(TNS) — The bone marrow registry, and how it leads to people saving lives of strangers, can boost faith in the goodness of humanity.
“It’s kind of fascinating,” says Dr. Kevin Rakszawski, a blood cancer oncologist at Penn State Cancer Institute.
That’s because most people on the registry got there because someone they knew needed a transplant, but they weren’t a match. Then they forgot about it.
Years later they get a call requesting a donation for a stranger who may well die without the transplant. Many say yes.
But when they don’t, it’s often because they can’t get time off from work.
Pennsylvania Sen. Bob Casey has cosponsored a bill that would solve the problem by guaranteeing bone marrow donors up to 40 hours of unpaid leave.
Rakszawski says it would remove the last major barrier to bone marrow donation. All medical costs, and expenses such as transportation and childcare, are already covered for donors.
“That’s often the last missing piece that donors need,” he says.
Bone marrow transplants are used to cure blood cancers such as leukemia, lymphoma and myeloma and diseases including sickle cell anemia. It’s often the last resort.
People on the donor registry commonly ended up there because a family member or friend put out word of their need, and asked people to get tested as a possible donor. Or maybe they walked past a collection drive table while in college or at a mall.
It’s easy to get on the list, requiring only a cheek swab. About 9 million people in the United States, including 180,000 in Pennsylvania, have done so. Yet for those who need a transplant, it’s still hard to find a good match, with only a 25% chance even a sibling can provide one.
It requires a complicated genetic match. Much depends on race or ethnic background. For example, white patients have nearly an 80% chance of finding a match, according to the Gift of Life, a non-profit devoted to bone marrow transplants. But it drops off from there, with Hispanics and Asians having a less than 50% chance, and Black patients having only a 29% chance. If they find one, it often involves a stranger.
When people get a call requesting a donation — it happens about 10,000 times per year in the United States — there’s typically little time to waste.
The donation process usually requires 20-30 hours spread out over five or six weeks, according to Rakszawski. The first step is blood work to determine if the potential donor has the right proteins, or markers, to ensure the transplant won’t be rejected. It’s painless and takes about an hour.
When there’s a match, the next steps occur a few weeks later, over four or five consecutive days, with the donor receiving injections to stimulate their bone marrow to make more stems cells. On the last day, the donor receives an injection which causes the bone marrow to release stem cells into the bloodstream.
The next step is to collect the stem cells through a process similar to donating plasma. Two IVs are inserted and the donor sits attached to a machine for 4-6 hours. The machine separates stem cells from the rest of the blood, which then flows back into the donor. After that, the donor’s work is done.
Rakszawski says there’s a common misperception about bone marrow donation: In the past, it often involved a surgical procedure to extract the marrow from bone. But that’s rarely used today.
“A lot of people have a lot of hesitation about donating because they think it’s a surgical procedure and it’s painful. But it’s generally painless,” he says.
Some people experience minor bone pain from their bones being stimulated to produce more stem cells, although medication can ease that. Some people go back to work the day after donating, although some feel fatigued and end up taking off two or three days, according to Rakszawski.
“We generally tell people to allow a 2-3 day window after the collection until they’re back to 100%,” he says.
At Penn State Health Milton S. Hershey Medical Center, where Rakszawski is based, about 150 people receive bone marrow transplants each year. Another 40-50 need one but don’t get it for reasons such as not finding a match or their condition worsening before the transplant can take place.
The bill cosponsored by Casey, a Democrat, would amend the Family and Medical Leave Act of 1993 to include unpaid time off for bone marrow donation.
“Too many people waiting for bone marrow transplants can’t find a match because donors can’t take time off from work,” he says.
The Republican cosponsor is Sen. Bill Cassidy of Louisiana, a physician.
“Americans deciding to make a lifesaving bone marrow or blood cell donation should not have to worry about losing their job. Patients with life-threatening conditions depend on them,” he says.
As it stands, federal employees receive paid time off to donate. Many states give state employees paid time off, and some require private employers to give unpaid time off. Pennsylvania doesn’t give or require any time off, although it gives a tax credit to businesses that provide paid time off for donors.
At Penn State Hershey, Rakszawski and his colleagues meet each morning to discuss the status of matches for their patients. He’s had conversations with possible donors, including explaining it’s life or death, with little time to spare.
He agrees that lives commonly hinge on whether someone can get away from work.
“That’s really the last missing piece donors often need, so they can feel like there’s not going to be any adverse repercussions from donating,” he says.
