On the days when she feels good, when her elbows and knees aren’t stiff for hours and the bones in her feet don’t radiate near-crippling pain, Isabel Betancourt may skip the regimen of injections and pills that stop her immune system from destroying the cartilage and bone in her joints.
Missing her weekly injection of Enbrel and daily doses of other prescription drugs means Betancourt is risking the deformed joints and damaged organs that can come with rheumatoid arthritis.
The trade-off may not be worth it, Betancourt acknowledges, but it is sometimes necessary when you fall into a murky place in Florida’s healthcare system that policy analysts call the coverage gap because no government insurance program bridges it.
Rationing her medication makes a one-month supply last two months or longer. With prescriptions that can cost more than $5,000 a month without insurance, she has learned to get by.
“You find loopholes,’’ said Betancourt, 31, diagnosed with juvenile rheumatoid arthritis, an autoimmune disease with no cure, when she was in eighth grade.
Betancourt, now a part-time Florida International University employee and full-time student, is one of about 850,000 Floridians and nearly 5 million Americans caught in the gap, a no-man’s-land carved out by a 2012 U.S. Supreme Court decision on the Affordable Care Act, known as Obamacare.
For two years, Florida’s Legislature — meeting once again in Tallahassee this month — has refused to close the gap for people like Betancourt, turning down federal money to expand the Medicaid program to include her. Gov. Rick Scott has said he plans to sue the federal government, accusing the Obama administration of attempting to force expansion on Florida.
In South Florida, where the problem is particularly acute because it is home to the greatest number of uninsured people in the state, the Miami Herald found residents in the gap piecing together their own — largely inadequate — healthcare “systems.”
They use free clinics, visit community health centers when they can afford the discounted prices and, if all else fails, wind up in a hospital emergency room that can result in crushing debt.
They cut pills in half, borrow money or cash in retirement funds for co-payments, and wait months or even a year to see a doctor. It’s an exhausting and haphazard way to get medical care, especially when people are at their most vulnerable — when they’re sick.
The coverage gap was never supposed to exist under the health law. Medicaid expansion was going to bridge the gap between the poorest Americans and those who made enough to qualify for government-subsidized plans. But the Supreme Court’s decision to make Medicaid expansion optional meant that Florida and 21 other mostly Republican-led states chose not to expand the state-federal insurance program for the poor.
For two years, people in the gap like Betancourt have been caught in a conundrum: not poor enough for Medicaid, but not earning enough to qualify for Obamacare tax credits to make health insurance more affordable.
Many people don’t know they fall into the gap until they apply for a subsidized Obamacare plan. And what they find out makes no sense, say enrollment counselors. People who make more than they do are qualifying for government subsidized plans, but those who have less aren’t eligible for any help.
“When they do go and find out they’re in the gap, they’re angry that Obamacare isn’t working for them,’’ said Natalie Castellanos, an attorney and FIU instructor who runs a health law clinic that helps low-income communities. “We try to give them information, explaining the [healthcare] safety net, advocacy data explaining that they can call their legislator and ask for Medicaid expansion. People in that pool are very frustrated.”
Scrimping and saving
Unlike most Floridians in the coverage gap, Betancourt recently bought her own health plan after five months of being uninsured. Betancourt says she can only afford it because she lives with her father and doesn’t pay for rent or food. The student health clinic offers only the most routine of healthcare.
Betancourt struggles to pay the $192-a-month premiums for her health plan. Her other expenses include a student loan, car insurance and co-payments for doctor visits and prescriptions. She’s found ways to cut costs, signing up for a manufacturer’s assistance program to buy Enbrel — an immune system inhibitor that usually costs about $800 a dose — for just $10.
But she thinks she’s exhausted her options for scrimping and saving. “Many times,’’ she said, “I have faced the stress of paying the monthly bill on the same day my insurance was set to be canceled. Other times, my entire check … went straight to the premium.”
Obamacare was supposed to make healthcare affordable for more Americans such as Betancourt, extending Medicaid eligibility to most adults earning up to 138 percent of the federal poverty level, or $16,242 for an individual in 2015. Currently in Florida, Medicaid covers only strict categories of people: poor children and adults who are disabled, pregnant or parents with dependents earning no more than $7,000 a year for a family of three.
