Editor’s note: This story ran in the Panama City News Herald in May 2016. Follow this link for sidebar and videos.
PANAMA CITY — Anita Jackson spent her 50th birthday at Bay Medical Center Sacred Heart Health System, agonizing over the lump in her left breast doctors told her “may or may not” be breast cancer.
She hoped for a resolution, but instead got a referral, which turned into a dead end. The oncologist wanted $146 cash because Jackson has no health insurance.
Jackson — in debt to Bay Medical and unemployed after leaving her job as a cleaning lady because of the pain — didn’t have that kind of money. As a result, she also didn’t have an appointment.
That was August. Eight months later, Jackson woke up in the middle of the night in extreme pain. When she looked down at her lump, she saw a deep red stain forming on her shirt.
At 1:30 a.m., she walked 3.7 miles from her home to Bay Medical. She didn’t bother calling an ambulance; she couldn’t afford the bill.
When she arrived, doctors rushed her through a series of tests. The results confirmed her fears.
Stage 4 breast cancer had spread through her body. The doctors gave her two to three months to live.
Jackson is one of about 800,000 Floridians who fall into the “coverage gap,” the consequence of a crack in the Affordable Care Act (ACA) created by a 2012 Supreme Court ruling.
Under the ACA, Medicaid was supposed to expand to include anyone who lived at or below 133 percent of the federal poverty line. People above that mark would make enough to qualify for the ACA health insurance markets. Between the two, everyone would have health care or pay a penalty.
But when the Supreme Court made Medicaid expansion optional, 19 states, including Florida, chose not to expand Medicaid, leaving people like Jackson — and an estimated 3 million Americans working and unemployed — in the coverage gap, according to the Kaiser Family Foundation.
The gap is a health care no-man’s land. Directors of the few clinics accepting uninsured patients in Bay County said patients often are required to make cash payments they don’t have or go without treatment, the insurance liability makes it too risky for doctors to treat them for free, and many of these patients are so beaten down from being told “no” they don’t look for treatment until they are very ill.
People in the gap are almost entirely reliant on charity for medical care, and charity is increasingly harder to come by as more people believe everyone has health care.
“Services used to allow a certain percent for charity,” said Robin Estes, executive director of BayCares, one local clinic that accepts uninsured patients. “The word ‘charity’ is like gone now.”
In Bay County, the cracks are starting to show.
Florida’s federal funding for Medicaid was reduced by about $400 million this year. Those cuts were passed on to hospitals that historically were subsidized. The effects have been felt already.
The Bay County Health Department in December asked the two Panama City hospitals, Bay Medical and Gulf Coast Regional Medical Center, to chip in $150,000 each for the Health Department’s low-cost emergency room diversion clinic. Bay Medical said no — the hospital already is facing $9 million in cuts in two years, according to CEO Steve Grubbs — and the clinic closed in January.
Four notable options still are available to the uninsured: PanCare Health, the Avicenna Clinic, the St. Andrew Community Medical Center and BayCares.
PanCare is a government agency offering care to uninsured, Medicaid and Medicare patients on a sliding pay scale.
Avicenna and St. Andrew both offer free primary care to uninsured individuals living at or below the federal poverty line. The St. Andrews clinic keeps files on 3,000 patients. Avicenna keeps files on 2,000 patients.
BayCares serves patients diagnosed with a severe condition needing immediate treatment, such as cancer. It’s a network of doctors in 10 counties who offer free care in exchange for protection from lawsuits. Of 300 doctors in Panama City, 200 are on BayCares’ list, providing $30 million worth of medical care annually, Estes said.
However, Dr. Neal Dunn, a former surgeon and current Congressional candidate who is also the chairman of BayCares, said it is becoming harder to recruit doctors and find funding for procedures like CAT scans or MRIs.
In need of $146
In the eight months between when Jackson was told she “may have cancer” and her Stage 4 diagnosis, she alternately worked and looked for help.
Shocked by her medical bills, she worked at a local fast-food franchise for a few months trying to scrape together the $146 to see an oncologist. Her employer always scheduled her for less than 15 hours a week.
Most of the money went toward motels — Jackson hasn’t had her own home since she was evicted from a trailer in Springfield years ago — and there was never money left over for doctors.
In December, she lost the fast-food job after calling in sick. A friend allowed her to stay with him in a small, deteriorating cottage they filled with colorful art to combat the dreariness of the hardwood furniture.
