MAPLETON — The irony is difficult to miss. After dedicating nearly five years of his life to the cause of organ donation, after begging and pleading — once on hands and knees — with administrators, legislators and business leaders on behalf of organ donation and spending hundreds of thousands of dollars of his own money, David Nemelka has been forced to quit because of his own health problems — the kind that organ transplants won't help.
The 67-year-old Nemelka has helped save lives. Through the considerable force of his personality — not to mention his deep pockets — he has helped to place Utah among the national leaders in organ donation.
Spurred by the deaths of extended family members and a neighbor who needed a new heart, he started the Gift for the Quest of Life Foundation, hired a couple of business executives — Lisa Hawthorne and Jeannene Barham, who is his sister — to do much of the actual legwork and proceeded to pushing for improvements in the organ donor system.
"David really was a catalyst behind a lot of stuff to move things forward and faster than we would have," says Tracy Schmidt, president of Intermountain Donor Services, the organ and tissue recovery agency for Utah, which runs the Utah Donor Registry and public education programs. "No question more people became donors because of the energy and initiatives he got going. Utah was on the cutting edge."
Here's what Utah has accomplished in recent years:
Implemented one of the country's first integrated online donor registries.
Created among the first legislation in the country that ensures donor registration will be legally binding at the time of death, thus removing the burden of decision from family members.
Implemented one of the country's first "Good Samaritan" living-donor programs.
Made Utah one of the first states to organize workplace organ donation programs which, among other things, encourages private business to grant paid leave to those who need time off from work to make living organ donations.
Helped with the nation's first organ donor monument, which is located by the Salt Lake City Library in honor of those who have donated organs.
"In a short period of time, they did more than we could accomplish in many years without their help," says Joan Arata, manager of the transplant department at LDS Hospital.
According to Nemelka, since the online registry began in 2002, 87,000 new people have registered, and the number of transplanted organs has increased more than 100 per year. Do the math. The organs, tissue and bone from one body can save nine lives and enhance the lives of up to 50 people.
Without the eccentric Nemelka there to prod and push, the organization has disbanded, although other groups continue the cause.
One meeting with Nemelka will explain his importance to Quest. Sitting in his Mapleton living room with an interviewer, Nemelka rambles for more than three hours on the subject of organ donation before he comes up for air. At times during the interview, his eyes close, his arms flail, his head rolls around on his shoulders and he rocks back and forth on the couch, slapping his legs, pointing, gesturing and shouting, "Daaaa-amn!" Either this man needs an exorcism, or he's turned talking into an aerobic exercise.
It's easy to see why he needs to slow down, he can no longer run the Quest program and why he has high blood pressure. He takes medicine to, in Nemelka's words, "slow down my emotions."
"David is very high-energy," says Schmidt, "and he knows he wears people out. He just can't help it."
Nemelka himself says, "Some feel I am a little weird."
Nemelka, a former construction worker, postal worker, teacher, social worker, state legislator and investment banker, brought a football coach's intensity and passion to the donor cause. He once literally got down on his hands and knees to plead for support in the middle of a meeting.
"That's David," says Barham, who is also Nemelka's sister. "There have been many times in meetings I wanted to tell David to settle down or stop it. He is a man of extremes. I love him, but I would not want to be married to him. But if he was not passionate, we would not have accomplished what we accomplished."
Nemelka has made his share of enemies with his aggressive, bombastic, take-charge style. He battled two government fraud charges for years in the early '90s and eventually won acquittal, and he was the first to sue a Mapleton explosives company, which he accused of contaminating drinking water and causing cancer in local residents, including his wife. Eventually, others joined the suit and won settlements.
"You either love David or you hate him," says Hawthorne. "He pounds the table because when he hears about someone dying because he or she didn't get an organ, it's so senseless."
The story of Nemelka's passion for organ donation began some 15 years ago, when he received a call from a local church leader telling him a neighbor needed a heart transplant as soon as possible. In those days, a $100,000 deposit was required just to be placed on a waiting list for a heart.
"I was distraught," says Nemelka. "We're brothers. We'll do what it takes."
Nemelka guaranteed the money. The community raised $90,000; Nemelka covered the balance.
But that wasn't the end of it. "I was told that even if we have the money there's no guarantee he'll get a heart, that it just puts him on the list," he says. "Why?! People were dying. There had to be hearts out there."
The neighbor wound up getting the transplant he needed, and Nemelka had found a cause.
"We've been blessed," he told his wife Ingrid. "I'd like to get involved in some humanitarian cause, like organ donation."
Nemelka began to study the issues and problems of organ donation. He collected articles, talked to experts and surfed the Internet for more information on the subject.
Meanwhile, Nemelka's relatives were dying of cardiomyopathy, a disease of the heart. Four first cousins died, including Mark Nemelka, who won a basketball scholarship to the University of Utah and dropped dead at 23 while playing a church softball game. Then the next two generations began dying — six second and third cousins. Among the survivors in the male Nemelka line, six required pacemakers.
"Now it becomes personal," says Nemelka. "Now I'm working for my grandchildren and children."
With his seven children all grown, he founded Quest for the Gift of Life Foundation in the fall of 2000 and hired Barham and Hawthorne to run it. He vowed to fund it for three years; it turned out to be 4 1/2, and he says it cost him more than $1 million.
