Family battling cancer fears changes to health care law

By elderlaw
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As the United States Senate today takes up a Motion to Proceed with debate about repeal and replacement of the Affordable Care Act, many local families battling cancer fear the worst.

Families with medically fragile children and adults with pre-existing conditions are leading protests against repeal of the ACA, also known as Obamacare.

The Link family of Central Ohio is one such family. A video documenting the family’s medical plight was released earlier this month on YouTube. It is embedded above with this blog post.

Full-time work + battling cancer

Ryan Link works three jobs to keep his health insurance. Diagnosed in 2010 with a brain tumor, he underwent radiation and chemotherapy.

Under continued close monitoring, Ryan and his new wife Maggie Link had a baby boy, Nathan, in 2014. With Nathan just six weeks old, doctors told Ryan an MRI showed his tumor was growing and he required surgery to remove it, followed by a year of chemo.

Then in 2015, baby Nathan also was diagnosed with a brain tumor, a very large one. It turns out, Nathan suffers from the same genetic condition as his father – a mutation of a gene that normally prevents tumors from forming.

At just 11 months of age, Nathan entered Nationwide Children’s Hospital in Columbus for surgery to remove the brain tumor, followed by chemotherapy. His dad was in chemotherapy at the same time. Little Nathan’s hospital stay lasted seven months.

Maggie Link also works full-time, and the family uses her more affordable insurance to cover Nathan’s care. During the baby’s long hospital stay, their extended family mobilized to provide around-the-clock supervision for Nathan on the 12th floor pediatric oncology unit at Children’s. The family support enabled Maggie to get in the minimum 30 hours of work each week, required to maintain her full-time status and insurance coverage.

The Links fear a repeal-replacement bill will remove ACA protections for those who have pre-existing conditions, they won’t be able to afford their insurance. They fear a return of lifetime limits on coverage that the ACA did away with, and removal of the maximum out-of-pocket limits the ACA installed.

Either would bring bankruptcy and worse: the inability to keep fighting the cancer in both father and son with ongoing treatment.

Suggestion for legislators

“My husband and son are going to need lifelong medical attention. They’re going to need MRIs at the very least. They’re going to need potential surgeries, potential rounds of chemo. And the thought of this health care bill – it’s scary,” Maggie Link said.

“The amount we got billed for chemotherapy, our hospital stays and surgeries, we can never pay it out of pocket. There’s no way.”

She has a suggestion for Senators and members of the U.S. House of Representatives contemplating repeal and replacement of the Affordable Care Act.

“I think that anyone who wants to change the bill should spend one week on the 12th floor of Nationwide Children’s Hospital, with all those kids (with cancer). You see these little bald heads walking around the halls, and it’s just unbelievable,” Mrs. Link said.

“It’s not just about Democrats and Republicans. It’s not just about being wealthy or being poor. It’s about families and real lives. You’re playing with lives,” she said.