PALMER -- Wherever he goes in his busy life as a father, husband and bail bondsman, John Chapman carries with him a flier with two photos of his middle son, Troy, announcing an upcoming benefit.
One photo, taken in 2002, is of a smiling, handsome boy wearing a Palmer High School letter jacket.
The other is more recent. This Troy is hooked up to a bunch of machines.
Even though the photo is slightly blurred, you can count the ribs straining against his skin.
It's been 24 years since John and Autumn Chapman came home with their almost 8-pound son. Their baby shed weight like a tree loses leaves in fall and could keep hardly any food in his stomach.
He'd stop drawing his hoarse, labored breaths several times in the night, jerking his parents awake, their hearts pounding.
Troy was 6 months old and fighting pneumonia when the Chapmans learned he was one of 30,000 people in the U.S. with cystic fibrosis, a genetic disease affecting the lungs and digestive system.
The body produces thick mucus that clogs the lungs, leading to infections. The mucus also prevents the pancreas from sending natural enzymes to the stomach to aid digestion. John and Autumn struggled with the knowledge their son probably wouldn't make it to adulthood.
'We were told we had a fair chance for him to make it to 12," John said. "Realistically, we thought he'd live until he was about 7 or 8 years old."
They were wrong. He graduated from high school but hit the wall health-wise soon after.
Troy met the lifetime maximum on his father's insurance at 19 and went on Medicaid.
He's now 6-feet 2-inches tall and struggling for every breath.
Due to an Alaska regulation barring anyone older than 21 and on Medicaid from receiving a lung transplant, Troy and his mother have moved to Seattle.
He's currently in the hospital there; when Troy is ill, his father states, the young man has difficulty enunciating. Messages left for him weren't returned by press time.
SEATTLE-BOUND
There's no age limit for transplant candidates in Washington state. Once you're a resident there, Medicaid will pick up the tab. For someone who has no private insurance and who faces a $250,000 surgery, followed by thousands of dollars in post-treatment and medication, Medicaid is often the only option.
Dr. Dion Roberts has been Troy's doctor for 20 years. He's the only pediatric pulmonologist in Alaska and estimated he treats about 55 CF patients.
A patient like Troy "not only has the cost of the transplant, he has the cost of living while he's waiting; he can go two years and just sit there," Roberts said. "When he's here, he's got his family but once he moves, either the family goes or he has to go it alone, which doesn't work out. That really is a big issue for a lot of people, especially single people. It's really disruptive and hard on families."
The life expectancy for a person with CF has grown rapidly in the past decade. Today, it's 36.8 years.
Roberts said the experts aren't really sure why it's increased so rapidly -- could be better nutrition, better drugs, better medical practice.
But one thing's sure -- more patients are living past 21 without requiring a transplant.
MORE LIVE TO GROW UP
In Alaska, Roberts said, half his CF patients are adults.
Except for Troy, none of them are on the transplant list. But all are aware they'll make the transplant decision sooner or later.
Rep. Les Gara, D-Anchorage, has corresponded with state Health Commissioner William Hogan about Troy's case.
According to information Gara obtained from the Department of Health and Social Services, Alaska's age cap places the state in the minority; at least 35 states cover lung transplants for adults in at least some circumstances.
In a letter dated July 22 from the department to Gara, Hogan stated that "the department commonly submits coverage changes of this magnitude to the Legislature for budget approval."
According to Cindy Christensen, the department's operations manager for health care services, the department pitched a proposal to increase funding for lung and health transplant recipients over age 21 to the Legislature last January. The funding was not approved.
"What I can share is that the division of health care services is interested in pursuing an emergency regulation; however, we still need legislative funding in order to pay for those services," Christensen said. "The emergency regulation would be up to the Legislature, and I assume Mr. Gara is gathering support."
Gara called it an "embarrassment" to be a state awash in money that doesn't provide basic services to its residents.
Christensen said the department estimated it would cost about $750,000 per transplant patient, but because it's unknown how many individuals would place themselves on transplant lists and qualify for the funding, the annual bottom line is hard to calculate.
A change to the regulation probably wouldn't cost the state any more money than it's paying now, Roberts said. Frequent hospital stays by CF patients already cost a lot of money.
"When I look at the number of days Troy has been hospitalized this year, and do the calculations, I figure it would've paid for probably (two) transplants," Roberts said.
LIFE AFTER TRANSPLANT
Jeffrey Tews of Anchorage had a lung transplant 15 years ago, when he was 38. A lifelong sufferer of cystic fibrosis, Tews said that first deep breath soon after surgery was amazing. He returned to full-time work in construction six months later, a remarkable recovery.
Less than 50 percent of lung transplant patients live longer than five years, according to the Cystic Fibrosis Foundation.
Tews said he did well because of the pristine set of lungs he received and his body's good response to the anti-rejection drug regimen.
Like any transplant patient, Tews is a frequent guinea pig for ongoing drug studies and knows that, as the cystic fibrosis population ages, problems with insurance loom large.
Most transplant centers won't list a patient without the ability to pay.
"It's getting to be more of a common scenario, people living into their 20s and 30s," Tews said. "These kids don't have a chance to contribute, and they could."
In the meantime, Troy waits to live and longs for home, his dad said."We're not going to pull stakes," John said. "Troy's already said, don't sell the house. It galls him that he has to be a resident of somewhere else. He was born here."
Find Melodie Wright online at adn.com/contact/mwright or call 352-6721.
YOU CAN HELP
• The Anchorage Police Department is hosting a yard, craft and bake sale to benefit the Chapman family from 9 a.m.-5 p.m. Saturday at Hanshew Middle School, 10121 Lake Otis Parkway. To donate to the fund, visit Wells Fargo Bank and ask to donate to the Troy S. Chapman IRRV Special Needs Trust Fund.
By MELODIE WRIGHT
mwright@adn.com