NJ mom crafts bill to help daughter, other sick kids get insurance coverage
Children in New Jersey diagnosed with complex medical needs shouldn't have to wait months, weeks, or even several days to learn whether health insurance will cover medication, a procedure or equipment that could save their lives.
That's the gist of a proposed state law awaiting action in Trenton, spearheaded by a determined mother of five in Pennington.
"I could see why a lot of families just give up," said Pat Guerds, whose youngest child Kinsley has been battling a nonstop series of health issues since she was two months old.
In those years since, Guerds and her husband have been in the midst of their own battle — with insurance companies, basically every time it's recommended by healthcare professionals that their daughter utilize a certain treatment or tool to make her life somewhat manageable.
At 6 and a half, Kinsley has spent about a third of her life in the hospital. Guerds said doctors have said they've "never seen a brain formed" like Kinsley's, and it's producing a case they've never before encountered. So when a potential shot at relief is offered, Guerds said, the last thing they need is to spend hours on the phone, fighting for it, to no avail — with four other kids to care for as well.
Kinsley does not walk or talk. But she's "smart as a whip," according to her mother.
"The biggest struggle we have now is her gastrointestinal system," Guerds told New Jersey 101.5.
It took more than a year, but the Guerds finally managed to secure insurance coverage for an additional MRI of Kinsley's brain. Right now, they're battling for coverage of a pump that can feed Kinsley through her belly — the mechanism currently used to feed Kinsley has already resulted in multiple infections.
"They said if she doesn't use it 50% of the time, we're not giving it to her. But she can't use it 50% of the time because she gets sick, she throws up, she turns blue," Guerds said. "And I said if you don't give her the pump and she doesn't get her stomach moving, you're going to be paying for dialysis and organ transplants."
While at her daughter's bedside in the hospital, Guerds began scribbling down ideas for legislation that has now developed into an official bill in the Legislature, sponsored by Anthony Verrelli, D-Mercer, in the Assembly and Shirley Turner, D-Mercer, in the Senate. It was most recently referred to the Senate Commerce Committee for consideration.
"The goal is that my doctor writes a script that says Kinsley needs this, 72 hours later, it is given, and there's no back and forth," Guerds said.
Specifically, the measure requires that health insurance carriers provide benefits for individuals 18 and younger with diagnosed complex medical needs. Approval of coverage would be required within three days of receipt of a letter from a health care provider stating the service, testing, medication or equipment is necessary.
"It will actually save money for the insurance companies if they started to work in unison with their doctors," Guerds said.
While this move would likely make things easier for her daughter and her family, Guerds said she's also making this push for other families who "constantly have kids in the hospital."
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Contact reporter Dino Flammia at firstname.lastname@example.org.