Three weeks ago, a doctor told Katrina Howard she had two choices: Find medical care out-of-state — or move into a personal care home and prepare to die.
She chose the former.
As Howard withered away from the effects of a life-threatening eating disorder, her mother drove the 200 miles from Americus, Ga., to Tallahassee, hoping to keep death in the rearview mirror. When 25-year-old Howard arrived at Tallahassee Memorial Hospital, her doctor was not sure there was much he could do to save her. He’s still not sure.
“She’s not out of the woods yet,” said Dr. Paul Robinson, a pediatrician at Tallahassee Memorial who has specialized in treating adolescents and eating disorders. Howard’s pancreas has shown worrisome signs of stress. She now weighs about 58 percent of her ideal body weight; anything below 75 percent, Robinson said, leaves her at risk of cardiac arrest.
At four feet and 11 inches, Howard weighs 58 pounds, Robinson said. Her body weight should be a little less than 100.
“She is very sick,” Robinson said. “She has been very sick. We are praying that we can get her pulled out, but she is a very sick person.”
And if it’s true that Howard has been the victim for more than half her life of anorexia nervosa, she also has fallen prey to a public health system that has failed to comprehend the gravity of the condition’s grip — and, as a consequence, to pay for comprehensive treatment. Anorexia is the third most common chronic disease among young people, behind asthma and type-1 diabetes.
Eating disorders also are the most deadly psychiatric diagnoses, said Dr. Ingrid Barrera, director of the eating disorders program at the University of Miami, worse killers than depression or schizophrenia. Left untreated, Barrera said, the illness will claim 20.4 percent of those who suffer from it.
“There’s so many people like me out there that are struggling with this disorder,” Howard said from her hospital bed. “They could possibly die any day and they can’t get the help they need.”
Howard grew up in an impoverished family in a mostly rural area outside Americus, which sits between Fort Benning to the northwest and Albany to the south. Howard is insured by Georgia Medicaid, an insurance program for the needy funded jointly by the state and federal government.
It views the kind of specialized treatment program that Howard requires — a clinic that can ensure she is medically safe while undergoing intensive, and expensive, psychiatric treatment — as a luxury that taxpayers should not be forced to endure, Robinson said.
Such clinics can cost tens of thousands of dollars, Robinson said. Medicaid typically is willing to pay a fraction of that. In such cases, the insurer and the treatment center can carve out a “single case agreement” in which the clinic essentially agrees to accept what the state is willing to pay. Georgia Medicaid will not sign such agreements, Robinson said.
Fiona Roberts, a spokeswoman for Georgia's Department of Community Health, initially said the department could not comment on individual cases. Later, after this article was published online, she sent a statement:
"Per your inquiry below, Georgia Medicaid will enter into Single Case Agreements with non-enrolled providers. However, requests for Single Case Agreements are reviewed on a case-by-case basis. In those instances wherein Georgia Medicaid enters into a Single Case Agreement, the Department will work with the provider to determine the scope of services to be rendered and the reimbursement amount. Georgia Medicaid does cover and reimburse for treatment for eating disorders such an anorexia."
Howard can’t understand why she has to fight two battles: to stay alive and to get the treatment she needs to overcome the disease.
“It’s insurance,” she said. “Isn’t it supposed to help you with medical care?”
Anorexia nervosa is a cruel and deadly disorder, even for the wealthy. All around, it has a mortality rate of 6 percent, Robinson said. “The majority of deaths are either from starvation or suicide,” the doctor added. “They get so tired or beaten down by those horrible thoughts: ‘I’m bad. I’m ugly. I’m stupid. I’m not good.’ They get tired, they give up the ghost and they kill themselves. It’s a horrendous disease.”
And anorexia discriminates: For those in poverty, he said, the mortality rate jumps to one in every five.
Eating disorders are so intractable — and their victims often so uncooperative, Barrera said, that many doctors simply "refuse to work with the population." The disease can be beaten, but seldom in the three-week or four-week hospitalizations that some insurance companies are willing to cover. In severe cases, such as Howard's, medical stabilization alone can require more time than that.
Patients who are gravely ill can be reintroduced to food only slowly and extremely carefully, under a doctor's care, Robinson said. Soldiers who liberated European concentration camps in the last century learned this lesson in a terrible way, he added, when survivors were encouraged to eat large meals — and then almost immediately died.
"It takes a good year of very intensive treatment for patients to get better," Robinson said.
Stars who succumbed
Howard's struggle is so grave, Robinson said, partly because she was not able to get care at the disease's onset. "If she had been seen at age 14, if she had adequate insurance and received proper care then, she would have had a chance at recovery. Every year the risk is worse. The disease becomes more chronic, and the less treatable it is."
Well-known people who died from the disease mostly died young: Pop singer Karen Carpenter was 32 when she died of heart failure in 1983. Gymnast Christy Henrich was 22 when she succumbed in 1994. Two fashion models died in 2007 — Eliana Ramos at 18, and Hila Elmalich at 33. The singer Javiera Munoz died of anorexia in January at age 40. Numerous celebrities have come forward in recent years to acknowledge that they struggle with the condition, including Demi Lovato, Paula Abdul, Russell Brand, Alanis Morissette and Lady Gaga.
People often think the disease strikes only rich people, Barrera said. But that's only because "when you go to treatment centers, that's who can afford to be there."
“If you just accept the people who have the money to pay, what happens to those who don’t?” Robinson asks. “Do they just die?”
When Howard first started to cut down her diet, she promised herself she wouldn’t “turn into skin and bones.”
She’d grown up constantly moving, after her parents divorced when she was too young to remember. With the exception of a few stints with extended relatives, her mother raised her and her older brother alone in southern Georgia, chasing whatever job — sewing, factory work — would allow them to scrape by.