It wasn’t until her official diagnosis on March 9 that Jackson’s medical care came together. She was referred to the St. Andrews clinic, which took over her primary care.
She also qualified for BayCares for the first time, because she went from being a patient suspected of having cancer — a gray area where BayCares can’t help — to a cancer patient.
With Jackson’s paperwork squared away, BayCares moved swiftly. The found an oncologist in Santa Rosa Beach with time to add Jackson to his patient load and even arranged a driver to transport her. It was the first time BayCares had ever offered a patient transportation.
“The driver was real nice. She spent a good hour telling me it was going to be OK,” Jackson said. “She prayed for me and everything right before I went in.”
Nowhere to turn
St. Andrew Community Medical Center sees many people in the flux period in which Jackson spent eight months — patients who doctors and nurses suspect have a serious condition but can’t afford the tests to prove it.
There is Brenda Iles, who has been waiting a year for a CAT scan to determine what is wrong with her thyroid. There is Cathy Adams, another cancer patient whose treatment was disrupted when she moved. St. Andrews clinic director Carole Summey estimated the clinic has about 15 patients who need hernias or their gallbladder removed, 25 in need of a colonoscopy and 25 in need of a urologist.
A few years ago, the clinic could turn to Bay Medical to do many of these tests for free, but when the hospital was sold, cuts were made, Grubbs said. They scaled back, no longer offering some of the more expensive tests.
Grubbs said Bay Medical still does a lot. Last year, the hospital provided $73.645 million in uncompensated care, according to their records.
“In fact, in the past three months, we have provided $817,694 in free diagnostic testing for St. Andrews clinic, Avicenna, Health Department, after-hours clinic and BayCares,” Grubbs said.
In 2015, Gulf Coast provided a little more than $12.192 million worth of charity and uncompensated care, according to President and CEO Carlton Ulmer.
Even with more than $85 million of uncompensated care being offered between the two hospitals, Summey said there is still a demand for more. In 2015, the death rate at the St. Andrews clinic had a sharp uptick to 13 people compared to four in 2014, which has her worried.
Who should pay?
When it comes to indigent care, the question often becomes, whose responsibility is it to pay for the working poor?
Some think the answer lies in expanding Medicaid, which offers doctors some reimbursement, though not enough to put them in the black.
“Along with most of the health care industry, we support the expansion of Medicaid in Florida and other states,” Grubbs wrote in an email, pointing out that the cuts to Bay Medical could have been avoided. “The citizens of Florida pay federal taxes designed to compensate states for care provided through their Medicaid programs. Absent the expansion of Medicaid in our state, our citizens’ taxes are diverted to other states.”
Others say expanding Medicaid is not the answer. Dunn, who is running for office on the platform of dismantling the ACA, pointed out that on the exchange, premiums and deductibles are so high for the “affordable plans” the insurance is no more than “an illusion.”
Before the ACA, he said, “we just leaned it and did it. If a patient crawled in with a kidney stone or gunshot wound, of course we treated them.”
The finances, he said, were worked out later. Now, government paperwork drives up costs. He said repealing the ACA could help that.
In the meantime, Jackson is starting chemotherapy this month. Her doctor said she is an excellent candidate.
She’s not as optimistic.
“If we honest, nuh-uh; I don’t think I’ll be cured,” Jackson said. “But every day, I get one more day.”
She’s worried about surviving the chemotherapy. She’s scared, but she hopes her story matters.
“There are other people out there like me,” she said. “I think there are a lot of other people out there.”
—- Sidebar: Stories from others like Anita —
Cathy Adams frets about the price of gas as she drives the 30 miles from her friend’s home in Mexico Beach to the St. Andrews Community Medical Center, creating a mental list of what other items she can get done on this tank.
Money is tight. Tighter than it’s ever been.
A year ago, Adams worked at a health care company in Sarasota, specializing with dementia patients. She liked making them laugh; it helped her forget about lump in her breast being tested for cancer.
Last June, the company reorganized, cutting Adams’ position. The same day, her tests came back positive: She had cancer.
“I went home and cried and cried,” said Adams, 60. “I laid in bed for a couple days and just cried.”
Then, she planned. Her insurance would last for a little while — long enough to at least start her treatment — and she had five months of unemployment payments. Between the two, she hoped to patch things back together.
