically, according to the National
Kidney Foundation, it does 3 things:
1.Prohibits life, disability, and long term care
insurance companies from denying or limiting coverage or charging higher
premiums for living organ donors;
2.Clarifies
that living organ donors may use the Family Medical Leave Act to recover from
the surgeries and procedures involved in their donation without fear of losing their
job or benefits; and
3.It
will cost the federal government no money.
The American Society of
Nephrology has stated that the Act could potentially save Medicare between $565
million and $1.2 billion over 10 years.
When you consider that:
·There
are 26 million Americans are afflicted with Chronic Kidney Disease;
·470,000
are on dialysis;
·Over
100,000 are on a waiting list for a kidney transplant;
·Only
about 17,000/year get transplanted
·12
Americans die every day waiting on that list for a transplant, that’s over 4000
people every single year;
We should do everything
we can to make sure donors are not penalized by their insurance companies or
employers when they want to donate.