Where did he get that kind of money? Nemelka started with nothing. He grew up on Salt Lake's west side in what his sister describes as a "very dysfunctional family." Their parents divorced and went through 11 marriages between them. Their mother Ruth worked three jobs, but the family was on welfare for years. David, a poor student with a gifted mind, quit school in the ninth grade. His dad, Nephi, flew from his home in Alaska to send him back to school.
"He came home and saved David," Barham said.
Nemelka had planned to follow his father into the construction business, but he scored so high on a standardized test, he was awarded a scholarship. He graduated from the University of Utah with degrees in sociology and behavioral psychology.
Nemelka worked full time in the post office while pursuing a master's degree, then took a job as a social worker supervising boys homes in California and Utah. He ran for the Legislature just to make changes in laws that would help boys' homes. He held office for two terms.
A friend convinced Nemelka to venture into the business world. Nemelka made his fortune in mergers and acquisitions. (Among other things, he helped establish Nintendo in the United States.) He retired a few years ago, which is when he took on the organ donor cause.
"He's one of those men who sees something wrong in the world and tries very, very hard to make a difference," says Hawthorne. "He has a huge heart."
Nemelka has been known to give new bikes to kids, help pay for boys' church missions, befriend troubled teens in the neighborhood and counsel them on a weekly basis. Married couples sought him out for counseling. Parents brought troubled kids to him for help. He served as Scoutmaster and bishop of his church ward.
And then the donor cause crossed his path.
From the beginning, his modus operandi was to work from within — he didn't want to be a threat to other donor organizations; he wanted to help them do their job and work within the system. Nemelka, Hawthorne and Barham visited the various organ donor organizations, hospitals, attorneys, doctors, legislators. Much progress had been made in the field over the years — anti-rejection drugs, improved surgical procedures, more trained doctors, government financial support of transplants — but it was still a jungle out there to actually obtain an organ.
"The only thing we didn't have was access to organs!" says Nemelka.
Among those they visited was former U.S. Sen. Jake Garn, who donated a kidney to his daughter and served as president of the national kidney foundation. "He was discouraged," says Nemelka. "He said the industry doesn't work together. There are all these disparate organizations for different organs, and hospitals competing against hospitals. There are lots of competing interests. They were fighting over who got the organs. There were 57 organ procurement agencies in 50 states."
Quest took on the issue of making organ donation legally binding. At the time, states required families to sign off on organ donation, even if the deceased had registered to do so. This clearly put a difficult burden on families.
"It was the wrong time to ask a family member," says Nemelka. "You've just had a tragedy, and you've got to make a decision like that!!!"
Bottom line: Only 70 percent of the families agreed to allow organs to be harvested from deceased. "They were losing 30 percent of the organs," says Nemelka.
Quest, among others, lobbied the Legislature to change the law. In 2002, Utah became one of the first states to change the law. Other states followed. A family can overrule only if there is good reason. According to Nemelka, 98 percent of those who register for organ donation actually go through with it, an increase of 28 percent.
With only 61 percent of the families of nonregistered deceased agreeing to organ donation, Quest made registration its next challenge. At the time, registration was done only when someone obtained or renewed a driver's license. That meant it was controlled by, of all organizations, the Department of Motor Vehicles in all 50 states. That presented a number of problems. For one thing, if someone died after hours, there was no access to records until the next day, which was too late to save organs.
Nemelka put up the money to fly in seven experts in the organ donor field, put them up in hotels and held meetings in his house to discuss a nationwide, online registry, which, among other things, would facilitate organ donation in the event someone died in another state. Now almost every state has an online registry that serves as a portal to other states.
To increase registration and awareness, the Quest trio also launched an intense education program, speaking to schools, companies, media, businesses, churches, chambers of commerce, legislators, women's clubs and city councils.
Along the way, Quest learned that 60 percent of everyone on a donor waiting list needs a kidney. They determined that an untapped source of kidneys was living donors. Quest set out not only to increase the number of living donations but also to promote Good Samaritan donations — donations offered to complete strangers by living donors. LDS Hospital tried the program. It has now spread to some 15 states.
To facilitate living donations, Quest promoted paid leave for living donors, allowing them time to recover without losing money. The Legislature passed it into law. More than a dozen private employers have agreed to do the same thing.
Bottom line: Living donations have increased 25 percent per year the past three years. In Utah, you have a 30 percent higher chance of getting a kidney than you do in another state.
Nemelka's Quest group has been honored by Best in State Awards and by groups in the donor field who have sat up and taken notice of their accomplishments. Now the group is no more. About two years ago, Nemelka began to get sick. He was hospitalized for one month with high blood pressure. Doctors said he was a walking stroke candidate and urged him to quit Quest. Family members urged him to do the same.
"I was brokenhearted," he says.
Quest has transferred its programs to other members of the Utah Coalition on Organ, Eye & Tissue Donation, so its work will continue.
"Quest did some great stuff," says Arata. "It's unfortunate it hasn't been able to continue with David's health."
"We were devastated," says Jeannene. "Without David's drive and force none of this would have happened."
As one might expect, though, Nemelka continues to do donor work anyway, working the media, pushing for more public awareness of his cause, pressing issues. "You know what I want to do next?" he begins, and he's off and talking about his latest project.
E-mail: drob@desnews.com