Red tape hurts sick man’s chances

TGI Staff Writer

April’s Organ Tissue and Eye Awareness month makes Jonnie McCarroll of ‘Ele’ele happy and sad.

Happy because the month-long observance helps raise public awareness about the importance of organ donations in Hawai`i.

Sad because the occasion reminds McCarroll, 48, that his life is ebbing away.

McCarroll has a degenerative liver disease brought on by hepatitis and doesn’t have private insurance for a life-saving liver transplant operation in Hawai’i. He said he has between a year to two years to live.

McCarroll’s Social Security disability benefits offered through Medicare and Medicaid will only cover a liver transplant operation on the mainland. He said his predicament has left him with two options: Become critically ill so that he can qualify for an emergency surgery, or die.

McCarroll said 300 Hawai`i residents are in the same fix and the problem will only get worse, particularly for poor or elderly people who are covered by Medicare and Medicaid only.

“These people are suffering,” McCarroll said. “This whole thing comes down to money, and I don’t know what to do about it.”

McCarroll said a ceremony last month on Kaua’i to emphasize the importance of organ donations in Hawai’i illustrates the seriousness of the problem.

A Kaua’i man said his mother was diagnosed with a failing liver three years ago and died while she waited for a replacement liver. She died not because of the lack of the availability of another liver, but because she had the wrong insurance, her son said.

Her Medicare coverage only allowed for an organ transplant outside Hawai’i. Had she been covered by a private health insurance plan, her son said, she would have had the surgery done in Hawai’i and be alive today.

Donna Pacheco, an official with the Transplant Institute at the St. Francis Medical Center on O’ahu, said she sympathizes with McCarroll and others who need organ replacements to live.

At the same time, the number McCarroll cited “is too high,” said Pacheco, a transplant coordinator at the institute, the only facility in Hawai`i federally approved for liver, heart and kidney transplants.

The facility has about 25 residents on the waiting list for liver transplant surgeries that would be covered only under private health insurance policies, she said.

Whether Social Security benefits can be used for liver transplant surgeries at the O’ahu facility rests with Medicare, Pacheco said.

In order for liver transplants to be covered by Medicare, St. Francis Medical Center must be certified through the United Network of Organ Sharing (UNOS), a government agency that monitors the performance of transplant facilities in the United States.

The Health Financing Administration oversees UNOS and Medicare, which decides which medical facilities are allowed to perform liver transplants and whether Social Security benefits can be used for the operations, Pacheco said.

The Health Financing Administration requires 12 liver transplant surgeries be performed before a liver transplant facility such as St. Francis can apply for certification.

Last year, 11 liver transplants were performed at St. Francis. So the center can cover the cost of such operations through Social Security benefits, the hospital is seeking an exemption from the Health Financing Administration, partly due to Hawaii’s remoteness, Pacheco said.

The number of liver operations in Hawai’i are determined by organ donations, and “there are never enough” of the latter, Pacheco said.

But she said organ donations can improve, thanks to better public education and state legislation passed in 1998 in which every donor family must be asked about the option of tissue and organ donation.

In the past, hospital officials didn’t make the request, resulting in lost opportunities for organ donations, Pacheco said.

But even if St. Francis gets the exemption, McCarroll is not guaranteed a liver operation in Hawai’i, Pacheco said. She noted other people in the state face the same challenge and that “he will have to wait just like everyone else.”

McCarroll said he started getting sick five years ago. On a return trip from Mexico to Kaua’i, he became violently ill and went to seek medical help, but doctors “couldn’t find anything,” he said.

He went through an appendectomy in 1996 and thought his problems were behind him.

Four months later, he was diagnosed with hepatitis, a surprise to him, he said, because he had no symptoms of the disease previously.

In 1996, he went to the St. Francis Liver Center on O’ahu to participate in a research project aimed at finding a cure for hepatitis.

In 1999, he took an experimental drug for 48 weeks, during which he suffered from fevers, colds and irritability and had suicidal tendencies, he recalled.

The chemical injection worked for others who participated in the research, but it could not halt the spread of the disease in his liver, McCarroll said. The disease had taken its toll.

Although his medication allows him to function as normally as possible, he said he is constantly tired, his mental keenness has dulled and his memory has faded.

“I drive to the airport and I can’t remember why,” McCarroll said. “Other times, I would go to the store to get milk five times and wouldn’t know why.”

He said he went through the research project because he had “no other place to go for help.”

McCarroll, a power engineer and an energy conservation expert, worked for three electrical supply companies on Kaua’i since moving from O’ahu in 1989. The last company laid him off, ending his private health insurance coverage. No company “will touch me” because of his medical condition, he said.

McCarroll said he is “sick and tired of being sick,” and that he would welcome death. But he said he is hoping that a liver transplant will become possible through Medicare or Medicaid.

“I don’t know what the future will bring,” he said. “I just live day to day. That is all I have.”

Staff writer Lester Chang can be reached at 245-3681 (ext. 225) and lchang@pulitzer.net