A little-known marrow program needs a few good donors to save lives.
Jim Meyer was no stranger to blood disorders. In 1987, the Rockford firefighter watched his mother lose her battle to leukemia, a disease that, years later, claimed his sister Kathy at age 54, and Karen at 49. So when Meyer, now 51, was diagnosed three years ago with myelodysplastic syndrome, a life-threatening disease that often turns into leukemia, it wasn’t a complete shock. “I thought it could happen,” he says.
Meyer isn’t alone. Every year, 10,000 people in the United States are diagnosed with life-threatening diseases such as leukemia or lymphoma. When they don’t have a suitable donor in their family, their best option for a cure is a transplant from an unrelated marrow donor.
Margaret Shannon, recruiter for the Be The Match program at Rock River Valley Blood Center (RRVBC), says more than 12,000 searches were conducted through the Be The Match Registry last year, by patients looking for a matching donor or donated cord blood unit. Only four out of every 10 patients receive the transplant that could save their lives, mostly because there is no match for them.
Even though there are more than 8 million donors and 160,000 cord blood units available through the Be The Match Registry, there’s a great need for more. Some tissue types are uncommon or rare. “It’s a huge problem,” says Shannon. “Thousands of people look at the registry every day, in hopes of finding a match. We need more donors. A lot of people think it’s a great program, but then they don’t get around to being part of it. But when they know someone in their church or community, for example, who needs a transplant, they join the registry to see if they can help.”
Be The Match
Be The Match is the new name for the registry operated by the National Marrow Donor Program (NMDP), which teams up with 527 network partners around the world, including leading transplant, research, donor, collection and apheresis centers, as well as cord blood banks, recruitment groups and cooperative registries. The RRVBC, which serves hospitals in northern Illinois and southern Wisconsin, is also the region’s only recruitment, donor and apheresis center for the NMDP.
Besides Rockford, the nearest NMDP donor centers are in Milwaukee, Chicago and Iowa City, Iowa. “Most blood centers are not involved in this type of thing,” says Shannon. “We were ahead of the curve.”
A marrow transplant can be a life-saving treatment for people with leukemia, lymphoma and many other diseases. Treatment for these patients begins with chemotherapy and/or radiation to destroy their diseased marrow. Then healthy marrow from a donor is put directly into the patient’s bloodstream, where it can begin to grow and function normally. Marrow produces the blood-forming cells that transplant patients need. The immature marrow stem cells can develop into any of the cells present in the blood stream: red and white blood cells and platelets. There are three sources of blood stem cells: bone marrow, the circulating blood (called peripheral blood stem cells, or PBSC) and umbilical cord blood.
The Donation Process
The most common procedure for collecting marrow cells from the circulating blood can take place at a hospital or blood center. PBSC are collected through apheresis, a process that removes blood from your arm, collects the blood stem cells, then returns the remaining blood to your body. A less common way to collect these cells is through an outpatient surgical procedure performed at the hospital in which the donor is under anesthesia during the collection.
To join the Be The Match Marrow Registry, donors must be between 18 and 60 years old. They must complete a registration form, provide contact information and health history and sign an agreement to join the registry. Donors provide a sample of cheek cells for tissue-typing and undergo a complete physical exam. Those identified as a match for a specific patient are thoroughly educated about the procedure; There is no cost to the donor.
To help defray the cost of tissue typing those who join the registry, the RRVBC relies on fundraising events. One of the biggest is the Red Shoe Run for Donor Awareness, a 5K run and 1-mile fitness walk held in Rockford every April. The Red Shoe Run was started by a group of area residents, including Bobbi Smith and her husband, Charles, who lost two granddaughters who were waiting for liver transplants in 1993 and 1994. When the Smiths’ daughter, Carrie, died in 2002, they decided to donate her corneas. Later, they helped start the run event for donor awareness.
Shannon’s job as the chief recruiter is to get people interested in becoming donors, and it’s no small task. She travels around roughly 100 miles of territory throughout northern Illinois and southern Wisconsin, working with colleges and other groups to set up marrow drives. “I like that it’s helping people and it’s making a difference,” says Shannon. “I like working with the public. I feel very honored to work with people who’ve taken time out of their lives to try and save someone else’s life.”
She also works with blood donors, who make ideal candidates for bone marrow donation. “We find that blood donors are good, because they understand the connection between giving up their time and saving lives,” she says. The RRVBC conducts between 15 and 20 marrow-only drives each year, but people can sign up at any of the four RRVBC locations or participate in one of their mobile blood drives.
The need for marrow donors is dire. The National Marrow Donor Program has a goal to have 10,000 transplants performed every year by 2015.
Shannon says there’s a one in 200 chance that someone will be asked to donate marrow when they sign up with the registry. Phil Moe is one such person. The 22-year-old college senior from Macomb, Ill., joined the registry last year at the urging of his girlfriend, who also signed up during a drive at Northern Illinois University, where Moe is a physical education major. At the time, Moe didn’t know much about the marrow program, except that “someone was going to gain a lot from it.”
While some people can be members of the registry for 20 years and never get called, Moe was summoned last December. He went in for blood tests and a month later learned that he was a match for a 53-year-old woman with Hodgkin’s lymphoma. In February, Moe spent eight hours over two days at the RRVBC donating his marrow. “I was blown away by how easy it was,” he says. “It’s no more painful than donating blood.”
There are many misconceptions about becoming a donor that keep the numbers down. For one thing, people think it’s a painful procedure; it’s not. And no pieces of bone are taken during marrow donation. Most of the time, collection of marrow cells is performed through a procedure that’s much like donating blood, except that it takes longer. When the surgical collection method is requested, only the liquid marrow found inside the pelvic bone is needed to save a patient’s life.
“If everyone knew all of the information, no one would be lacking a matching donor,” Shannon says. “My goal is to get a match for everyone who needs it. It’s sad when someone doesn’t survive, who was waiting for a match, because treatment is available. It’s frustrating.”
Moe knows what it means to become a donor and hopes someday to meet the woman he helped. Today, he’s an advocate for the donor program. He helps out with various drives and tries to get other people involved by spreading the word.
“It was a humbling experience,” he says. “It came at a good time in my life. I was finishing up with school and looking for a job – there was a lot of pressure in my life. But this puts everything in perspective. It helped her, but it also helped me.”
Meyer received a marrow cell (bone marrow) transplant in August 2007. Today, the Rockford firefighter is back at work and feeling well.
Meyer knows how much the Be The Match program helped him, and has a simple message for those who contemplate donating: “Go ahead and do it,” he says. “It could save a life.”
Those interested in receiving further information about the donor program may contact Margaret Shannon, (815) 961-2341, or firstname.lastname@example.org. ❚