Though the job market was finicky, Adams did find a private oncology group willing to start her chemotherapy. When her insurance ran out, a community hospital took over her treatments.
But just when things seemed settled, “my roommates kicked me out,” she said.
Not knowing what else to do, she said goodbye to her doctors and moved in with a friend in Mexico Beach in early January, bringing her clothes, some curtains, her yorkie-poo and a list of medical facilities she thought could help her.
At the end of February, she found the St. Andrews clinic, after being turned away everywhere else. At that point, she had gone three months without treatment and had no income.
“I was scared they would turn me away, too,” she said.
Instead, they found a doctor in Sandestin willing to take on her case, raised funds to pay for more testing and helped her manage. She started her treatments May 3.
It doesn’t solve everything — she can barely afford the gas — but she feels like she is back on track.
Every day, Brenda Iles prays she isn’t dying.
She could be. About a year ago, her doctors discovered her blood pressure was “out of control” and worried that something was wrong with her kidneys. When she had an X-ray, the radiologist saw something unusual and ordered a CAT scan to get a better look.
But Iles couldn’t afford a CAT scan, which can cost hundreds of dollars, so she hasn’t had one yet.
Iles’ problems started three years ago. She decided to stop working when the aches in her knees and back made her work as a role player for the military unbearable. She was an independent contractor, so she didn’t have any benefits. Since then, Social Security has denied her claim, and because she in her 50s, she is still too young for Medicare.
She thought leaving work would be temporary and didn’t imagine she would wind up in her current situation.
“I’ve always worked,” she said. “This put the brakes on all of that.”
The director of the St. Andrews Clinic is working on finding some grant money to pay for the CAT scan. If that falls through, Iles will have to raise the money herself or simply go without.
So, she prays, she saves her pennies and she waits.
“It’s nerve-wracking when something is going on in your body and you don’t know what is,” Iles said. “I think about it whenever I feel a little pain.”
On an average day, she said her pain hovers at about a 4 out of 10, but sometimes it gets worse — much worse. She also has thyroid issues that require daily medication.
Since the pain started, Iles left her home in Louisiana and moved in with her son in Panama City. On her good days, she likes to bake and watch over her grandkids. She uses a cane — a purple floral one, with a worn dark handle — to follow them around.
On her bad days, she just “gets through them.”
Felicia Mincy took a deep breath in through her nose, the kind that could either be a reaction to pain or an attempt to quell surging frustration, and stared at the ceiling as the technician stuck a biopsy needle into the right side of her neck.
In this case, Mincy’s breath was less about pain and more about frustration. The technician was biopsying the wrong side of her throat, the wrong nodule, and wasn’t listening to her.
Mincy and her nurse at the St. Andrews Community Medical Center had worked for months to get that biopsy, appealing to doctors, negotiating with BayCare and making dozens of phone calls.
And ultimately, it seemed like none of it mattered.
“I was awake when they did it,” Mincy said. “I told him before he did it it was the wrong side, but he said he was seeing something and he’s the physician … you don’t have a lot of room to talk when you not paying.”
Mincy left the hospital with a bandage on her neck, both furious and devastated. She was no closer to knowing what the soft tissue mass growing on the left side of her throat was. Her nurse as St. Andrews thinks it might be lymphoma, cancer of the lymph nodes, but there is no way to know without the biopsy.
Now she is back at what feels like square one, appealing to doctors, negotiating with BayCare and making phone calls.
Mincy, 45, can feel the lump every time she swallows, and it hurts to drink even water, she said. While waiting for another biopsy, she makes up worst-case scenarios: the mass bursting in her throat; no longer being able to eat; her voice becoming so gravely she can’t speak anymore. The mass becoming so enlarged her children and grandchildren no longer want to hug her.
“It makes me panic,” she said. “I am always ready to go to the ER.”
Timothy Spinks has been a Type 1 diabetic since he was 12 years old, managing his condition through his parents’ insurance and then St. Andrews Community Medical Center’s free clinic.
But a few years ago, his health took a turn for the worst when his eyesight started decaying and he realized free care wasn’t going to cut it. So, he tried use the Affordable Care Act.
Spinks, a chef at a small, low-cost local restaurant, first tried getting insurance through his employer, but when he looked at his options he realized they wouldn’t cover his normal medications, let alone the bi-monthly shots he gets in his eyes to keep from going blind.
