Treating chronic illness with cough syrup: Life in the coverage gap

MIAMI — Genesis Matos Rodriguez wakes at 6:30 a.m. and shuffles to the kitchen, where garlic ropes hang on beige walls. Air cleansers, her grandmother calls them. Her mom lays out Robitussin cough syrup and a glass of Alka-Seltzer, substitutes for the prescription pills they can no longer afford.

Rodriguez was born with asthma and Middle Lobe Syndrome, which causes mucus to build in her lungs. Two years ago, her right lung collapsed; surgeons removed half. Her monthly medical bill to ward off fluids, including Pulmozyme and Albuterol, can hit $4,000.

She slipped into what policy analysts call the coverage gap. Three months before her 20th birthday, on an otherwise ordinary July day, the state declared Rodriguez independent and no longer eligible for Medicaid. Her mother, legally the head of their household, made $9,000 last year working part-time — a few thousand dollars short of qualifying the family for premium subsidies under the Affordable Care Act.

Nearly 4 million Americans live in this limbo of patchwork health care: They are not eligible for Medicaid; they don't make enough money to afford ACA coverage.

As a result, many low-income Americans with chronic illnesses are bracing to make it work for the next four years — or simply through the day. They swap prescriptions for CVS bargains. They rely on family remedies: whiskey for a sore throat, tea leaves for asthma. They tumble into debt when an ailment demands medical attention.

“They come to us with high hopes,” said Santra Denis, community health director of the nonprofit Catalyst Miami, “and expect to find a solution, a way to get insurance. We have to let them down.”

On a December morning, Rodriguez drowns her over-the-counter medley with red Powerade. She sits at a wooden table and breathes into the plastic nozzle of an Intrapulmonary Percussive Ventilator. Bursts of air and medicine open her airways. Medicaid funded the $10,000 machine. Refills, however, still cost hundreds. She often skips the recommended daily doses to extend her supply.

The sun climbs over Little Havana, creeping through her blinds, touching the poster of a white Porsche Cayenne and, above her bed, advice from her favorite writer, Henry Miller: “Every man has his destiny; the only imperative is to follow it, to accept it.”

Her destiny, Rodriguez believes, starts with auto mechanic training — with or without health insurance. Even if car fumes trigger asthma attacks. Even if asthma attacks send her to the emergency room. Even if a mere upper respiratory infection kept her home last week.

She quit running to avoid coughing fits. She ditched salsa dancing at the Batting Cage. She missed Art Basel, the annual Miami gallery parties.

But she won't give up school.

Eligibility

Before the Affordable Care Act passed in 2010, Medicaid eligibility requirements differed across the country. A low-income family could qualify for the benefit in California, for example, and lose coverage if they moved to Texas. In most states, poor adults without children did not qualify for Medicaid.

Obamacare sought to curb the nation's eligibility discrepancies with the Medicaid expansion, opening coverage to people earning 138 percent of the federal poverty line — and providing health insurance to millions more poor Americans.

But the Supreme Court struck down the provision, granting states the power to opt out. Twenty-seven states, including Illinois, have since expanded Medicaid eligibility, providing no-cost care to a larger pool of low-income workers. Democratic leaders say the expansion was meant to protect poor adults, who typically have no safety net unless they become parents. Republican leaders argue that it could strain state budgets and discourage people from working.

The coverage gap became a hot-button issue in Florida during last year's midterm elections. Then-gubernatorial candidate Charlie Crist, a Democrat, vowed to fight for the Medicaid expansion. Rodriguez, meanwhile, emerged as a reluctant symbol in Florida's Medicaid debate. In September, Crist visited her apartment, a subsidized housing unit above a public library. Her mother, Mariamee (who works part-time for minimum wage and also lacks insurance) sent him a letter about her family's conundrum: “We're too rich for Medicaid, too poor for Obamacare.” (Rodriguez missed the politician for school. She had a quiz.)

Crist lost to Gov. Rick Scott by a narrow margin. Scott, a conservative, publicly supports the expansion but has done little to push it through the Florida legislature. When he was re-elected in November, Mariamee recalls Rodriguez saying: “That's it. I'm dead.”

That month, Rodriguez applied for disability insurance, her last-ditch hope for stable coverage until she graduates from auto mechanic training in June and, hopefully, lands a full-time job with benefits.

Weeks later, she caught the respiratory infection, couldn't breathe and landed in the emergency room. The trip cost about $1,900. The antibiotics, $170. Mariamee sent the bills to the Department of Children and Families, which reopened her daughter's Medicaid through Florida's Medically Needy Program for the remainder of the month.

