A liver transplant costs an average of $300,000 — for the first year.

Patients must have the funding, or be on their way to raising it, before they will be placed on the waiting list.

"If you don't have funding, you are not going to be eligible for transplant," said transplant doctor Terry Box, who said five or six adults each year in Utah and Idaho don't get a liver transplant because they can't afford one. He cares for liver transplant patients at University Hospital and said the rules are the same at his former employer, Intermountain Healthcare.

And once patients get over that initial financial obstacle, the costs don't stop: $20,000 a year in medications, co-payments for check-up visits, hotel stays and travel costs.

But Utahns have been helping child transplant recipients with those costs for 15 years by donating part of their state tax return. Named for the late lawmaker who created the fund, the Kurt Oscarson Children's Organ Transplant Fund offers financial assistance for medical expenses associated with the transplants.

About 7,000 Utahns annually contribute to the fund, generating up to $85,000 a year. A committee awards up to $10,000 in no-interest loans, though financially strapped families don't have to pay it back, according to Alex McDonald, of Intermountain Donor Services and a member of the fund's oversight committee. He said no family has been denied funds, and more people are seeking the money.

On Wednesday, two families who sparked the fund's creation celebrated its anniversary at a news conference. "It's a hard thing to watch your child so sick and dying and have it be a money issue," said Judy Toone.

She recalls being told 20 years ago by three out-of-state hospitals (Utah didn't perform pediatric transplants at the time) that her daughter wouldn't be listed for a liver because they hadn't raised $100,000. "I said, 'So am I just supposed to let my child die?'"

She eventually found funds through the Children's Organ Transplant Association, and her daughter Talysa is celebrating her 20-year transplant anniversary this weekend.

While Toone was raising money, so was Marcia Fullmer, whose son Caleb had a rare genetic disorder that also required a liver transplant. An elementary teacher who knew both families presented the problem to her fifth-grade class, which worked with Oscarson on legislation creating the fund, Toone recalled.

Fullmer said she had to turn her son into a "poster boy" to raise $70,000 for the transplant.

"I'm just grateful for my donors," said Caleb Fullmer, 23, who needed two liver transplants. "And anyone who donates to this fund."

hmay@sltrib.com —

Organ transplant fund by the numbers

• 7,000 to 7,500 Utahns donate each year.

• $9: The average amount donated.

• $60,000 to $90,000 donated a year.

• $1.2 million raised in 15 years.

• 90 recipients in 15 years.

Source: Intermountain Donor Services