Zelienople family welcomes Casey’s proposed bone marrow donation bill
For years, the Ramirez family, of Zelienople, and others like them, have had to wait anxiously for a phone call — one telling them a donor has come to their rescue and will provide matching bone marrow to save the life of an ailing family member.
That wait may be a little bit shorter if a bill proposed by U.S. Sens. Bob Casey, D-Pa., and Bill Cassidy, R-La., successfully advances through Congress.
Informally, it’s called the Lifesaving Leave Act. If passed, it would allow employees to take time off to go through the process of donating bone marrow, which may attract potential donors who otherwise would be discouraged from doing so.
The bill would amend the Family and Medical Leave Act of 1993 to allow eligible employees 40 nonconsecutive hours of unpaid leave for bone marrow donation activities over a 12-month period.
“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 news release. “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 family of Jackson “Jax” Ramirez is just one of the many potential beneficiaries of the bill. Jax, 9, has a rare, life-threatening genetic immune system disorder called IPEX, which can be solved only by a bone marrow transplant.
Since learning of Jax’s situation, the Ramirez family has been pointed to three potential donors, but all three backed out.
Jax’s mother, Melissa, is enthusiastic about the proposed legislation and believes it will significantly increase the pool of potential donors.
“This legislation will allow flexibility of those who may not have vacation or sick days,” she said. “I have met donors who would have been more open to joining, much like those in the trades or who may not have the financial means to feel as if they can miss work.”
Ramirez, a psychologist at Pine-Richland School District, is also hoping to gain the attention of Pennsylvania legislators by proposing the “Jax Act,” which would allow residents to register through the state Department of Motor Vehicles as potential bone marrow donors, the same way they can register as organ donors. According to Ramirez, this proposal is “in the beginning stages.”
“I started the 'Jax Act' discussions with (state) Sen. Jay Costa and (Rep.) Dan Frankel in the summer months,” Ramirez said. “Still trying to make headway, but definitely have interest.”
In the meantime, Ramirez is continuing to host public events to spread awareness of Jax’s situation and gather saliva samples from the public to determine whether their bone marrow matches someone in need of a transplant. One such event took place at a high school basketball game between Pine-Richland and Seneca Valley in January.
“I believe that Jax will find his match. They are absolutely out there in this world,” Ramirez said.