On New Year's Day, Rodriguez lost her insurance again. Mariamee started collecting January bills to send to DCF and prove her daughter's need again. That week, the state denied Rodriguez's disability application.

“It's like they need you to be in bed, covered in tubes,” Mariamee said. “It's like they need you to quit school and become a couch potato and lose any progress you've made for this to happen.”

Pursuing goals

This afternoon is Rodriguez's first day back to class since the respiratory infection struck. Anxiety grips her: “I'm at least three lessons behind,” she thinks. The five-pound “Modern Automotive Technology” textbook in her crossbody satchel helps. Learning, however, clicks in the garage.

She's the only woman in her class at Braman Motors Miami, a partner of the Lindsey Hopkins Technical Center, and starts a yearlong internship this month at a Braman dealership. Someday, she wants to open her own body shop.

For now, she works on her ‘94 Honda Civic: Beastie, a near-junkyard purchase for $1,000. She painted it matte black and installed red rims. It's not ready to drive — yet. For now, she takes the bus.

Rodriguez ties her dark, waist-length curls into a topknot. Mists herself with Axe Body Spray, “just like a man.” Buttons up her blue, short-sleeved mechanic's uniform, which hides the tattoo over her heart: Veni, vidi, vici.

“Stay warm, OK?” Mariamee calls. “Come home if you keep coughing.”

“I'll be fine, mom.”

“You have your inhaler?”

“I'll be fine.”

Life in the gap

Nearly 55 percent of Americans in the coverage gap work part-time or full-time, according to Kaiser data. Two-thirds live in a household with at least one breadwinner. The majority work for firms with less than 50 employees, which aren't legally required to provide health coverage. Many earn minimum wage. Many can barely afford to pay the rent.

Florida, like most states that did not expand Medicaid, offers no assistance to people without dependent children, except in rare cases. Young adults who grew up receiving the benefit often stop seeing their regular doctors once coverage halts.

When Crist lost in November, Catalyst Miami's Denis said, reality sank in. Floridians, she believes, will likely stay four more years in the coverage gap: “We felt defeated.” She works with 400 clients monthly. Ninety percent, Denis said, fall in the coverage gap. She can connect them to charities. To free mammograms, for example. But some require surgeries.

“It's the norm around here,” she said. “We see people who've always gone to doctors and need their prescriptions. … They lose access to that and don't have a way to get it back.”

Shahriar Shahzeidi, a Miami pediatric pulmonologist, has treated Rodriguez for nearly five years. Dozens of his patients, he says, live in the murky world between Medicaid and subsidies.

“Many are worse off than Genesis,” he says. “Many need a ventilator, which keep them breathing. Or maintenance on a ventilator. … There are countless needs not being met.”

Shasehdi wrote a recommendation letter to Florida's Department of Social Security: “Genesis's condition is chronic. … There is no cure. (It could) interfere with her daily life and job.” He worries about patients who search for insurance without relief. He watches them fall out of jobs, into hospital beds — and into debt.

“Genesis is a very careful person,” Shasehdi said. “She goes out of her way to avoid environmental allergens. But, I tell her, she needs to stay on her medicine. If she doesn't take her medicine properly. … Within six months, I'd expect she'll lose another part of a lung.”

One day at a time

Today's lesson in Braman Motors Miami garage: Build a circuit. Rodriguez jots shorthand instructions on her right wrist:

Salt

Tase

Ready

Land

Ground

She puts on plastic goggles and studies a printed diagram. Students in black work boots stand below an elevated PT Cruiser, fiddling with red gauge wire. Someone whistles “Pop Goes the Weasel.” A poster on the gray wall reads: DRIVEN.

“Wanna work together?” a classmate asks.

Rodriguez nods. They put the wire in a vice. She holds one end in her pink glitter fingertips. He aims the soldering gun. Smoke rises. Into her nose. Into her throat.

“Ah! It smells bad. Burnt plastic.”

The coughing starts. Rodriguez forces it down. Her mind wanders to a class she missed last week. Her classmates fashioned metal into rings. She stayed home playing Kingdom Hearts.

“I wanted to be here when you guys made jewelry,” she tells her classmate. “That would have been my favorite class.”

He laughs. The urge to cough vanishes. Victory, for now. She reaches for the soldering gun. Her turn. “It's really soft metal,” Rodriguez says, staring up-close at the wire. “It melts really fast.”

In these moments, she forgets her lungs. She thinks about her Honda Civic, Beastie. She'll fix the push-start button soon. The cylinders next. The process, like her health care options, will be slow and uncertain.

She will apply soon to body shops across South Florida — or get hired at Braman, if she's lucky. She will send medical bills each month to the state and hope to qualify for the Medically Needy Program. She will start sick days with Robitussin and Alka-Seltzer.