Health advocates look to tackle misperceptions about liver donations

Health advocates look to tackle misperceptions about liver donations
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Health advocates on Friday unveiled a new survey on attitudes toward liver donation, part of a push to improve education about the issue and encourage more Americans to take part in living-donor transplants.

In Washington on Friday, Dr. John Whyte, the chief medical officer of WebMD, presented the findings of the survey from WebMD and the University of Pittsburgh Medical Center (UPMC) and led a panel discussion at the Living-Donor Liver Transplant Summit at the National Press Club.

The new survey, titled Understanding Attitudes and Perceptions About Liver Disease and Transplantation, looked at the public's knowledge about the safety and effectiveness of liver transplants from living donors.

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"There are different perceptions about who needs a liver, why they need a liver and how the process works, and those differences, primarily, are based on sex, race and age," said Whyte. "So we need to have more effective communication strategies of how do we address the need, as well as acknowledge the bias that exists."

The survey found that 68 percent said they were not knowledgeable about liver disease. While nearly 80 percent said they had little knowledge of the liver transplant process. More promisingly though for health advocates, nearly 70 percent said they were aware livers can be transplanted from living donors.

The survey found that 70 percent of people were willing to consider being a donor for someone they knew and 39 percent were willing to be a donor for a stranger.

Yet advocates say that has not translated into actual donations, leaving a lengthy waiting list.

Nearly 14,000 patients are in need of a liver transplant and roughly 20 percent will die while on the waiting list, according to WebMD and UPMC.

The survey also found misconceptions around patients who need liver transplants. Forty-three percent of people thought liver transplants were mostly needed for patients suffering from drug or alcohol abuse. In fact, only 29 percent of transplants are due to drug and alcohol abuse. That misinformation has led to stigma and hampered donations.

“People don’t want to donate to someone who has had history with alcohol or drug abuse," Whyte said. "Alcohol and drug abuse is an addiction. It’s a disease just like all of the other diseases, so how do we address whether or not it really matters why someone needs a liver?”

Dr. Abhinav Humar, chief of the Division of Transplantation at UPMC, spoke about the reasons for a shortage in liver transplants, which he attributed to patients, caregivers and even physicians being misinformed.

Humar said he has heard patients say “my doctor told me this was a last resort only,” or that there are “alternative remedies” to combat liver problems. Neither of those statements are accurate, he said.

Humar also addressed concerns people may have about living-donor transplants. He said that while they are major operations, donors are usually out of the hospital in five to seven days and can be back at a desk job in four to six weeks. He dismissed the idea that living-donor liver transplants are more risky than kidney transplants because people only have one liver. Humar said that in fact the liver is able to regenerate quickly.

Attendees at the discussion also heard from two people, Rina Kader and Wayne Livingston, a liver donor and recipient, respectively.

"I gained an extended family and a new zest for life,” Kader said, about donating part of her liver to Livingston, someone she barely knew before the operation. Livingston said Kader had given him "the biggest gift of all.”

The panel discussion included Humar; Tom Nealon, president and CEO of the American Liver Foundation; David Fleming, president and CEO of Donate Life America; Dr. Swaytha Ganesh, medical director of the UPMC Living Donor Program; and Brian Shepard, CEO of United Network for Organ Sharing. Each discussed how to increase the number of living-donor liver transplants.

Nealon said he hoped the summit would bring new attention to the issue.

“The exciting part of this is it has the opportunity ‘of throwing pebbles in the pond,’ or in other words, to create greater awareness about organ donation," he said. "More people need to consider, and make themselves more knowledgeable about, being living donors.”