Rusty Lee, 34, and his wife, Tierra Jolly, 34, have a two-month-old daughter, Rocket Josephine Lee, who was born with Down syndrome and a heart defect. (Sarah L. Voisin/The Washington Post)

Millions of Americans of all ages and needs would be affected if Republicans in Congress succeed in overhauling major parts of the Affordable Care Act. And the latest maneuvering is only intensifying concerns.

But with Senate GOP leaders trying to retool parts of their bill — which was pulled back this week after support for a fast vote eroded — it isn’t easy sussing out exactly how an individual might benefit or lose. Would an uninsured home-care worker in Ohio get a tax credit that would make private health coverage affordable? Would the big changes envisioned for Medicaid funding cut out a New Mexico house painter with emphysema? What about the medical services a young West Virginia boy might require for the rest of his life?

Those with health care on the line are thinking a lot about the future, many with real anxiety. Here are some of their stories.

Tierra Jolly touches her daughter’s foot as husband Rusty Lee cradles 2-month-old Rocket. Given the child’s significant congenital health issues, the couple hope to get Medicaid coverage for her. (Sarah L. Voisin/The Washington Post)
A new mother worried for her baby’s medical needs

Tierra Jolly considers herself lucky: Two months ago, she gave birth to a beautiful little girl named Rocket. “She’s smart and tough,” Jolly says. “And she’s a really easy baby.”

But Rocket, born with Down syndrome, has serious health challenges. She has a heart defect that will require at least one operation. And her Down syndrome puts her at increased risk of leukemia, hearing loss and other problems down the road, including Alzheimer’s disease.

All of that increases the stakes for the insurance decisions facing Jolly and her husband, Russell Lee, who live in the District.

Jolly, who is on leave from a teaching position, currently pays the full insurance bill of $1,500 a month for herself and her daughter. That coverage will end soon; Jolly is staying home this fall because of her daughter’s medical needs. Lee is adding his wife to his insurance plan, which will kick in once he begins working in August at a local charter school. The question is how to best protect Rocket and the care she’ll need.

For financial and long-term reasons, Jolly and Lee think it might be better to have the baby covered by Medicaid. She wouldn’t qualify based on income — the family’s is too high given Lee’s job — but she might through a special program used by the District and all states to help children with disabilities or complex medical needs.

“We’re 34 years old, and we’re not going to be here for her whole life,” Jolly said. “We don’t know yet if she’ll ever have a job, let alone a job that offers health insurance.”

The new mother is apprehensive as she follows Republicans’ plans. The Senate legislation, like a House bill, would impose funding limits on Medicaid that would result in billions of dollars in projected cuts over the next decade.

Under a Senate “carve-out” for medically complex children, the proposed spending caps aren’t supposed to apply to someone like Rocket. Critics say such a carve-out is meaningless. Andy Schneider, a Medicaid expert at the Center for Children and Families at Georgetown University, said the “intense competition” for those dollars will force states to look for ways to slash program spending — either by reducing provider payments or services or by eliminating coverage for “optional” groups. The latter move would threaten resources for children like Rocket.

“We shouldn’t have to worry about all this,” Jolly said. “We just want to make sure our daughter is taken care of.”

A businessman fed up with paperwork
The Affordable Care Act mandates are “a waste of time,” says Dave Ratner, a business owner who nonetheless supports providing health care to most employees. (Courtesy of Dave Ratner)

Dave Ratner’s unlikely path to success started in 1975, when he bought an old gas station in Hadley, Mass., and started selling sodas out of the garage. Not long after, he expanded the operation to sell pet food. Today, Dave’s Soda and Pet City is a mini-chain of seven sprawling pet-supply stores with about 160 employees.

Ratner prides himself on being a good boss, so he says he could adjust when the ACA required him to extend health insurance to workers who put in 30 hours or more a week. He already was doing that for employees who clocked 35 hours, as required by a Massachusetts law.

