Hundreds of people in Missouri and Kansas are waiting for an organ transplant that could save their lives.
The good news is that their wait may be shorter than people in other parts of the country. But one group is proposing changing that, by creating a national organ sharing program.
Chris Crenshaw was 41 years old when he had to plan for life without him for his two young daughters and his wife.
"When you're sick you try to get your life in order to make it easier for your family if you do pass, and that's pretty hard," the Lee's Summit man said, fighting back tears.
Doctors diagnosed him with a rare auto-immune disease that attacked the bile ducts in his liver.
A transplant was eminent.
"It's very nerve-racking to be on the transplant list because you always have to have your phone on standby and hope you have reception for one," Crenshaw said.
Lucky for Crenshaw, he lives in the Heartland, a place where transplant doctors say has the highest rate of organ donors in the country.
"Some cases we have twice the rate of donation per population as some of the other places in the country," said Dr. Sean Kumer, surgical transplant director at the University of Kansas Hospital.
Crenshaw waited a short four months before he found a donor, a time period Kumer says would've been years if the United Network of Organ Sharing (UNOS) gets their way.
"The goal is to really, by UNOS, is to share donors across the country," Kumer said.
UNOS is a government contracted regulating agency that oversees organ transplant centers.
It wants all organs to be made available nationally versus the current local, then regional distribution practice.
"That hurts our patients, our recipients. Our patients will get sicker before they get transplanted and that's not fair," Kumer said.
The idea is by widening the distribution list, more recipients will be waiting for the same pool of donated organs.
Kumer believes that will lead to longer wait times and weaker patients.
"There's no reason because our people are more giving of themselves by donating that our local population shouldn't suffer," Kumer said.
The University of Kansas Hospital's Transplant Center transplanted 114 livers in 2013 and is on track for the same amount this year.
Kumer believes the only way to save more lives is to expand organ donor awareness programs.
The University of Kansas Hospital is studying the effects of donor awareness which Kumer suggests could lead to more lives saved than by expanding the recipient pool.
"Vote is stacked"
Each transplant center in the United States gets one vote toward actions taken by UNOS.
Even though University of Kansas Hospital conducts some of the highest numbers of transplants in the country, it still only has one vote to put towards the decision on whether to start a national organ sharing program.
Kumer believes the deck is "stacked" since there are more transplant centers in low-donor populations.
"We're absolutely in the minority because we have a great commodity and everybody wants it. Doesn't mean everybody should get it," Kumer said.
Kumer says talking to your lawmakers and even calling UNOS is the best way to be heard.
Transplant doctors don't have a scientific answer for why the Midwest boasts such high numbers of organ donors.
Their only guess is the Midwest's "giving" reputation lends a more organ donor-friendly population.
But for Crenshaw, he fears the myths about liver disease prevents some from signing up as a donor.
"Most people say I didn't think you drink that much, that comes up about 90 percent of the time," Crenshaw said.
He suspects some might have hesitations about donating a liver to someone who suffers from cirrhosis, a common illness linked to alcohol consumption.
However, doctors say the leading cause of liver disease in the 21st century is a "fatty liver."
Obesity and overeating is now the number one reason for liver failure.
While Crenshaw suffered from neither one of these diseases, he joins in Kumer's concerns that fatty liver disease could dirty the donor pool too.
After our story aired, Joel Newman, a spokesman for the United
Network for Organ Sharing, sent the following response to KCTV5's Bonyen
"First and foremost,
there is no current "proposal," and the concepts under discussion
definitely do not include a default national allocation system for
livers. The "why" is also important; we are considering a set of
possible options with the goal of reducing the variation in how long the
very sickest liver candidates wait for a transplant in different areas
of the country. Any concept that is developed will be broadly published
for public review and feedback from anyone interested, but we are not
yet at that stage."
Copyright 2014 KCTV (Meredith Corp.) All rights reserved.
Thursday, August 28 2014 9:44 PM EDT2014-08-29 01:44:10 GMT
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