Patients brace for post-Obamacare out-of-pocket health costs

Scroll down to watch a USA TODAY Facebook Live panel discussion on health costs after Obamacare.

A lack of clarity into what the Trump administration will do about the Affordable Care Act and drug prices is unnerving many patients with cancer and other chronic diseases, who worry that the alternative to high premiums and deductibles could lead to worse solutions than the high out-of-pocket costs they have now.

Assurances that people with pre-existing health conditions will still be able to get insurance through any ACA replacement plan offers only partial solace to many cancer and heart patients. They know the details of any plan will determine whether they are better or worse off financially.

"There are a lot of important protections in the ACA that people do like," says Kim Thiboldeaux, CEO of the patient advocacy group Cancer Support Community. "Suddenly you could get coverage. Even if the cost sharing was on the high side, it really felt like a relief."

Annual and lifetime caps on what insurers will pay for care are among the other aspects of the law that need to be maintained if not strengthened, says oncologist Clifford Hudis, CEO of the American Society of Clinical Oncology.

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The law didn't resolve all of the challenges, Hudis says, but the impending change causes anxiety.

Concerns extend beyond cancer patients.

James Harrison, 57, couldn't get insurance before the ACA because he'd had a cardiac bypass — a pre-existing condition.

He and his wife didn't buy an ACA plan the first year they were eligible, because they thought the premiums were too high, Harrison says. He's like many consumers considering buying plans before the open enrollment ends Tuesday.

Instead, Harrison bought an indemnity plan that only paid up to 50% certain claims. It didn't cover the cardiac catheterization he soon needed. He was billed more than $110,000, which the hospital is suing to collect.

"I am deeply concerned, because of my pre-existing condition, that President Trump will throw me to the sharks in a high-risk pool later this year," says Harrison, who owns a landscaping business in Summerfield, Fla.

Read more:

Cancer patients say they face high costs, risks when care delayed

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High-risk insurance pools, which were one of the only options for patients with pre-existing conditions before the law, are one of the most likely ways Republicans in Congress and the White House will address soaring premiums for those on the ACA exchanges. These pools were included in the legislation introduced by Rep. Tom Price, R-Ga., Trump's nominee to head the Department of Health and Human Services.

Health care economist John Goodman, who helped draft an ACA replacement measure co-sponsored by Sen. Bill Cassidy, R-La., is among those who believe the pools are needed to lower premiums for healthy people buying on the exchanges without financial subsidies.

Physician Adams Dudley, who heads the University of California, San Francisco's Center for Healthcare Value, says the pools won't lower the overall costs of care, however. Dudley will be at USA TODAY Tuesday at noon participating in a Facebook Live panel discussion on health care costs after the law.

"There's never been a risk pool funded well enough for it to be a stable solution," says Dudley. "You could put enough in risk pools and they’d be fine, but there isn't a solution that's cheaper than the ACA."

Harrison bought an ACA plan the year after he incurred the huge debt. He says his current plan has small co-pays for preventive care, but a very high deductible for non-preventive procedures. He and his wife are paying $975 a month. But he's no longer complaining about it.

As consumers pay more of the cost of their health care through higher deductibles and cost sharing, however, what that care actually costs has become more relevant.

Nearly three-quarters of the public think the cost of prescription drugs is unreasonable, according to a Kaiser Family Foundation survey in 2015. The average monthly cost for cancer drugs increased from about $5,000 to about $10,000 between 2003 and 2013, according to a 2014 oncology trend report by IMS Institute for Healthcare Informatics. Some top $30,000 a month.

Trump's vows to negotiate drug prices for Medicare and Medicaid is a step in the right direction, many believe. Joseph Ross, a physician and Yale School of Medicine professor, calls drug pricing a "huge issue that needs to be addressed."

But far more needs to be done: "Until we are ready to start talking about drug value, we’re negotiating around the edges," he says.

"Newly approved does not mean new and improved," says Ross. "That’s a mentality in our population."

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