For college student Kurt Fadden of Indialantic, getting a kidney transplant this summer was priceless. The out-of-pocket expenses his insurance didn't cover? Not so much.
Gas, tolls, hotel and meals added up to "at least $200 a day for everything," said Fadden, 21. "Fortunately, my family is financially stable. But if you're not, it would be nearly impossible."
That's why Florida Hospital officials have announced plans to build a $5 million "Transplant House" near their Rollins Street campus in Orlando. The 24-room facility would be an adult equivalent of a Ronald McDonald House, offering families of transplant patients a private bedroom and bath, and a communal kitchen to prepare meals — all at a highly discounted rate.
The hospital hopes to open the facility in the fall of 2015.
"It really is a very similar concept to a Ronald McDonald House," said Leigh Ann Burgess, administrative director for the Florida Hospital Transplant Institute, which celebrated its 40th anniversary Sunday. "Except Ronald McDonald is for families of pediatric patients."
The region's only multi-organ transplant center, the institute draws patients from 10 surrounding counties for everything from bone marrow to a new heart, lungs, liver, pancreas and kidneys. Families usually want to stay as close by as possible.
"So if you're a transplant patient from Melbourne, that's not too far to come to have the surgery," Burgess said. "But what if you had a complication — or what if you needed a heart and ended up being hospitalized for weeks or, potentially, months while you're waiting? There isn't an affordable or even close option available for your family to stay. That becomes a huge out-of-pocket expense."
Even when things go flawlessly, as they did in Fadden's case, there are dozens of appointments at the institute. Fadden's family drove him to doctor visits and tests at least twice a week over the past three months, plus 10 trips before the transplant. The drive is an hour and 45 minutes each way — meaning Fadden often had to get up at 4:30 a.m. when he was still recovering from surgery and not sleeping well.
An organ transplant and related hospital and medication costs can run upwards of $800,000, Burgess said, with a national average of $650,000. Although insured patients are typically covered for much of that bill, they still face an average out-of-pocket expense up to $50,000 and will likely make 40 post-transplant hospital visits.
"People don't realize all those extra expenses," said Anne Paschke, a spokeswoman for the nonprofit United Network for Organ Sharing (UNOS), which contracts with the federal government to manage the nation's transplant system. "They can add up very quickly. We do suggest they work with the designated hospital's financial coordinator."
Melissa Heins, a 41-year-old dental hygienist from St. Cloud, is already fundraising for her own transplant. Placed on the waiting list for a kidney in April, she has launched an online campaign through a nonprofit called HelpHOPELive.org to cover the out-of-pocket bills.
"The hospital told me it typically takes about a year or a year and a half to get a kidney," said Heins, whose kidneys inexplicably began failing nearly six years ago. "I'm hoping to make it a little longer so I can raise more money. It's the bills afterward that are really difficult."
Growing weariness has forced her to cut back her work schedule to three days a week, reducing her income. And just one of the immune-suppressing drugs she'll have to take after the transplant costs $1,060 a month out of pocket.
Then there are commuting costs for her husband and two step-children, and lodging and meals for her parents, who will drive 1,000 miles from Pennsylvania so they can help care for Heins after the surgery.
"These are exactly the reasons why HelpHOPELive was founded — so patients can afford transplants," said spokeswoman Shannon Shensky. "When we began 30 years ago, a lot of the medical costs were not covered by insurance, but now our primary focus is meeting those other out-of-pocket needs — and housing is a big one. Oftentimes people need to re-locate temporarily to be close by in case an organ becomes available."
Last year, the charity answered nearly 1,000 requests for assistance from transplant patients, who are required to raise funds themselves. In return, HelpHOPELive paid out more than $3.5 million — nearly a third of that for lodging, food and transportation.
"A transplant house is a great thing," Shensky said. "It definitely offers an affordable option."
Throughout the state, only the Mayo Clinic campus in Jacksonville and the University of Miami/Jackson Memorial Hospital in Miami have transplant houses.
Florida Hospital already has the land available on its campus and has raised more than $1 million for construction costs. But it will need another $4 million or so in the coming two years to make the project a reality.
"For years this has been our vision – to provide a place to our patients and their families so they have one less burden to worry about," Burgess said. "I'm elated that it's finally happening."