Then he tried the health insurance exchange, navigating the government website on his own. But no matter which way he punched in the numbers or what version of a plan he looked at, he couldn’t find one that met all his needs.
So he called a government navigator and explained his situation.
He told them he needed a plan that would cover the medications necessary to manage his condition, including insulin, test strips, etc. It also needed to cover specialists, such as the eye doctors helping to control his diabetic retinopathy — the condition destroying his eyesight — and the trigger finger in his hand.
It also had to be reasonably priced. Spinks has bills to pay and is a single parent to a 9-year-old daughter.
“They didn’t seem to really understand,” he said.
So he gave up, deciding he was better off paying the penalty. He figured without health insurance, he could keep going to the St. Andrews clinic for his primary care and medicine, and BayCare would continue to administer his eye treatments.
But BayCare dropped him. Spinks said he understands; BayCare specializes in critical patients, not long-term maintenance like he need.
But now, he said he’s stuck. He can’t afford the eye appointment — which cost $700 a pop for a private payer — and he can’t find an insurance plans that works. He thinks he’ll end up choosing a plan, though, even if it’s imperfect.
“I don’t feel I have a choice,” he said.
Edward Summerlin defines himself as a workaholic.
Years ago, he was a truck driver, but his diabetes took a turn for the worse and his employers took him off the road. He was offered Social Security disability, but “I turned it down,” Summerlin said. He figured he still had enough working years ahead that he didn’t need a disability check.
He found a job at a Home Depot in Nashville, where he worked for the next 10 years. It was there he had two heart attacks at work in one week. He ignored the first one and kept working. The second time, he finished his shift and then went to the hospital.
Even with medical insurance, the heart attacks cost him $11,000, enough to “wreck” him financially, he said.
After that, he wanted to be somewhere warmer, so he packed his things and moved to Panama City, where he took a job with a local lumber company. During his trial period there, he started having problems with his heart again, and a diabetic ulcer formed on his foot.
He hadn’t been at his new job long enough to receive medical insurance but decided to go the hospital anyway. He ended up spending several days there, and his employer let him go.
Summerlin’s health issues only got worse that year. He needed triple bypass surgery on his heart, and parts of his feet were amputated. Some of the procedures were covered through charity programs at Gulf Coast Medical Center and Bay Medical Center. Others he recieved a bill for, he said.
That was two years ago, but he still hasn’t returned to work. His doctors won’t sign the necessary paperwork.
“That’s the most frustrating thing, that I can’t work,” he said.
Social Security, on the other hand, thinks he could work, so they won’t grant his disability claim.
So Summerlin lives on his landlord’s generosity and $189 a month in food stamps. In his free time, he volunteers at his church — setting up tables and working with inmates at the local prison — and tends to his garden.
He likes what he does and “doesn’t blame anyone,” but he can’t help a nagging feeling he would have been better off if he accepted disability and stopped working the first time the government offered.
For Jeannette Whitmore, getting older came with the typical batch of aches and pains — trouble sleeping, suspicious lumps, earaches and difficulty breathing from 44 years puffing on cigarettes.
It made her want a doctor, someone she could call when something seemed not quite right. But she was earning a meager income as a housekeeper cleaning condos and didn’t have any insurance, so it seemed out of reach.
The health department, though, told her about the Avicenna Free Clinic, a small health care facility on 15th Street that shares a receptionist with the adjacent Islamic Understanding Institute.
“They became my support network,” Whitmore said. “I quit smoking and stopped biting my nails, my two biggest triumphs.”
They handled her little issues, but they also have helped to handle her big issues. When Whitmore’s smoking started to suffocate her, they nagged her to quit. When a problem arose with her thyroid, they prescribed the right medication.
The latest thing to go is her back, which has become so weak her doctors say she needs a rod inserted and two metal braces to support her neck. One wrong fall, her doctors said, and she could find herself in a wheelchair.
Whitmore said she is looking into insurance plans to cover the procedures for her back, but so far nothing has been affordable. But she’s still hopeful it will be resolved and said even with her back condition, she’s still in better shape than she was when she first showed up at Avicenna three years ago.
“Once this stuff with my back gets resolved, I want to learn how to paddleboard,” she said. “That’s the new fad. I want to do that. It looks like good exercise.”