Then came the paperwork — to prove a company is offering health insurance, to identify workers who have coverage through other means, to match an employee and dependents. Ratner hired a part-time human resources employee just to deal with the reporting requirements.

“All these mandates, they’re just a waste of time, a waste of energy and expensive,” he said from his home town of Agawam, Mass.

They’re not the only gripe the 65-year-old businessman has about the ACA. He’s convinced that the cost of the company’s insurance has skyrocketed because of the law — although some experts think premiums would be even higher without the ACA. He switched from the Blue Cross plan he offered employees when its rate went up 35 percent. The cost of the Cigna plan he substituted also raised rates but by a relatively modest 15 percent, and Ratner absorbed the difference because “I knew my folks who are making 15 or 16 dollars an hour just couldn’t do it.”

Republicans in Congress have pledged to torpedo the employer mandate, along with some administrative requirements. They also want to give states more flexibility on the benefits insurers would have to cover, which ostensibly would drive down costs.

Ratner is optimistic that Republicans will improve matters by returning some control to the states. He remembers the Massachusetts health-care law that predated the ACA — “Romneycare,” named for former governor Mitt Romney — as a well-run program that provided affordable options for businesses like his.

“I think it was a good system for the citizens of Massachusetts,” Ratner said.

Elizabeth Alcorn has health issues and concerns that she and her husband won’t be able to get insurance coverage in the future. (Norm Shafer/For The Washington Post)
A couple reach an age ‘where stuff happens’

Dentist Elizabeth Alcorn sold her practice in Charlottesville this spring because severe arthritis in her hands made it tough to work on patients. But she and her husband, Gerald Corridon, decided to stay on the business’s small-group plan until early next year. Although the premiums cost almost $2,000 a month, their out-of-pocket costs are reasonable and their doctors are in-network. Next year, who knows?

They are already worrying about future coverage given what’s happening on Capitol Hill. Both are too young for Medicare; she’s 56, and he’s 61. Both also have significant health problems; besides her arthritis, he is dealing with a recurrence of prostate cancer. She wonders whether those medical conditions will prevent them from getting another plan — and how much it will cost.

Elizabeth Alcorn and her husband, Gerald Corridon (Norm Shafer/For The Washington Post)

The answer is not straightforward. The Senate measure would bar insurers from rejecting consumers or charging them more based on preexisting conditions. At the same time, it would allow states to waive the “essential health benefit” standards that dictate which services must be covered. Those 10 categories — such as hospitalization, prescription drugs and lab services — are designed to ensure that insurance is high quality, but critics say they drive up premiums by requiring benefits that some people don’t need.

That is not Alcorn’s view. “At our age, we use prescriptions, outpatient services, labs, preventive tests like colonoscopies,” she said from her home in Stanardsville, Va. “We’re at the age where stuff happens.”

The Senate bill also could mean higher premiums, if she wants a plan that is comparable to her current one. That’s because insurers would be allowed to charge five times more for older consumers than for young ones. Under the ACA, the ratio is 3-to-1.

“More older people are going to get priced out of the market,” said Karen Pollitz, a senior fellow at the nonpartisan Kaiser Family Foundation.

Alcorn might be able to buy cheaper coverage than she and Corridon have now, but it would probably come with less-comprehensive benefits and a higher deductible. Regardless, with him still working as a general contractor, they wouldn’t be eligible for premium subsidies because their income would be above the cutoff.

“I’ve been really upset,” said Alcorn, whose concerns include her mother, now in a nursing home because of a recent stroke. The Senate legislation “is a disaster for my family.”

A former addict working hard to stay clean
Christine Ferguson focuses these days on her 5-month-old daughter, Reanna, and the treatment that is helping her stay off drugs. (Courtesy of Christine Ferguson)

After 13 years of battling addiction to pills, heroin, alcohol, LSD and cocaine, Christine Ferguson says she is clean.

That achievement has come with the help of 101 days of inpatient care and 10 months of intensive outpatient treatment. Three days a week, she still heads to the First Step Home not far from downtown Cincinnati, where she has counseling sessions and classes.

