Jayne O'Donnell

USA TODAY

Once its patients were insured by the Affordable Care Act, the community health center in Whitesburg, Ky. opened on the weekends in 2014 and added optometrists and a dental clinic in 2015.

Van Breeding, the primary care doctor in charge of the clinic, says if his patients lose coverage in any ACA replacement, he’ll have to close on weekends and get rid of the newer services. Patients like Lee Sexton, an 88-year-old banjo player with black lung disease, will have to head to the far more expensive emergency room if they need care on the weekends.

The effects could be far more serious though, he fears.

"A patient with colon cancer may not mean much to a politician in Washington," says Breeding, director of clinical affairs at eight clinics run by Mountain Comprehensive Health. "But I'm from here and if we fail that person because we not able to get them screened at an early enough stage, it's a friend, it's a relative, it's an old classmate. We are all kinfolks here."

Uncertainty and confusion about the fate of the ACA and the expanded Medicaid coverage that came with it is raising fears among those have benefited. Even patients who are having trouble affording their insurance worry that whatever replaces the law will be worse, says Sally Okun, VP of advocacy for Patients Like Me, a social media platform for people with chronic conditions.

Nearly 60% of about 2,200 Patients Like Me members responding to an ACA survey last month said the law has helped them. Almost half said the ACA needs only minor modifications to improve it. Members can have any chronic condition, but most have serious conditions such as Lou Gehrig's disease, epilepsy and other conditions that require a lot of daily care, Okun says.

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"They identify the ACA as not being perfect but at least it is giving them coverage," she says.

Randy Ball, a Patients Like Me member with post-traumatic stress and bipolar disorders, says the main problems with the ACA are the people "caught in the cracks" because they either make too much to get subsidies to buy coverage on the ACA exchanges or too little to buy coverage in states that didn't expand Medicaid.

"But we had these problems before the Affordable Care Act," says Ball. "So we need to fix, not take (it) away completely.”

Patients aren't alone in their concerns. Doctors and hospitals have been overhauling how they deliver care to meet the requirements of the law.

Unitypoint Health based in Des Moines learned six weeks ago that they were part of a mandatory Centers for Medicare and Medicaid Services pilot project that will pay them a set amount for all hip surgeries, including rehabilitation. They will be rewarded if they come in under cost and penalized if they are over.

Now, as hospitals, doctors and clinics across five regions in three states set up processes to meet the requirement, its administrators are bracing to see if the project will still go forward. The CMS center in charge of the program is funded through the ACA and has been controversial.

Following the confirmation Friday of former orthopedic surgeon and Rep. Tom Price, R-Ga., to be the new secretary of Health and Human Services, "we could find out none of these (projects) are moving forward and that we are preparing for something we'll be unwinding," says Sabra Rosener, VP of government and external affairs for Unitypoint, which owns 33 hospitals and nearly 300 clinics.

Hospitals also stand to lose paying customers if Congress eliminates subsidies to help people pay for coverage or Medicaid expansion to all low income adults. Republican proposals for replacing the law generally envision funding Medicaid through block grants to states, which would likely lead to fewer benefits or people covered.

Philosophically, former HHS Secretary Mike Leavitt, a Republican, says he loves the idea of returning health care decisions to states. Practically, however, it's "very difficult" to do it with block grants.

Leavitt, a three-time governor of Utah, says Republican members of Congress asked him to come up with a formula to divide block grant money among the states when he headed the Republican Governor's Association in the mid-'90s.

"The process of splitting up a finite amount of money among states proved to be a fool's errand." Leavitt says he learned.

Now that 16 Republican governors have expanded Medicaid coverage under the ACA to everyone under the federal poverty limit, Leavitt says the Republican-led states that stood their ground against former President Obama's law won't want to lose out on federal funding.

Instead, he predicts a broader form of Medicaid expansion will replace block grants now that Price can give states more flexibility to design their programs than the Obama administration allowed.

Lee Sexton has arthritis in his back and walks with a cane after 34 years working underground in the coal mines, frequently crawling into narrow shafts.

He remembers being a child when the only health care was from the doctor who occasionally rode through the mining camps on a horse. He worries what would happen to much younger former coal miners if they lost health coverage.

"When I first started working, you just had to take it if you got sick," says Sexton. "It's so improved."

Breeding has talked to Sen. Rand Paul, R-KY, about the needs in his area, but says the former presidential candidate told him the ACA is too expensive. But Breeding asks, "What expense do you put on a life?"

Kentucky has long been one of the sickest states when states are ranked according to the health issues among residents. Appalachian Kentucky's cancer rate increased by 25% between 1984 to 2012 while it dropped by 20% nationally during that time, according to a recent study in the medical journal JAMA.

So the state had the most to gain when low-income residents could get subsidized health insurance or Medicaid when it became available to all residents starting in 2014.

"This is an area that got more benefit from the ACA than any other state per capita," says Breeding, chosen by Staff Care as the 2017 Country Doctor of the Year. "Some of these people never had insurance in their entire lives."

Leavitt says its too soon for people to get nervous.

"As uncertainty increases, so does anxiety." says Leavitt. "My first piece of advice is, 'Take a deep breath.' This is not going to unfold nearly as fast as people might think."

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