Elle Crofton, who lives in the Kensington neighborhood of Philadelphia, was diagnosed with a rare blood cancer at age 25. Two years later, she received the only procedure available to cure her disease: a blood stem cell transplant. Her donor’s employer agreed to give her a few hours off to complete the lifesaving donation.
“Thankfully, I had the best outcome that could happen, being that I had a donor on the registry waiting to donate, she was willing to donate, and she was able to donate. She was able to take time off to do what needed to be done for it,” Crofton told the Pennsylvania Independent.
But with no federal legal requirement that employers give their employees leave for bone marrow and blood stem cell donations, she notes, not everyone is so lucky. “It just blows my mind that that’s what’s a major barrier.”
She is hopeful that a new bill sponsored by Pennsylvania Democratic Sen. Bob Casey will help eliminate that barrier.
The 1993 Family and Medical Leave Act guaranteed that people with medical and family emergencies can take unpaid leave without losing their jobs.
The Life Saving Leave Act, co-sponsored by Louisiana Republican Sen. Bill Cassidy, would build on the existing law to allow employees up to 40 nonconsecutive hours of unpaid leave annually to facilitate bone marrow or blood stem cell donation.
It is designed to give flexibility to donors to participate in predonation exams and labs, travel to and from donation sites, and recover from the process. A bipartisan House of Representatives version is awaiting action in that chamber.
“Too many people waiting for bone marrow transplants can’t find a match because donors can’t take time off from work,” Casey said in a Jan. 30 press release announcing the bill. “I’m fighting for this bill because every potential donor has the opportunity to save a life, and we must ensure the fear of losing your job is not a barrier to doing so.”
The legislation is backed by NMDP, formerly known as the National Marrow Donor Program, a nonprofit organization that both advocates for donation and manages a marrow registry.
Karen Kramer of Dresher, Pennsylvania, is a volunteer advocate with the group. She got involved in 2012 after her brother-in-law was diagnosed with a blood cancer and needed a marrow transplant. His first match declined to go through the donation process for unspecified reasons, but a subsequent match said yes.
“We got four extra years with him, which was incredible. A selfless donor provided their stem cells and gave us hope,” she told the Pennsylvania Independent, adding that she and her family now want to pay it forward. “The Life Saving Leave Act brings us one step closer to reducing a barrier for any donor who is willing to do something selfless to save a life. They shouldn’t have to worry about their job. So that connection of knowing what happens when a donor says no and knowing what happens when the donor says yes, freely, without any concern for doing it is something that connected for me, resonated, and I feel passionate about.”
Kramer said that because ideal donors are often younger, many matches who are contacted have to decline because they cannot take leave from work. “Often, those potential lifesaving donors are in jobs that are new, aren’t as stable,” she said. “We want to eliminate that barrier so that more potential donors say yes.”
She noted that organ donors are protected by the Family and Medical Leave Act and applauded Casey for his leadership in trying to extend protections for stem cell and marrow donations. “It’s a no-cost, nonpartisan, national solution to ensure that all patients have equal access to a lifesaving transplant,” Kramer said.
Kim Venella, a bone marrow transplant nurse practitioner at Children’s Hospital of Philadelphia, said in an email that she sees the excitement of potential matches and the disappointment when the donor becomes unavailable.
“We do not get the reason, but given the NMDP statistics on why people don’t donate when called, I can assume some is because of fear of losing their job,” she wrote. “When discussing stem cell transplantation in children, second best is just not good enough. Therefore, knowing less people will say no when called upon is amazing news! This bill is legitimately a life saver.”
According to Casey’s office, more than 180,000 Pennsylvanians have registered as potential bone marrow donors. “With this legislation, individuals confirmed to be a match for patients in need will be better able to participate in bone marrow and blood stem cell donation with little to no financial or operational impact to their employer,” it noted in a fact sheet.