School was a welcome respite, though every year or so the cycle would repeat: packing up all the furniture, moving somewhere new, trying to put down new roots. She loved history, science and the library, whenever she had time to read.
She also found comfort in food. She’d put away a whole loaf of bread, a cereal box, a quart of her favorite ice cream with chocolate and vanilla swirls in a single day.
“I was probably a bit of a binge eater,” she recalled. When neighborhood kids took notice — “you know how children are” — she began to consider losing weight. “I thought maybe I’ll just drop a few pounds, try to eat a little healthier.”
But by the time Howard hit her teens, her disordered eating habits were full-blown. She researched online for hours about how to cut calories out of her meals, and she tried every diet plan she could find.
When her mother, herself a chronic dieter, would go on walks, Howard would run laps instead — “overdo it a little.”
“But I’m not going to be one of those girls that gets all uppity and goes diet-crazy,” she remembered insisting to herself at the time. She pulls now at her papery skin, covered in small sores and stretched by the joints that overwhelm her figure. Her legs are so frail they’re invisible under the hospital sheets. “Just a few pounds.”
As she dropped weight, she didn’t know her calorie-cutting and unhealthy weight loss had a name until she was 15. Her mother spotted her reflection in the mirror as she was getting undressed and gasped.
“She was concerned about me,” Howard remembered. “I took a look in the mirror and realized: ‘I really do look sick.’ ”
But in Americus, population 15,854, none of the local doctors knew what to do. Her family checked her into the local Phoebe Sumter Medical Center multiple times, sometimes for weeks, but “they’d never really understand,” Howard said. “They don’t have the medical staffing, the medical training to deal with anorexia itself.”
For years, Howard bounced around from hospital to hospital — Phoebe Sumter, Phoebe Putney in Albany, Emory University’s hospital in Atlanta — whenever her weight dived or she became especially ill. But every hospital stay, lasting a few months at most, would only stabilize her weight.
“It’s just a really hard struggle,” she said. “I couldn’t do it on my own.”
The only thing that did help, temporarily, were out-of-state clinics for eating disorders that she was referred to — one in North Carolina for a study run by UNC-Chapel Hill and one in Orem, Utah, where she stayed for half a year. They were places to escape from the “torture” of the disease, she said, surrounded by other patients and providers who understood.
“‘The thoughts are always there, they will always be there. But there’s a way to overcome them,’” she remembered learning. But without fail, after a few months, money would run out and she’d be discharged.
When she came home to Georgia, the cycle would start yet again. She began to fear that she’d die in her sleep, after having heard stories about other anorexic patients whose hearts gave out in the middle of the night.
“My mother would lie awake at night just watching my chest, making sure I’m still breathing,” she remembered. “I would start feeling something and it could be anything, from struggling to be able to swallow to feeling your heart beating too fast or too slow.”
At the end of last month, she checked into her local hospital in Americus again, feeling ill. But after several days, a doctor told her there was little more they could do. Howard and her mother were told she had two options, she recalled: Seek care elsewhere or go home.
Howard and her mother refused to give up.
“If I would have went home that day, I don’t think I would have made it through the night,” Howard said. After she was discharged, she and her mother packed a bag with a change of clothes and drove immediately to Tallahassee.
“We just took the chance. We knew it was the only way to save me.”
Legs like wrists
Since she was admitted on May 4, Howard has lived alone on the fifth floor at Tallahassee Memorial Hospital, surrounded by doctors who have struggled to keep her alive.
Her mother can’t afford the gas to see her again for weeks, so a steady parade of nurses has kept her company: taking her vitals, feeding her meals and occasionally helping her out of bed so she can hobble to the bathroom, her legs as thin as a normal person’s wrists.
They keep her on a rotating carousel of medications just to “keep me running,” she says calmly. Her medical files are an encyclopedia of disorders and side effects: pancreatitis, acute and subacute necrosis of the liver, osteoporosis. Hypotension. Heart problems. They are a diary of her organs slowly shutting down.
She keeps her own notebook with journal entries and nutrition notes, conserving paper by unfailingly writing to the edges of every page. The sheets have curled under the pressure of her handwriting, so compressed the pages are more black than white.
Howard dreams one day of getting a college degree and becoming a registered dietitian, to work at the Utah eating disorders center where she was cared for a few years ago. She wants to travel the world one day too: Italy, Paris, Hawaii, Japan.
But in the small world of her hospital room, old habits die hard. She negotiates for nearly an hour with her dietitian about what she wants to eat to hit her increasing calorie goal. A hard boiled egg, salt but no pepper. A deli sandwich, but just the bread and turkey.
Strawberries? Yes. But she still has 400 more calories to go for dinner.
On the wall across from her is a large whiteboard with a series of goals and health metrics, from her calorie intake (at least 1,300 calories today) to her heart rate (over 60). Under “one thing I want to happen today,” someone has written “Feel Better.”
But under “possible date of discharge” are three words, circled: “not sure yet.”
A clinic they’ve identified at Columbia University in New York has promised to take her as “a last resort” — and without reimbursement — if she can gain enough weight to qualify for treatment. Robinson says that means she’ll have to weigh at least 65 pounds, a tall order. “She’s got a long road,” Robinson said.
And Howard doesn’t know how she’ll pay for a flight to get there. At issue too is what will happen if she’s forced to leave Tallahassee Memorial before she’s well enough to even consider going to New York.
“It’s all I can really think about and focus on — how long are they going to keep me before they throw me out?” she asked, crying. “Will they be able to help me enough to the point where it’ll be okay if they do?”