The department issued a new opinion letter Tuesday that states a healthy organ donor can use medical leave, as it’s laid out in the Family and Medical Leave Act.
“I am thrilled to hear this,” Bel Kambach, a recent liver-transplant recipient said. One of the reasons many people couldn’t donate to her: They couldn’t afford to take the time off work.
“This will change many people’s minds, especially those who aren’t financially secure,” Kambach said. But there are still a lot of reforms she wants to see in the U.S. transplant system.
Kambach is recovering from a July transplant at the Mayo Clinic campus in Scottsdale, Arizona. She received a new liver from a deceased donor in Arizona after three years of seeking a live donor in Minnesota.
Kambach needed a liver because of the illness primary biliary cholangitis, or PBC. It’s an autoimmune disease like lupus; the immune system attacks healthy parts of the body. PBC causes scarring, or cirrhosis, of the liver. Kambach struggled to eat and sleep and suffered extreme itching.
The Department of Labor letter is a response to a question from an unnamed source, seeking whether organ donation is a “serious health condition” under the Family and Medical Leave Act of 1993, according to the letter signed by Acting Administrator Bryan Jarrett.
“Organ-donation surgery … commonly requires overnight hospitalization,” Jarrett writes, “that alone suffices for the surgery and the post-surgery recover to qualify as a serious health condition.”
The law grants eligible employees up to 12 weeks of unpaid leave in a 12-month period. It can be used as parental leave following the birth of a baby or an adoption, or it can be used by caregivers responsible for sick family members.
After donating a kidney, most people can return to regular activities in two to four weeks, according to a Mayo Clinic transplant overview website. The liver regenerates itself after part of it is removed, and most people return to work and normal activities within two to three months.
“Organ donation is not something you want to talk about until it hits your family,” Kambach said. She and her sisters now actively promote awareness about it.
Kambach would like the U.S. to automatically enroll people as donors, with an option to opt out. Some countries already have that a default enrollment system in place.
Ninety-five percent of adults in the U.S. support organ donation, according to OrganDonor.gov, but only 54 percent are signed up as donors. Every day 20 people die awaiting a transplant.
Kambach would like to see other reforms in the transplant system, including how people are prioritized based on severity of their illness.
Her status plateaued, and she could not move high enough on the transplant list for a liver in Minnesota, even though her symptoms depleted her quality of life and her illness was not a result of her own actions, such as alcoholism, she said.
She wants to see other reforms, too. Transplant recipients need private insurance to cover the cost of lifelong, anti-rejection medications, Kambach said. Her meds cost $7,500 a month.
Kambach, who has a teenager, knows of other single mothers with PBC on Medicaid who aren’t eligible for a transplant because of their insurance status.
“How can I help these women? These children need their mothers,” Kambach said. “Laws, and this medical system, it’s not working for them.”
Meanwhile, Kambach continues to heal.
She’s still convalescent and sore, but more energetic than before her transplant, she said. “It’s been life-altering.”