More concerns surround Texas transplant programs

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by ANDY PIERROTTI / KVUE News and photojournalist ERIN COKER

Bio | Email | Follow: @AndyP_KVUE

kvue.com

Posted on November 30, 2012 at 10:59 AM

AUSTIN -- Rodney Parrish considers himself lucky.

About twenty years ago, both of his kidneys failed. Doctors put him on a transplant waiting list and dialysis to keep him alive. Less than a year later, the husband and father got good news.

“It took less than a year…The fact that I was able to get one so quickly, I mean what can I tell you, as far as my quality of life is concerned, it's immense," Parrish said.

Dr. Charles Andrews helped secure his kidneys as the transplant director for Harris-Methodist Hospital in Fort Worth.

"At one point in the late 1980s, we had the shortest waiting time in the United States for kidney transplants," Andrews said in his Fort Worth office.

Andrews attributes the success to its local transplant program called an ALU, or alternative local unit. Fort Worth is one of six in the state to have the status. It gives patients living in those communities first choice to locally donated kidneys.

"Which meant that all the kidneys procured in Fort Worth, we got first choice in Fort Worth," Andrews said.

A KVUE Defenders investigation found Austin's program works differently and patients pay the price. More of our kidneys are provided to other cities than transplanted here.

According to transplant registry reports reviewed by the Defenders, patients in the metro Austin area wait more than six years for transplants. That's more than three times as long as ALU transplant communities in Texas.

In 2010, 71 kidneys were harvested in Austin, but only five of those were donated to people living here.

"When I heard that, I was devastated," said Kim Hodge of Austin. She’s been on the waiting list for a kidney for the past two years.

For twenty years, Austin tried to implement its own ALU program, but UNOS, The United Network for Organ Sharing, never allowed it. UNOS sets transplant policies for the nation.

"To me, that's pretty unfair," said Bob Spurck, CEO of the Austin Diagnostic Clinic.

Spurck said UNOS never explained why it denied Austin's ALU requests. He opened Austin's first transplant center as head of Brackenridge hospital in 1972.

"I know there were many efforts tried, but I think it fell on deaf ears," Spurck said.

So, what is UNOS doing to fix the problem?

UNOS wants to essentially eliminate all ALUs, and make one waiting list in each of the state’s four service areas. UNOS officials argue that by doing so, everyone will be on a more level playing field.

That means Austin will never get its own local program and the six Texas ALU communities, including Fort Worth, will soon see longer waiting times.

"At the time, we were probably not considered a major metropolitan city. We clearly are now, and the solution to address the problem is not to take it away from everybody who has that designation, but to give it to Austin," Spurck said.

Andrew expressed similar concerns.

“Fort Worth will probably do fewer transplants even though they procure at a rate much higher than the national average."

Dr. Mark Aeder is on the UNOS committee that sets kidney transplant policies.

“There's no way of knowing if that's going to happen or not unless we have an absolute baseline in which to work from," responsed Aeder to the ALU concerns.

To compensate communities with longer waiting times, Aeder said UNOS wants to give those communities more kidneys. But, there's a catch. Those kidneys will have shorter survival rates than healthier kidneys going to larger cities.

"It's a hard sell to the patient that we would give you a kidney that the national organization is saying it's really not a good quality kidney," Aeder said.

Hodge doesn't think it's ethical.

"Even though we have a community that is probably one of the best for organ donation, it's amazing that there are not enough kidneys for those of us who live in the area."

UNOS sees it differently.

"You mentioned whether it was ethical or not. The patients will have to sign a consent order to be able to be accepted to receive one of these kidneys. If they don't want this and they don't sign the consent, then they'll never be offered the kidney," Aeder said.

UNOS is accepting public comment on the proposed changes until mid-December. If approved, the changes to go into effect in 2014.

Austin, Fort Worth and other transplant communities have appealed to UNOS not to implement the changes.

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