By Anthony Cotton
The Denver Post
About 30,000 cancer patients in the U.S. could be helped by a bone-marrow or stem-cell transplant, but only about 3,000 have found a match. “We know there are matches out there for those other 27,000,” said Shannon Foley, executive director of the Denver-based cancer charity Love Hope Strength Foundation. “We just have to find them.”
Trying to improve the odds, the nonprofit is developing a global pool of potential donors by asking people at music festivals, rock concerts and other events to swab the inside of their cheeks to be tested as a match.
“If you don’t know about this, you won’t do it. And if nobody’s going to ask you, you won’t do it,” Foley said. “So we feel if we just go out and ask 500,000 people a year, we’ll find some people. And if we ask the same ones again next year, maybe we’ll find some more.”
The self-proclaimed “world’s leading rock ‘n’ roll cancer foundation,” LHS began almost five years ago, melding musicians and other movers and shakers in the industry to help fight the disease around the globe.
In that time, the organization has built cancer centers in Africa and Peru and is looking at projects in 40 other countries. Its work is funded, in part, by money raised by the likes of John Oates, Shawn Colvin and Mike Peters from The Alarm, who perform all around the world.
Spurred a few years ago by the story of a 9-year-old from Florida who needed a bone-marrow transplant, LHS began registering potential donors at rock concerts and music festivals. The group has expanded its reach by partnering with venues including Red Rocks Amphitheatre and such groups as Key Bank, recruiting donors at outdoor movies and sporting events like Avalanche, Nuggets and Rockies games.
There have been tangible results. The group’s roster of potential donors now numbers 12,000. From that pool, 93 matches have been made; 56 of those donors are from Colorado. Since the group began testing, only one matched donor has
Potential donor Rubi Hendricks of Denver swabs the inside of her cheeks at the Love, Hope, Strength Foundation booth at a recent Red Rocks concert. (Hyoung Chang, The Denver Post)
declined to participate. “We literally found a new way to save lives,” Foley said.
Free offers at events
And it’s a relatively simple fix. When people drive into Red Rocks, they receive literature with information on registering. Often, the concertgoers have been primed by Facebook or Twitter alerts from headliners, asking them to sign up.
If not, when they enter the arena, they can be lured to the LHS booth with enticements like free temporary tattoos or the chance to win an iPad.
At Red Rocks, an announcement asking for donors is always made during movies. At concerts, one is often made during set changes between the opening act and the headliner. This year at Avs and Nuggets games, a public-service announcement will be delivered in 30-second spots from the cast of “Saturday Night Live.”
Whatever the delivery, the whole idea is to get people to the booth. Sometimes, Foley says, it takes five or six encounters before a prospective donor agrees to a cheek swab.
“Initially, we just want to educate them,” Foley said. “I can’t tell you how many times people have come up and said, ‘I see you guys everywhere. What’s going on?’ Whether or not they sign up, we want them to know what this is all about.”
Part of the education process includes explaining what it takes to become a donor. There was a time when donating bone marrow meant a painful extraction process, often involving hospitalization.
Today, 70 percent to 80 percent of donations are peripheral blood stem cells, collected by removing blood from one arm and returning it the other after processing. Marrow tissue accounts for 20 percent to 30 percent of donations and is collected using a needle to draw cells from the pelvic bone under local anesthetic.
“People just don’t know that you can save a life just by doing something so simple,” says Seun Adebiyi, 28, an Olympic hopeful from Nigeria whose own life was saved by an umbilical-cord blood transplant two years ago.
Testing through the foundation is free. If the cheek-swab test were done in a hospital, it would cost at least $65.
Completed paperwork goes with the sample to bone-marrow registry DKMS Americas. The sample is good until the donor turns 60; if there is a match, DKMS contacts the donor, who can go to a local hospital for the formal extraction. For a variety of reasons, not every match results in a donation.
Foley said that in the past, people typically tested for a match only if they had a family member in need.
“But only 30 percent of people find their match through a family member, so what about the other 70 percent?” she asked. “Where are they going to find their donor?”
Focus on helping now
The foundation donates no money to cancer research. Though the group acknowledges that it and organizations like the American Cancer Society are both part of the solution, LHS feels its service is better focused on such things as buying a mammogram machine for a clinic in Tanzania, where women can come in for testing and treatment right away.
“There isn’t enough being done to make sure that people are surviving with what’s available today,” Foley said. “There are a lot of people working on a cure, but the cure for many of these cancers has already been found. We know the cure can come from early detection, so let’s focus on that.”
