Outside the Beltway, a reporter listens to forgotten voices amid the debate over ACA

Washington’s been in limbo for months (years, really) on repealing the Affordable Care Act. Should they? Can they? Will they? The individual mandate has been repealed. Last month Congress temporarily suspended three ACA taxes as part of its budget deal. The Trump administration declared last fall that subsidies to insurers would not be paid. But requirements are still in place. Insurers still have to cover preexisting conditions and young adults, and offer subsidized (cheaper) plans to low-income Americans. With taxes gone, who pays for all that?

Then there's Medicaid. Republicans want to put the program on a major diet, implement work requirements, and restructure payments to block grants. States that expanded Medicaid fear that would result in less funding, forcing them to cover fewer people or scale back benefits. After several failed repeal attempts last year, lawmakers put Medicaid reform on the back burner, promising to revisit the issue this year.

This partial dismantling of ACA creates a lot of questions. The indecision has created confusion and angst among patients, providers and insurers. They don’t know what to expect.

For my National Fellowship reporting project, my team traveled to four communities to chronicle the impact of Washington's indecision on patients and families. Over and over we heard the same thing: people feel forgotten. They feel Washington is not listening. They believe lawmakers making decisions about their health care have no idea what's happening in homes, clinics and hospitals across America. Their frustration prompted us to call this 14-part series of reports "Forgotten Voices."

In Maryville, Tennessee I spent the afternoon with Matt and April White and their four-year-old twins. Matt's employer pays for his insurance. Their kids are on Medicaid. April shops around on the ACA marketplace but can't afford rising rates. Their budget is tight because she had to quit work to stay home with their premature twins, one of whom has a serious medical condition. They're worried that if Medicaid gets scaled back they'll lose it since they barely qualified. Their son needs a fifth surgery that they can't afford.

In Albemarle County, Virginia, Beth and Samuel Daane told us their middle-class income can't support the $4,000-a-month health premium they face. It's triple what they paid last year for the same coverage, and nearly three times their mortgage. According to a Kaiser Family Foundation review, the Charlottesville area has the most expensive ACA health insurance plans in the country. That's no surprise — the Congressional Budget Office predicted premiums would soar and 13 million would lose coverage with the repeal of the individual mandate.

Michael Dudley, president and CEO of Optima, Charlottesville's only insurer, blames Washington. He told me they raised rates dramatically because his small company tried to provide coverage in an unstable market after the big insurers pulled out. Still unsure if the Trump administration would repeal the ACA or its subsidies, Dudley says his company had to cover their bases. But the financial impact on families is devastating. We followed them to Washington as they sought answers and lobbied for lawmakers to fix the market uncertainty.

In Los Angeles, we found more people with the same concerns as rural Kentucky. If Medicaid funds get cut, so do services at community health centers like the UMMA clinic we visited in South Central Los Angeles. These clinics are a lifeline for poor and working class families. UMMA's two clinics see 7,000 patients a year, many of them infants, toddlers and school-age children who would not otherwise get their checkups and shots. Sixty percent of their patients are on Medi-Cal, California's version of Medicaid, and the federally funded Children's Health Insurance Program (CHIP). Another 15 to 20 percent of patients are covered by “My Health LA,” the county's free alternative for people who can't otherwise get insurance.

UMMA pediatrician Dr. Sahar Abdelrahman told me that what happens in Washington "trickles down" and affects her every day. She's worried about her youngest patients — but not just who pays their bill. While her patients have coverage, they don't always have access to care.

"You'll see people trying to bring their kids in but they can't. They have to work. Or they don't have bus money to get in. So when we don't see them for months or years at a time, it's a reflection of what's lacking in that family's life preventing them from coming in," Abdelrahman said. "So it's not just a matter of 'Are these services covered?' Are we covering the ability for them to get on the bus and come here? Are we able to do something so they can be able to take time off work to be able to do that?"

Larger questions, left unanswered.

Half of Los Angeles County children ages 0-5 depend on publicly funded health insurance to pay their doctor bills. Mayra Alvarez, president of The Children's Partnership, told me there's a real chilling effect when patients are confused about what's happening in Washington. Even when Congress doesn't act, parents hear “Obamacare is going away” and don't take their children for check-ups because they think they don't have insurance.

In LA, we met Balbina and Jose Hernandez at home with their sons: 8-year-old Caleb, 5-year-old Gadiel, and 2-year-old David. We caught up with them at home after school, munching on strawberries and cucumbers they got free from a local farmers market, with vouchers from their health clinic. Several clinics we visited offer nutrition programs like this to help keep patients healthy. Programs like this would be among be among the first to go if Washington cuts Medicaid or converts it to block grants, forcing states to make tough choices about eligibility and benefits.

Meeting people like Balbina, Beth Daane, April White and their families help me realize that there are so many more voices to be heard.

[Photo by Carl Wycoff via Flickr.]