Questioning the future beyond Obamacare

Feb. 06--MARBLEHEAD, Ohio -- Taylor Wilhite is an 18-year-old college freshman who loves her psychology classes at Tiffin University and volunteering with Make-A-Wish Foundation. It's a life made possible thanks to three rounds of chemotherapy and a bone-marrow transplant nearly a decade ago.

Taylor and her mom, Amy, were among those publicly recognized by then-President Barack Obama in 2010 as examples of Americans who benefited from provisions in the Affordable Care Act at a White House event on the 90-day anniversary of the bill. As Republicans in Congress work to "repeal and replace" Mr. Obama's signature health-care legislation, the Marblehead family worries about what will happen to the provisions that helped Taylor, including barring insurers from denying coverage for pre-existing conditions and eliminating lifetime limits for coverage.

VIDEO: Taylor and Amy Wilhite

Taylor received a diagnosis of acute myeloid leukemia in March, 2007. Then 8 years old, she endured three rounds of chemotherapy and a bone-marrow transplant from an anonymous donor in Switzerland.

In the middle of Taylor's treatment, a social worker pulled her mom aside. Did she know if her family's insurance plan had a lifetime limit on coverage?

The idea that an insurance company could stop covering treatments was astounding, Mrs. Wilhite said. But there it was, in tiny fine print: The insurance plan through her husband's employer capped coverage at $1 million per person. When she called the company to find out how much they had spent, they were dangerously close.

"We weren't notified by the insurance company, hey you have this, or you're getting close," she said. "You were on your own to look at the fine print, and I don't think most people realize what that is. Insurance companies can say, 'This is how much we feel you're worth; this is what we're willing to pay for your health and after that, we're done, you're on your own.'"

The family negotiated a limit increase of $500,000, but the expensive treatments continued. The family navigated decisions about which specialists to see first and researched whether there were cheaper alternatives to the medications Taylor was prescribed. One hospital stay produced a $229,000 bill for room and board, not including any treatment.

"It hits your heart when you say, this is what this person is worth -- they are worth us paying $1 million," Mrs. Wilhite said. "You hear $1 million, [and think] when are you ever going to reach that? But by age 9, she had reached the million dollars ... I would have a little girl who would't have insurance or couldn't finish her treatment because they said, 'that's enough, we're not going to pay.' If they would have done that, who knows where we would be; but now she's a productive member of society, she's going to college, she wants to give back."

Taylor is studying to become a certified child life specialist and wants to work with childhood cancer patients -- a way to pay it forward for the countless people who helped her during treatment.

"They are the ones who go around and set up activities for the kids that are going through treatment," she said of her future career. "They also explain what treatment they're going to have, what their diagnosis is. I know when I was in there, it made my experience at the hospital better, so I want to do that for other children on the oncology floor."

Uncertain future

While her daughter's treatment was not interrupted or cut off, Mrs. Wilhite said she worries about what will happen to cancer patients if those provisions of the Affordable Care Act are reversed in any future health-care legislation.

Young cancer survivors like Taylor face a lifetime of care and checkups. The American Cancer Society estimated that, in 2016, there were more than 65,000 cancer survivors 14 years and younger, and more than 47,000 ages 15-19 living in the United States.

Taylor will see many doctors in her lifetime, even as she remains in remission. She has checkups with a cardiologist, orthopedist, and oncologist. She will have blood tests, electrocardiograms, and surgeries in her future.

Steroid regimens have made her bones soft, making her prone to injury and fractures. She will eventually need a hip replacement.

A Kaiser Family Foundation analysis released in December estimates that 27 percent of adult Americans under 65 "have health conditions that would likely leave them uninsurable if they applied for individual market coverage under pre-Affordable Care Act underwriting practices that existed in nearly all states."

In Ohio, that estimate was 28 percent of adults, or more than 1.9 million people, with pre-existing conditions that could have be disqualifying for coverage without the Affordable Care Act.

"We felt like we had done everything right. We carried insurance on her; we paid our premiums; we never thought it would be a problem where we'd have to micromanage [her care]," Mrs. Wilhite said. "[Now] if a doctor says we need to do this we just do it, there's no second guessing. If she gets sick we don't have to think, 'Is it bad enough to take her in, can we wait this out?' We don't have that worry anymore that it won't be covered or we won't be able to afford it."

The Wilhites worry about what will happen if certain provisions of the Affordable Care Act are repealed. If the ability to deny coverage for pre-existing conditions returns, will Taylor be able to be insured on her own plan? If she could get covered, would the premiums be affordable? If the lifetime limit returns, would the insurance company start fresh or could a plan count previous care costs against her?

Keeping such patient protections is crucial in future health care laws, wrote American Cancer Society Cancer Action Network President Chris Hansen in a letter to Congressional representatives. The letter was written in conjunction with leadership from the National Multiple Sclerosis Society, American Lung Association, American Heart Association, and American Diabetes Association.

"Patient protections that have been in place since 2014 prohibit pre-existing condition exclusions, guarantee issue, restrict premium ratings, ban annual and lifetime benefit limits, and prohibit coverage rescissions," the letter read. "These protections work in concert. For instance, protecting an individual from pre-existing condition exclusions while allowing plans to impose caps or rescind coverage weakens the goals of guaranteed affordable coverage or universal access to coverage for people with serious illness. We should not return to an insurance market that often excluded those who needed coverage the most."

The uncertainty is unnerving, the Wilhites say, but aren't just sitting and waiting. Like she did when writing to the-President Obama all those years ago, Mrs. Wilhite is sharing her family's story with current elected representatives, imploring them to be thoughtful when making changes to the country's health care landscape.

"I would tell them you can't put a price on health, you can't put a price on a human life," Mrs. Wilhite said. "We do things right, we carry the insurance, we do what we are supposed to do. So step up and do your part."

Contact Lauren Lindstrom at llindstrom@theblade.com, 419-724-6154, or on Twitter @lelindstrom.

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Taylor Wilhite, Amy Wilhite, ObamaCare, Affordable Care Act, Leukemia, Donald Trump, Lauren Lindstrom, american cancer society

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