Local Organization Helps Thousands

HOLLI W. HAYNIE

Local Organization Helps Thousands

Heart transplant recipient and NFT client, Brian Barndt, played in the U.S. Transplant Games in Philadelphia for the National Kidney Foundation.

Nationwide Raise Funds for Transplants

In 1990, Sherree Hughes was experiencing acute renal failure. A juvenile diabetic, over the years her kidneys had slowly deteriorated until her only option was transplantation. She was on the waiting list for 18 months before receiving a new kidney and pancreas. At press time, the United Network for Organ Sharing (UNOS) reported there were 99,274 people on the transplant waiting list. For anyone who's had to face an organ transplant, the reality of waiting, and the gravity of paying for it, is a massive burden to bear. With only about 27,000 transplants performed annually, and 18 people on the lists passing away each day, organ procurement and financing are precious resources.

The National Foundation for Transplants (NFT) is a local non-profit that formed in Memphis 25 years ago to assist people on transplant waiting lists to raise funds for their surgery and medical care.

"Even with good insurance, it only pays 80 to 90 percent so it's still a high out-of-pocket expense," explains NFT president, Jackie Hancock. "Plus there are follow up costs. Most patients we help are under insured or uninsured."

Today, a simple kidney transplant can be $250,000 to $300,000. The most common transplant is kidney; the least common is heart and double lung.

Hughes, now a medical administration instructor at Ouachita Technical College in Hot Springs, Ark., was referred to the foundation from the transplant clinic at the University of Tennessee, and with guidance from NFT, was able to develop a plan to raise money for the expensive operation.

"None of (my family and friends) knew how to do this," said Hughes, adding that she was not in the mental or physical condition to pull things together on her own. "They showed me how to put people in place to get money. Without that I wouldn't have been put on the list."

Back then, a pancreas transplant was experimental. For experimental transplants, patients are required to deposit a certain portion of the transplant cost to be added to the waiting list. Hughes outlined a game plan and chose a chairman of her campaign, her cousin, who would oversee fundraising efforts. Utilizing NFT provided materials, support from neighbors and the community; they developed various projects – from auctions and yard sales to car washes and canister collections. After the transplant, NFT provided her with a free room and help with medications following the transplant.

"NFT allows you to concentrate on your health," said Hughes. "Knowing they're there to provide support is comforting. It's like a security blanket."

Formed in 1983 by three ladies who had a friend in need of a liver transplant, the founders worked within the clinical community to research fees and develop a method to help patients raise significant amounts of money toward their transplants. As the infrastructure grew, explained Hancock, transplant physicians began approaching the ladies to replicate the process for the huge need in the community. For 10 years, it was operated out of their homes, then it grew into a national organization that has since helped thousands of Americans take a proactive role in raising transplant funds.

NFT assists legal United States residents who are on a waiting list for an organ or bone marrow transplant. Patients are typically referred by transplant centers. Assistance is designed for those who have financial needs beyond costs covered by private insurance or public assistance.

NFT currently has about 300 active patients, both pre- and post-transplant. All patient needs are treated equally and assistance is not based on health or level of insurance.

"Transplants are so expensive, even if someone is well-off, it's hard to pay for," Hancock said.

In fact, a 2005 Harvard University study reported that half of all U.S. bankruptcies are due to medical bills. The study estimated that medical-caused bankruptcies affect about 2 million Americans each year, including 700,000 children. More than three quarters of those who filed were insured.

NFT raises money through various community and national fundraisers. As explained by the NFT website, of the money raised in these community drives, 95 percent goes to the appropriate state fund to pay for transplant-related costs not covered by insurance. Only five percent is retained to cover NFT campaign costs. Patients are given the training, guidance and materials they need to succeed in their own campaigns toward their transplant; then NFT appropriates the funds toward a patient's treatments, anti-rejection medicines and other costs essential to transplant health such as lodging and caregiver fees.

"We are with (patients) for life," maintained Hancock.

He said NFT tries to raise an average of $18,000 to $22,000 for each patient, adding, "We're very successful in doing that but usually it ranges from $25,000 to $30,000."

In 2003, Hughes required another kidney transplant. This time she waited a year and had a living donor. But since her experiences from the previous transplant, she knew exactly how to make it possible.

"(NFT) covers things you wouldn't expect – any illnesses related to a transplant," said Hughes. "In case something falls through the cracks, someone is there to pick it up."

The majority of the patient load for NFT is outside the Mid-South, explained Hancock, but they have a local staff and are a welcomed national resource by local hospitals. He said in Memphis, just about any type of transplant needed by patients is available. NFT works closely with the transplant teams at Baptist and Methodist.

"We are the best kept secret in Memphis," he added. "Thousands of people have been helped. We want people to know we're here and available."