Ruston transplant recipient lobbies for donor protection bill

Ruston resident Hillary Husband-Pickering received the gift of life by having a bone marrow transplant in 2014. She’s paying it forward by standing up for the rights of transplant donors by lobbying the U.S. Congress.

In May, she was able to address the issue with the Louisiana Congressional delegation as part of a virtual flyin hosted by Be the Match. Specifically, the fly-in was regarding HR7770, a resolution designed to give employment protection to transplant donors.

“This is happening all over the nation. I just happened to talk to the Louisiana delegation,” Husband-Pickering said. “My role was to let them know about this bill and to explain why it’s important to continue their support of the registry and those affected by transplants.”

The registry she refers to is the National Marrow Donor Program, or Be the Match as it’s more commonly known.

By the age of 20, Husband-Pickering had been dealing with blood cancers since her original diagnosis of leukemia at the age of 14. She also fought off non-Hodgkins lymphoma prior to enrolling in college, but when she was diagnosed with a more aggressive form of leukemia doctors gave her a bleak outlook.

“They said my last shot was a bone marrow transplant,” she said.

“When you are receiving a bone marrow transplant, it’s not matched on blood type or other factors. It’s very genetic. Usually a sibling is a match, but I don’t have siblings.”

She was entered into Be the Match, the NMDP registry. Some time later, she was matched with an anonymous donor who turned out to be retired Navy Commander Rob Badnais, who was a Florida resident at the time.

The transplant saved her life.

“What’s interesting about NMDP is that it’s federally funded and supported by Congress and has been for several decades,” Husband-Pickering said.

Be the Match takes on the role of advocacy in Washington, not only for purposes of funding the registry, but also aiding in enacting legislation that protects recipients and donors.

“The goal is that every patient have the best match and have the best chance to have the cure they need,” she added.

Some of the past legislation focused on other topics such as deferring federal student loan payments for transplant recipients.

Husband-Pickering has addressed Congress on prior occasions. The last time she spoke to the delegation, she addressed funding. She said the reception for that discussion and the current one was drastically different.

“When there are busy times in session like they were in May, we talk to a lot of the staffers,” she said. “Most of them reacted with the thought, ‘Why isn’t this already protected?’

“Let’s say you have to donate a kidney. You would be able to have that major surgery and that would be protected in some way,” Husband-Pickering said. “For stem cell donors, it’s a less invasive process.”

What they are asking with the Donor Job Protection doesn’t financially impact businesses. That includes 40 hours of non-consecutive unpaid leave. The national donor job protection makes it easy for both the employer and employee to provide what the patients need regardless of where the donor lives and works.

“Donor leave just makes common sense and it’s a great thing to get done. There is no fiscal impact or funding requirement. We are simply asking employers to give a person time off, just 40 hours, so they can save a life,” said Be the Match Chief Policy Officer Brian Lindberg.

This legislation would have minimal to no cost to employers. It would not require employees to take their established paid time off or sick leave, and it would not require employers to pay for leave to donate. It would merely ensure the donor’s job would be protected while they are involved in the donation process.

“There was a very positive reaction to the bill,” Husband-Pickering said. “I believe the phrase ‘no-brainer’ was tossed around a lot that day.”

She has been in remission for nine years now. Prior to this lifesaving procedure, she hadn’t gone more than eight months in remission since the age of 14.

She, along with Be the Match advocates, want to preserve the program. Part of that is to ensure donors like Badnais aren’t hesitant because of employment status.

HR7770 was officially introduced in Congress by its sponsor, Rep. Dean Phillips, D-Minnesota.

The latest action on the bill came in mid-May when it was referred to the Committee on Education and Labor, in addition to the Committees on Oversight and Reform, and House Administration.

The official terminology of the bill consists of:

• To amend the Family and Medical Leave Act of 1993 to permit additional leave for bone marrow or blood stem cell donation, and for other purposes.

Included in that is the amendment “An eligible employee may elect, but an employer may not require the employee, to substitute any of the accrued paid vacation leave, personal leave, or medical or sick leave of the employee for leave provided under subsection (a)(5) for any part of the 40 hours of such leave under such subsection, except that nothing in this title shall require an employer to provide paid sick leave or paid medical leave in any situation in which such employer would not normally provide any such paid leave.”

Husband-Pickering said there are 38 states currently that provide some level of protection that’s commonly called patchwork coverage. Louisiana has a certain level of coverage for stem cell donors.

“My donor isn’t from Louisiana. If my only match had been in a state that didn’t have those coverages, that may have been a barrier for my only match,” she said. “Just protect the job so they don’t have to worry about saying no. We’re trying to remove those barriers at a federal level to have universal protection.”

As it turned out for Husband-Pickering, who is now married to John Pickering, matching with Badnais was a relatively easy process. She received the transplant in 2014 and was able to recover in two months. She received her undergraduate degree at Louisiana College (now Louisiana Christian University) and enrolled at Louisiana Tech, where she earned a PhD.

She was able to meet Badnais six years after the procedure that saved her life. In fact, they met at her wedding in February of 2021, in Alexandria, where they formed a bond for life.

Her hope is that her story becomes the story for all patients who need this life-saving procedure.