Medicaid has paid for it all, sometimes seven or eight classes a day, during which Ferguson says she has learned why she always returned to drugs, the behaviors she must avoid, the warning signs that she is slipping into old habits.

The Senate GOP health-care bill threatens to undermine the fragile foundation she is building. Medicaid now spends more than $900 million to treat opioid addictions and overdoses, and many people contend that the Senate bill’s proposed funding changes are dangerous given the nation’s burgeoning epidemic.

“I would lose the therapy and the people I talk to now,” Ferguson said. “They’re like my sense of security right now. I can always check in with them. They’re what keeps me sober, really.”

Ferguson, 33, said she became hooked on prescription opioids after injuring her neck in a car accident at 18. Life was one long downhill slide after that: using and selling drugs, other crimes, emergency room visits, running the streets. She had two children and another who was stillborn, saw a boyfriend murdered in her arms, lost a brother to a work accident and a cousin to an overdose.

The drugs and alcohol were all that mattered. “You have no one, you have nothing and it comes to where whatever you’re addicted to, that’s what rules you,” she says. “Whatever you have to do to get it, that’s what you do, because it’s the only thing that makes you feel normal.”

In 2015, a drug court judge sent her to an inpatient program, where she got sober and began to learn new coping strategies. She says she has been off drugs for two years except for a brief relapse nine months ago. She gave birth to a third child in January, and she and her daughter, Reanna, are living with family.

She has no idea what the future holds, especially if she loses her cocoon of support.

“I couldn’t say whether I could make it or not,” she said. “I can never say that I got this, or that I’ll never go back to using or not.”

Cheryl Kinsey gets a kiss from her son, Jensen, in between his play on the family’s trampoline. Kinsey stresses over the family’s future health-insurance options — and costs. (Tammy Shriver/Times West Virginian)
A ‘remarkable recovery,’ now 6 years old

Jensen Kinsey was born prematurely at 27 weeks, weighing just over two pounds. The delivery team rushed him to a ventilator so quickly his mother didn’t even know whether her baby was a boy or a girl.

He then spent the next 15 months in the neonatal intensive care unit of the children’s hospital at West Virginia’s largest academic medical center, WVU Medicine. He needed a breathing tube, a feeding tube, even surgery to crack his skull and give his brain room to grow.

Now 6, Jensen lives in a town about 20 miles to the south with his older sister and parents. Jeb Kinsey, 43, is a carpenter whose union’s Blue Cross Blue Shield insurance covers only a portion of Jensen’s care. Cheryl Kinsey, 45, works part time at a clothing store and an assisted-living facility. Neither job provides health coverage.

Jensen Kinsey still has significant health conditions stemming from his premature birth. (Family photo)

Medicaid fills in the gaps for the little boy, whose many health conditions stemming from his prematurity will require years of complex medical services, involving a host of specialists. If the program’s funding is capped, as the Senate Republican bill proposes, he may not be able to get all the care he needs, his parents and others fear.

“He’s made a remarkable recovery,” said one of his doctors, Lisa Costello. “But he needs to have close follow-up.”

His mother knows that if the Senate legislation passes, “it’s going to affect us.” Her husband recently was laid off, and his current job only runs through the summer. “Stressful? Oh my gosh, yes,” Cheryl Kinsey said. “Just to not know when or if we’re going to keep our insurance.”

Jensen’s breathing tube is gone, but he still gets winded easily. Medicaid pays for allergy medicines and the two inhalers he needs to keep his airways open. And he still receives all his nutrition through a button on his stomach because he never learned to swallow. His father’s insurance doesn’t cover the formula that provides that nutrition, six-packs that cost almost $10 each. “He goes through about four a day,” according to his mother, totaling about $14,600 a year.

When Jensen was in intensive care, Kinsey recalled seeing other babies with serious medical conditions. Some of the mothers were teenagers who only had Medicaid to help care for their children.

