Organ Donation Awareness Up, Participation Lagging

U.S. Newswire

Contact: Rick Lofgren, 800-366-2682

e-mail: rick@cota.org

or Guy Tichy, 630-289-4647

e-mail: guyrtichy@home.com

both of the Children's Organ Transplant Association

BLOOMINGTON IN -- Despite national advertising campaigns and recent success stories regarding high-profile organ transplant recipients, the outlook for increasing the number of organ donors in the U.S. remains bleak. This according to the Children's Organ Transplant Association (COTA), Bloomington, Ind.

COTA was founded in 1986 by a citizen group attempting to raise funds for a young Bloomington, Indiana child in need of a liver transplant. Its mission is to ensure that no U.S. citizen is ever denied a life-saving transplant, or access to a transplant waiting list, due solely to lack of funds. To date, COTA has raised about $20 million for approximately 530 families.

Sad Facts

"Published figures from the United Network for Organ Sharing (UNOS) indicate that about 75,000 people are awaiting an organ transplant, and we estimate that more than 100,000 are waiting for a potentially life-saving bone marrow transplant," according to Richard Lofgren, COTA's president and CEO.

The numbers regarding organ donation are not encouraging. For example, of the more than 270 million people in the U.S., only about 20,000 annually pledge to become potential organ donors. "There are about 2.1 million hospital deaths per year in this country, and from these deaths, about 15,000 organ donations would be possible," states Lofgren. "Unfortunately, only about one-third of hospital deaths actually result in a donation." Experts have estimated that each person who pledges to donate could save the lives of six people, and help as many as 50 individuals in need of, for example, corneas and other organs and tissue.

All trends point to a widening gap between the demand for transplanted organs and the supply of donor organs. "Between one third to one half of all people on organ waiting lists die before a viable organ is found," says Lofgren. "In fact, 16 people die each day awaiting a transplant. And sadly, a new transplant candidate is added to a waiting list somewhere in this country every 14 minutes."

Some states, such as Illinois, have actually experienced slight increases in organ donation recently. According to the Regional Organ Bank of Illinois (ROBI), donations in the year 2000 rose slightly, largely due to an aggressive public awareness program, and widespread support at the highest levels of state government. Despite this slight increase, however, more than 400 people died in Illinois last year while awaiting a transplant.

The High Cost of Living

Although buying and selling organs is illegal in the United States, money certainly plays a key role in determining who gets referred for consideration for a transplant. Access to transplantation remains largely a function of access to good primary care and having the right kind of insurance, which can be heavily dependent on personal finances. "To gain access to the national organ registry, a patient must demonstrate the ability to pay transplant-associated costs," Lofgren notes. "And when you consider the costs of a liver transplant, for example, can exceed $250,000, excluding lifetime prescription costs, it's no surprise that the number of people who actually undergo successful organ transplantation remains so low."

"COTA strongly believes that money, or lack thereof, should not be the single most important factor in determining who does and does not qualify for an organ transplant," says Lofgren. "In reality, however, money does indeed play far too an important role in this decision, so we do what we can with our patients to try and bridge the gap between the insurance carrier's prescribed limits and the real costs of transplantation."

COTA has worked with hundreds of families to help them keep their fight for a viable organ alive. "We have assisted children and adults alike help meet staggering financial needs -- some as much as $400,000 -- largely because insurers limit what they will and will not cover in procuring and transplanting an organ," Lofgren says."This is not an indictment of the insurance industry, but the gap between coverage and actual cost can literally break a family's financial situation, not to mention the emotional toll this process can take."

The "Discussion Gap"

While thousands of well-meaning people actively sign up to become organ donors each year by signing their driver's license or a donor card, the ultimate decision to donate still comes down to immediate family members, according to Lofgren. "We know, for example, that a full 85 percent of Americans support organ donation, " he says. "But sadly, many family members are not aware of their deceased loved one's wishes, and therefore decline to allow the donation." Lofgren stresses that anyone wishing to become an organ donor fully discuss this intent with all who may be involved in the event of an untimely, or natural, occurrence of death.

"Many extremely successful, well-meaning organizations and individuals have devoted their lives to the cause of organ donation and transplantation issues, including COTA," notes Lofgren. "But a very unfortunate disconnect exists when a willing donor's wishes are not known to others close to them, rendering all of their intentions null and void."

"Organ donation does not necessarily make for lively dinner table conversation," Lofgren continues. "But when you consider that thousands of people are dying -- many needlessly -- in this country each year, it's certainly worth a few serious moments to make your wishes known."

Editors: Information on specific patients served by COTA is available upon request. These patients, all of whom have undergone or are awaiting transplantation, can be reached through Guy Tichy, media relations contact for COTA. Phone: (630) 289-4647; e-mail is guyrtichy@home.com. I would urge you to visit the COTA Web site for more detailed information on organ donation and transplantation.

It can be found at http://www.cota.org/.

For More Information, Contact: Rick Lofgren, president, COTA, 2501 COTA Drive, Bloomington, IN 47403; phone: (800) 366-2682; or e-mail: rick@cota.org. Guy Tichy, COTA Media Relations, 203 Somerset Drive, Streamwood, IL 60107; phone: (630) 289-4647; fax: (630) 289-4093; e-mail: guyrtichy@home.com

Copyright © 2001 U.S. Newswire.

This article posted February 7, 2001.