If Florida were to expand Medicaid, an additional 140,000 low-income adults in Miami-Dade County and 80,000 in Broward County would become eligible as long as they earn no more than $16,200 a year for an individual, according to estimates from the Urban Institute, a nonprofit economic and social policy research group.
Betancourt, who works 20 hours a week as a clerk in the transportation and parking office at FIU, falls into the coverage gap because she earns about $9,300 a year. If she made about $2,500 more, she would qualify for subsidies to make an ACA plan much more affordable. She’s not eligible for Medicaid because she is not disabled, has no dependent children and isn’t pregnant.
About the only way Betancourt can get Medicaid is if she moves to one of the 28 states and the District of Columbia that have adopted an expansion program. That’s out because she doesn’t want to leave her father, brothers, aunt and grandmother — the only family she has left after her mother died in 2008.
“As crummy as this may be, I know it,” she said of Florida. “I’ve had such a hard time here, I’m reluctant to sort of just move to New York or even California. I have no idea what is happening over there.”
Some in the coverage gap landed there after the Great Recession — and haven’t been able to climb out.
Carlos Cuervo, 40, lost a once-successful business, his house and his health insurance through “a string of bad luck” in the economic downturn in 2008. Though he once made $300,000 a year, he found himself divorced and living in a storefront, courtesy of a friend who owned the shopping plaza.
He hasn’t seen a doctor in seven years. When he came down with a skin condition that caused sunburn-like pain and muscle tightness, he consulted the Internet for self-diagnosis, popping vitamins, changing his diet and taking Benadryl in case it was an allergy.
“It was scary,’’ he said. “Normally you go to the doctor when something like that happens.”
Cuervo, now living in Medley, began a full-time sales job in March, which he expects will make him eligible for a subsidy to buy an Obamacare plan next year.
Standoff in Florida
Like so many thousands of others, Cuervo is also waiting to see what the Legislature will do — if anything. Although federal health officials say 11 million more Americans are covered by Medicaid this year than in 2013, Florida lawmakers seem no closer to a solution for those in the gap.
The debate — once a partisan issue — is now dividing Republicans, who control the House, Senate and governor’s seat.
Florida Sen. René Garcia, a Republican whose district includes a Hialeah ZIP code with the nation’s highest enrollment for Obamacare plans, is one of the chief drivers of the Senate’s proposal to accept federal funding for Medicaid expansion in Florida. House leaders and the governor oppose any Medicaid expansion, saying they do not trust the federal government to continue funding into the future.
But Garcia said it’s hard to deny the need when it’s in your own district.
“It’s very heavy on my heart,’’ he said, “because you see families who are having difficulties accessing the system because of the lack of insurance. I’ve seen women with breast cancer, and men with different types of conditions who will get treated at the emergency room. They get treated and stabilized — and then they’re sent home. They’re sent home with no medication, no treatment plan, no follow-up care. And they come to me trying to help them access the system.’’
For Betancourt, it doesn’t make sense that those who earn more would be allowed subsidies to help pay for their coverage while those who earn less have nothing in Florida. “If there’s people who are earning more than me, who have a little more breathing room than I have financially,’’ she said, “why are they getting help and I’m not?’’
She has spent years and countless hours trying to come up with ways to get the healthcare she needs, sometimes paying insurance premiums with her tax returns or retirement savings, other times discovering a government program or manufacturer’s discount, always fearful that the program will end or money will run out. And she has worked or gone to school — or both — the entire time.
She received Medicaid as a child, but became ineligible when she turned 20 in 2003. By then, she had begun working as a part-time cashier for the City of Hialeah. The pay was low, Betancourt said, but it provided access to health insurance — until she was laid off in April 2010.
She wanted to aim higher, and decided to finish her degree at FIU while working part-time. She qualified for COBRA through her previous job until November 2011, paying monthly premiums that ran as high as $381. She paid those bills with temporary unemployment benefits, and by cashing out her retirement plan savings.
