(NEXSTAR) — A woman who endured years of kidney disease on dialysis is now calling on lawmakers to enhance benefits for living organ donors.
Going under the surgeon’s scalpel to give someone else your organ is already a major sacrifice. But most employers don’t offer more than a week or two of paid sick time.
Due to a shortage of organ donors, patients with kidney disease can often wait up to five years or longer to get a kidney transplant.
According to the National Kidney Foundation of Illinois, nearly 3,400 patients were on the wait list for a kidney transplant in 2019, and only 788 of them received a transplant.
Monica Fox, who worked in the health care field for decades, learned of her diagnosis with kidney disease in the fall of 2013.
“You get that news, like, ‘hey, this might not work for you for five years,’” she recalled doctors telling her, “‘but we don’t think you’ll get a kidney transplant in that time either.’”
Fox spent much of the next three years of her life on dialysis while she waited for her transplant. That day came in 2016 after she matched with a deceased donor who had agreed to give her a kidney. Fox said her daughter had offered to give her a kidney, but she didn’t want to allow her to drop out of school or take the time off of work to go through with such a grueling process.
“She had to take time off for work,” Fox said. “She didn’t get paid because she was working part time, so that that could be a barrier.”
Not long into her time on dialysis, Fox immersed herself in the patient community and quickly became involved as an advocate: first, for herself; eventually, for others in need.
“When I went to get worked up for transplant, the first thing they said was, ‘You got to share your story, because you need a living donor. Because most people don’t live long enough to get a deceased donor transplant.’ And, you know, that was shocking.”
Most kidney transplants in Illinois come from deceased donors — a registry maintained by the Illinois Secretary of State’s office.
So long as the number of transplants from deceased donors continue to outnumber living donors, the time patients spend on the waitlist, and the costs to the medical system, will continue to add up.
Last month, the Illinois Senate voted unanimously to approve a measure that would provide up to $1,000 in tax breaks to businesses who provide up to 30 days of paid time off for organ donors. Advocates hope the incentive could encourage more living donors to sign up.
“We feel that this is an organ donor-friendly policy at the workforce,” Secretary of State Jesse White’s spokesman Henry Haupt said. “We feel that it definitely promotes organ and tissue donation.”
“Which is a fraction of what it cost to provide health care, and dialysis,” Morrison said. “Not to mention the human suffering, the loss of work and everything for someone who needs a transplant.”
Dialysis costs patients $90,971 in total medical costs per year, according to the National Kidney Foundation of Illinois. A transplant can cost $37,780. The foundation estimates Illinois taxpayers cover roughly ten percent of those costs through Medicaid spending.
Fox, who now works with the National Kidney Foundation, says a kidney donation helped her get her life back, and the cost for the state to provide tax breaks to remove barriers for donors would be worth every penny.
“It’s not a small thing, even for a relative, to give a gift like that,” Fox said. “It seems like a humane thing to do: to give time off to be down, to save a life. That allows that person to at least be able to maintain that living standard to not be interrupted while they do this.”
The Illinois House could take up the measure for debate and send it to the governor’s desk as soon as this month.
Advocates tell us some kidney donors went back to work within just one week of donating.
“We’re trying to encourage more employers to have an organ donor leave of absence for their employees,” explained Sen. Julie Morrison (D-Deerfield).
“Everybody should have that option. Everybody who works full time, should have that option,” said Monica Fox, a kidney transplant recipient.
In Illinois, most kidney transplants come from deceased donors.
Senator Morrison says if enough living donors signed up to give kidneys to everyone on the waitlist, and took the full 30 days off work, it would cost about $1,700 — and would actually save the state money.
Click here to register to become a donor.