Health Reform: Changing the Game for Pediatric Cancer Patients?

BY Jason Kane  January 13, 2012 at 5:53 PM EST

It looked like someone was hurting Cooper Cochran. The bruises seemed to be everywhere when Cherie Trout picked up her two-year-old from daycare one day. Then came the fevers and distended stomach.

And finally, test results: He had acute lymphoblastic leukemia. Acute because the cancer cells were packed tightly into his spinal column with a direct pathway to his brain.

The call from the hospital ended with more news — Cooper’s condition was so bad that Cherie would need to drive him to the UC Davis Cancer Center in Sacramento within an hour for his first round of chemotherapy. And so it began. The single mother of three spent the next 14 months and juggling Cooper’s hospital appointments and a job that kept the family afloat and — critically — covered by health insurance.

“We were already a paycheck-to-paycheck family so the financial burden has been huge,” she said. “I’ve met many families since Cooper’s diagnosis where they lose up to 40 percent of their income. As have I.”

But it could have been worse, according to the bipartisan Children’s Cause for Cancer Advocacy — especially before 2010 and the passage of some key provisions in the health care reform law.

To be certain, in the eyes of many politicians, academics and regular Americans, the health reform law doesn’t look like the right solution to what ails the health care system. And some of those critics who think the Affordable Care Act is too intrusive have their own ideas for protecting America’s most vulnerable patients. But to the Children’s Cause for Cancer Advocacy, the act clearly is going to translate into benefits for Cooper Cochran and his family — now and in the years to come.

As Maureen Lilly, the group’s executive director, sees it, some of the specific benefits include:

Job-Switching:

“The health care reform bill gives parents like Cherie the peace of mind to know that if she ever lost her job or switched jobs, Cooper’s health wouldn’t be put at risk. Under the old system, if you switched jobs, it’s possible you might not have been able to get health insurance under a new employer because of a preexisting condition.”

Pre-existing Conditions:

“The law contains a provision that prohibits companies from denying coverage based on pre-existing conditions. Prior to health care reform, many young adult survivors of childhood cancer trying to find coverage on their own were told they were ‘uninsurable’ as a result of their cancer, leaving one of our most vulnerable young populations at risk and unprotected. Cooper, however, won’t ever have to worry about being denied access to health care coverage.”

Survivorship:

“For children like Cooper – and the other 350,000 survivors of childhood cancer in the United States today, their battle isn’t over once they are “cured” of their cancer. Oftentimes, they face a lifetime of challenges from the late effects of their disease or treatment. In fact, two-thirds of childhood cancer survivors face late effects that can be severe or life-threatening. For this population, access to comprehensive health care coverage is critical.”

No Lifetime Caps:

“Finally, to protect families from the burden of sky-high, out-of-pocket health care costs, the law prohibits insurance companies from imposing lifetime caps on coverage. Previously, families like the Trouts could find that the many treatments and hospital visits would suddenly ‘max out’ their insurance coverage, forcing them to incur huge medical debt. Now that lifetime caps are no longer allowed, Cooper can continue to receive the best possible care throughout his life without worrying about hitting an arbitrary coverage ceiling.”

Steps Ahead:

While health reform was a “a critical step forward,” Lilly and her team would have liked to have seen a little more. They wish the law would have included more protections to ensure that childhood cancer survivors have coverage and access to comprehensive, long-term, follow-up care. Especially given that two-thirds of them face late effects “that can be severe or even life-threatening,” she said.

It’s a population that requires more screenings, psycho-social care and other services that a typical patient might not. For example, 27-year-old woman wouldn’t usually need a yearly mammogram, but the yearly test is crucial for a 27-year-old that had cancer as a child. Organizations like Children’s Cause continue to push for that kind of legislation.

In closing, one more note about Cooper: For the moment, he’s feeling fine.

“Cooper’s been in maintenance for about two and a half months,” Cherie said. “And we do a lot of drugs at home now, as opposed to coming here four times per week, which is great. And I’m back to working more hours, which is helpful financially for all of us.”

Not exactly a happy ending — yet — but a hopeful one.

Do you agree with Lilly’s assessment? Leave your thoughts in the comments section below.

More of the NewsHour Health Unit’s cancer series:

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