Likewise, with a deeper pool of potential donors, more stem-cell and bone-marrow transplants can be done, offering a cure for people — including one of the LHS’s founders, James Chippendale, a leukemia survivor who discovered his match in a small village in Germany.
“If it wasn’t for someone in Germany getting his cheek swabbed, James wouldn’t be here,” Foley said. “His cure was this guy. It existed already, it just had to be found.”
Registry in Nigeria
Some matches are more easily made than others. Asian-Americans and African-Americans are under-represented in the registry.
When Adebiyi was diagnosed with leukemia, his hope was to find a match for a bone-marrow transplant. When a donor did not emerge, he decided to take a more hands-on approach: Packing up hundreds of test kits and returning to Africa to seek his own cure.
About the same time, the umbilical-cord match was found, and Adebiyi’s doctors told him to call off his trip in order to immediately prepare for the transplant.
But he says he realized that there was more than his own health at stake.
“There was no one else to take my place if I didn’t go,” Adebiyi said. “Going to Nigeria, I thought, was an important first step towards creating a bone-marrow registry there. In the long run, if you’re thinking big picture, a bone-marrow registry in Nigeria could be a real game changer in the fight against leukemia, sickle-cell anemia and a host of other diseases. So we had to make that first step.”
The trip delayed Adebiyi’s transplant by about six weeks.
To prepare to receive the donation, he underwent a round of chemotherapy, then spent eight weeks in a hospital — “living in a bubble,” he says — while undergoing a second round of chemo and full-body radiation. He also was being given immunosuppressants as part of the clean sweep to prepare his body to accept the healthy new stem cells.
While LHS is willing to register anyone over the age of 18, the ideal donor is no older than 30. That’s because when a recipient receives someone’s stem cells in a transplant, “it’s like someone else’s DNA is running through their veins,” Foley says, citing examples such as a recipient’s once-straight hair suddenly changing texture after receiving a transplant from a curly-haired donor.
Jordan Garner, a 21-year-old student at the University of Colorado, registered, was tested and found to be a match for a baby girl who is less than a year old. Should Garner donate, when the recipient turns 21, she would be living with Garner’s stem cells — which by then would be 42 years old, Foley said.
“It’s definitely crazy and a little scary, but I like it,” Garner said, “knowing that I could be saving someone’s life.”
Garner decided to be tested to honor his sister Jen Garner, who was diagnosed with Stage 4 Hodgkin’s lymphoma in 2009. Chemo seemed to work, but the illness returned almost a year later. She received the news on the same day she had a job interview scheduled with LHS.
Jen Garner underwent chemotherapy again, this time beginning three months before the transplant. Unlike Adebiyi, however, she was transplanted with stem cells she created for herself after the cancerous ones had been zapped.
On June 7, 2010, she received her transplant, a procedure doctors often describe as the patient’s “second birthday,” in part because the recipient is almost literally starting over. Jen Garner is 31, but she is currently receiving “childhood” inoculations for such diseases as mumps and measles.
Must briefly stop living
Doctors stress that great care should be taken the first year after the transplant because of physical weakness, as well as the possible exposure to illnesses that come from public places such as airplanes or crowded restaurants.
But how do you tell someone who has been at death’s door to stop living life, even for the briefest period?
Three days after returning from the hospital after her transplant, Jen Garner’s body went into shock, a scary episode that nearly killed her. Even so, she soon flew to New Jersey to work for LHS at a music festival.
“I can’t sit still,” she said. “Life’s too short.”
Adebiyi says the cancer and the aftermath from the transplant, “raises a lot of questions about priorities.
“There’s definitely a psychological impact from what I’ve gone through the last two years,” he said. “It’s an issue a lot of us have to deal with in one way or another. It’s kind of like, ‘Now what?’ ”
Adebiyi hasn’t come up with a definitive answer to the question.
Now an attorney at Goldman Sachs in New York, he has marvelous career opportunities there for the taking, and there’s also that nagging desire to become his country’s first participant in a Winter Olympics sport, running a skeleton sled in the 2014 Games in Sochi, Russia.
Throughout his life, Adebiyi says, “I’ve always been a swing-for-the-fences kind of guy.”
Perhaps, he says, that’s what makes it so hard to realize that it may be time to sit out an at-bat.
“I’m going to have to develop a little more patience with myself and really just enjoy being alive and not worrying about having to spend every moment of every day trying to achieve something incredible.”
Still, he said, the games could be a platform for something much more meaningful.
“I wouldn’t be alive today if I hadn’t received a transplant,” he said. “I see competing as a way of getting people’s attention so they can focus on what the real story is.”
Anthony Cotton: 303-954-1292 or [email protected]