Then she went uninsured for five months — a scary time, she said, when she worried constantly about a health crisis — until she heard about the Pre-Existing Condition Insurance Plan or PCIP, a temporary program created under Obamacare to offer immediate help to those denied coverage due to an existing illness.
When premiums rose to $281 in November 2013, she could no longer afford even that plan. She went uninsured again, this time with medical bills she couldn’t pay. In March 2014, when she likely would have qualified for Medicaid if Florida had expanded its program, Betancourt signed up for a private Humana plan financed by her tax refund. That plan was canceled in October 2014 after three missed payments.
Each time Betancourt went without insurance, she skipped doctor’s visits and medication, which led to more sick days, smaller paychecks — and less money to pay for a new health plan.
Last month, in March, Betancourt tried again, using her income tax return to buy a plan from Humana through the ACA exchange, though this time the plan has lower premiums because it is a bronze level that requires her to pay 40 percent of costs.
The premiums are $192 a month, which adds up to about 25 percent of her yearly income. Obamacare defines employer-provided coverage as affordable if the employee’s contribution is less than 9.5 percent of annual income. Betancourt pays more than 2 1/2 times that rate — without help from her employer or the government.
Though she lives with her father, and her aunt pays for her FIU tuition for a bachelor’s degree in broadcast journalism, Betancourt said she still has student loans. And she’s on her own for every other expense, from books to medication.
Some weeks, those expenses amount to more than she can pay.
On March 20, for instance, she received a bi-weekly paycheck of $361.45, after taxes, for 46 hours of work. But her white 2009 Toyota Corolla needed a new alternator, engine belt and radiator cap, which cost about $350. That left her with a little over $11 to stretch over two weeks.
With her next paycheck, Betancourt had to be sure she could cover the April premium for her Humana plan, and her monthly car insurance bill of $155.
She wouldn’t dream of asking her father to help. He already works two jobs.
“I’m too old to be asking dad,’’ she said. “I can’t be running to dad when he’s already spread thin.’’
Like Betancourt, more than half of the uninsured Floridians who would qualify for Medicaid under expansion are working, according to Families USA, a nonprofit that advocates for broadening health coverage under Obamacare.
And many are working in minimum-wage service jobs essential to the state, according to Cathy Kauffman, enrollment director for Families USA and the former director of Oregon’s Medicaid program for children.
“So much of the economy in Florida is tourism,’’ she said, “and so many people working in that industry fall into the gap.”
‘Everybody needs insurance’
There are others, though, employed in jobs that many would assume pay middle-class wages, who also fall into the gap.
Francesca Corr, 38, is a paralegal. A single mother, she lives with her four young children in Palmetto Bay, in southern Miami-Dade.
Her children are covered by Florida KidCare, the state’s Medicaid program for kids. But Corr is uninsured. To qualify for Medicaid, she would have to earn less than $9,943 a year. She earns $24,000.
When she applied for an Obamacare plan in March at the Doris Ison Community Health Center in Cutler Bay — where she had taken her 7-month-old son, Santos, for a check-up — an enrollment counselor told Corr that she needed to earn about $28,000 a year to qualify for a subsidy.
When she talks about the risk of an unexpected illness that could send the family tumbling into debt or leave her children without their only caregiver, Corr wipes away tears.
“This is not like season tickets to the Dolphins,’’ she said. “I mean, this is health insurance. What kind of country are we? Everybody needs insurance.”
For Betancourt, who has already had two major surgeries to replace joints decimated by rheumatoid arthritis, the fear of financial ruin or needing care she can’t afford hasn’t lessened during her two years in the gap.
Though doctors have advised her to have her left shoulder replaced, Betancourt said she would have to go into debt to cover the $6,000 deductible for the surgery — assuming she can continue to afford her current plan. So she’s going to do what she has done for years: hang on and hope.
“All my life,” she said, “insurance companies have said no.”
Miami Herald staff writer Chabeli Herrera contributed to this report. “Falling into the Gap” was written with the help of the Dennis A. Hunt Fund for Health Journalism, administered by the California Endowment Health Journalism Fellowships at the University of Southern California’s Annenberg School for Communication and Journalism.