Most of the people who take up worthy causes that save the lives of those in need of medical miracles have a story. It’s about hope in the face of tragedy. Maybe a family member or close friend died from a particular ailment, or perhaps he or she suffered its wrath firsthand and, having survived, then take up the fight so future generations—people they have never or will never meet—won’t have to.
Andy Talley doesn’t have one of those stories. Well, not exactly.
Though his was never touched personally by leukemia or lymphoma, Talley has singlehandedly improved the odds of survival for Americans who suffer from these and other diseases of the blood and bone marrow. As head football coach at Villanova University, he started the Devon-based Andy Talley Bone Marrow Foundation in 2010, a nonprofit that grew from the seed of his involvement in bone-marrow donor testing that began two decades ago.
“I was listening to these health shows at the time, and an oncologist came on and said so many people were in need of [bone marrow] transplants but there weren’t enough numbers of people on the donor registry,” he recalls. “I said, ‘I think I can do something about that.’ So we started testing our players [to become donors] in 1992.”
Each year more than 10,000 people in the United States are diagnosed with a life-threatening disease of the blood or bone marrow, and as many as 70 percent—whose best chance of survival is getting a stem-cell transplant—do not have a matching donor in their family.
With help from Talley’s foundation and the more than 30 other colleges now participating in his “Get in the Game, Save a Life” initiative, they are more likely to find the match they so desperately need.
“It’s very difficult to match people because of the genetic complexity,” says Nadya Dutchin, spokesperson for the National Marrow Donor Program (NMDP), which partners with Talley on Get in the Game, Save a Life. “It’s like matching DNA, so it’s a million times more complicated that matching organs. You’re actually looking for an immune-system clone … for someone whose immune system is failing them.”
The NMDP, which has more than 9 million potential donors in its “Be The Match” registry, recently completed its 50,000th transplant, and the goal is to have as many as 10,000 transplants per year—up from the 5,500 it facilitated in 2011. Its need, however, is two-fold: First, the registry needs more overall donors; and second, it needs a more diverse group, with more minority donors.
Presently, white patients have an estimated 93 percent likelihood of having a donor who is willing and able to save a life. Compare that with 73 percent for Asians, 72 percent for Latinos and 66 percent for blacks. The good news is that the registry is changing, according to Dutchin, with nearly 40 percent of the 650,000 new potential donors who joined in 2011 coming from diverse racial or ethnic communities.
“When a patient with a genetic disorder or blood cancer has ablative chemotherapy, it obliterates their immune system, which is why they need healthy cells from the donor,” she says. “What happens is they migrate back into the bone and begin to proliferate, thereby giving them a whole new immune system. The immune system can reject the patient, and that’s why you want to make sure they’re so closely matched.
“How we fix it is by adding more people into the registry so we have appropriate matches for people,” she continues. “I’ve been in the system for five years and I haven’t been called yet. It’s really a game of chance.”
The best match is an identical twin or, next, a sibling, according to Dr. Calvin Lu, a medical oncologist with Chester County Hematology/Oncology, an affiliate of The Chester County Hospital and Health System in West Chester. This minimizes the chance that the marrow will reject the recipient. In addition, highly effective oral medications and more advanced treatment programs have improved the likelihood of positive outcomes for patients.
“When people get intensive chemotherapy to treat the disease aggressively, it mows down the white-blood-cell count, but in the last 10 or 15 years we’ve come up with new drugs that accelerate the recovery of white blood cells,” says Dr. Lu, who is registered as a bone-marrow donor. “Now there’s less time having a lower count of white cells, so the recovery time has shortened the window for complications from infection.”
Although Chester County Hospital’s team of 12 oncologists does not do stem-cell transplants, it does actively care for patients recovering from treatment for acute leukemia and post-transplantation. In 2010, it treated six patients with acute leukemia, four patients with chronic leukemia and two patients with “other” forms of the disease, according to health-system records.
Blood cancers aside, patients who suffer from more common diseases such as breast and colon cancers are also benefiting from advancements being made here and at other area health centers.
“Twenty-five years ago people with advanced colon cancer might be given six to 12 months,” Dr. Lu says. “Now it’s two to three years, and we’ve had some people live five to six years with advanced colon cancer. It’s not a cure but it’s better than we have had before.”
In Villanova, Talley and his football players are gearing up for April 19, when the university will host an on-campus donor drive. Football players will canvass the campus to recruit students to become registered as marrow donors, a process that includes a cheek-swab test.
Talley’s Get in the Game, Save a Life goal for 2010 was to recruit 5,000 new registrants; the initiative garnered 8,800 that year, and also did approximately the same number last year. The efforts have yielded fruit, with dozens of players or students from Villanova and other participating colleges getting matched to donate.
“The interesting thing is that the same principals used in college football apply: Everybody has a job to do—the recipient, the doctors, the donors involved—there’s a lot of teamwork involved,” he says. “It’s very rewarding to see players donate marrow to save a life. Over last the last four years we have had 60 transplants that we know about through football players.”
Example: dual-sport Villanova “superstar” Matt Szczur, who played wide receiver and special teams for the football squad and also was a standout baseball player. On the football field, he Wildcats were gearing up for a playoff run in 2009 when Szczur—a registered marrow donor—learned he was a match for a 15-year-old girl with leukemia. He agreed to donate, even though the proposed timeline would have meant him bowing out of the team’s playoff run.
As it turns out, the transplant had to be postponed till spring. So Szczur was able to participate in postseason play, including the FCS National Championship game against Montana—a game in which he scored two touchdowns, among other highlights, as the game’s MVP. He ultimately did donate marrow to the young girl, though it did force him to miss 10 baseball games that season.
His act of kindness did anything but hurt his career prospects. In January 2011 he signed a $1.5-million deal with Major League Baseball’s Chicago Cubs. And based on how most people feel after donating, his gift was likely worth much more to him.
“I’ve never heard a donor say ‘I wouldn’t do it again,’” says Dutchin. “In fact, they become some of the best volunteers and advocates we have. … For patients and their families, you cannot put a price on hope, and there’s a level of humility noticed in all these families—that a stranger would do this for a loved one—regardless of the outcome. Whether they respond well to treatment or have complications, the families understand that what a stranger did was truly heroic.”
Some people have heard “horror stories” about the donation process, though the process is not nearly as painful or barbaric as movies have made it out to be, according to Dutchin. The overwhelming majority of donations are done intravenously, where the blood is taken and filtered, then reintroduced to the donor’s body. This technique does require donors to receive advance injections of filgrastim, which stimulates the bone marrow to increase production of to-be-harvested cells. About 24 percent of donations are taken by syringe from the back of the pelvis, and even though this does leave some donors with a backache, Dutchin has a rule of thumb about one’s recovery: “If you save a life, take a day off of work.”
For Talley’s part, he is proud of how his foundation has grown, but he’s just happy to help in some small way. To hear him tell it, he is most inspired by the selflessness of those who take action.
“All of our work is with young people who are learning how to go into the community and help out,” he says. “I get many e-mails from people who have donated or called me to say thank you for the giving them the opportunity to save a life.”