“What about those other babies? How are their families going to survive?” she said. “I just couldn’t imagine.”

Eric Jette, right, standing with a friend last winter, has health coverage for the first time in years because of the Affordable Care Act. (Courtesy of Eric Jette)
A house painter turned grateful patient

For most of his adult life, Eric Jette was an uninsured house painter. That changed in 2014 after his state of New Mexico, spurred by the extra funding made available through the ACA, expanded its Medicaid program to cover 240,000 additional low-income residents.

In Sante Fe, Jette began seeing doctors for the first time in years. The former smoker eventually was diagnosed with emphysema, plus an inherited disorder that can cause lung disease as well as liver problems.

Today he takes several medications a day, uses inhalers and round-the-clock oxygen, and gets a weekly drug infusion for his genetic condition. He works out as much as he can. “If it weren’t for the ACA,” said Jette, 57, “I’d be dead.”

But the Medicaid expansion that rescued him is jeopardized by the Senate health bill, which would begin to sharply reduce funding for both traditional and expansion beneficiaries within several years.

“This is a tremendous cost shift to states, and they don’t have the bandwidth to make up” these gaps, said Jesse Cross-Call, a senior health policy analyst at the nonprofit Center on Budget and Policy Priorities. “Within the first year or two, states would make difficult decisions and would start rolling back coverage.”

Still, Jette might escape initial cuts. In late 2015, a few months after being diagnosed with emphysema, he was ruled disabled by the Social Security Administration. That shifted him to the traditional part of Medicaid.

He remains very anxious about the future since the Senate plan — like the House bill — would turn to either per capita or block grant funding for both the conventional and expanded programs. No one can tell him what changes might occur in benefits, eligibility or the quality of health care.

“They are cutting a lot deeper than just the expanded Medicaid,” he said. “And anyhow, I have always managed to fall through the cracks.”

Dante Ficeti became uninsured when he surpassed the age limit for his parents’ health plan. He hopes Senate Republicans eliminate the Affordable Care Act penalty for going without coverage. (Dustin Franz)
A home-care worker hopes for good days ahead

Dante Ficeti likes his job. As a home-care worker who assists the elderly, the 26-year-old gets to spend a lot of time with aging veterans talking about his favorite subject, history.

But at $10 an hour, and not quite full time, it’s not the highest-paying position. And lucrative jobs aren’t easy to come by when you lack a college degree and live in a Rust-Belt town in northern Ohio, where finances are so tight that the local pool hasn’t been open for years. So for Ficeti, health insurance has seemed like a luxury he couldn’t afford.

“Ideally, I would like to have insurance if it’s cheap enough to buy,” he said. “But if I can’t fit it into my budget, I’d like to avoid it at all costs.”

The problem with that logic: Under the ACA, most Americans must carry health insurance or they are charged a fine come tax time. Ficeti thinks he might be on the hook this year for hundreds of dollars.

At his age, with no real health issues, he doesn’t worry much about being uninsured. But sometimes he does wonder: What if I get into a car wreck? What if I need a blood transfusion? And as a gay man, he said, the fear of HIV and other sexually transmitted diseases hovers in the background.

When he aged out of his parents’ insurance plan last year, his mother checked the ACA marketplace and got a shock: Coverage would cost him $300 per month — an untenable sum, although he probably could have qualified for a big premium subsidy.

Senate Republicans have said they want to ease the burden on young, healthy people who opted out of getting insurance. Whether that would mean a better price for Ficeti’s coverage is unclear.

His main gripes with the ACA are the mandate and tax penalty, which he considers an unfair burden on those who are already financially strapped. It’s part of a broader disillusionment. His town used to be propped up by the steel industry, with strong unions that advocated for working people, but that’s in the past. If the Senate health-care bill can help him a little bit, he’ll consider it a victory.

“I have quite a bit of faith,” he said. “I have a feeling that something good will come of this.”

(Jenny Starrs/The Washington Post)