In Florida, a Lifeline to Patients With TB
By DAMIEN CAVE
LANTANA, Fla. — The last of the nation’s original tuberculosis sanitariums sits, improbably, just off Interstate 95, near a Dunkin’ Donuts and a Motel 6, and just behind fields of children playing soccer. The fading signs out front simply say A.G. Holley State Hospital. There is nothing to suggest that one of history’s greatest killers lurks inside.
Florida lawmakers have tried for years to shut the place down. History, it seems, should be on their side. Holley’s counterparts, like the Trudeau Sanatorium in upstate New York, closed decades ago, after antibiotics nearly scrubbed the disease from the United States. These days, TB treatment usually takes place at home or in a handful of large research centers.
And yet somehow Holley remains. Sixty years after it opened, it is both a paragon of globalized public health and a health care anachronism, where strangers live together for months with boredom, pills, pain, contemplation and the same ancient disease that killed George Orwell, Franz Kafka and Eleanor Roosevelt. There used to be 500 patients here, surrounded by brush, with nursing quarters segregated by race. Now, no more than 50 live in the main building, above echoing, empty floors sometimes rented out as a location for filming horror movies.
They have all moved in, like generations past, because they are unable to control their illnesses. Some have traditional TB, the airborne contagion carried by one-third of the world’s population, which becomes a lung-wasting menace in only about 10 percent of the infected. A growing number of others arrive with drug-resistant mutations that can cost hundreds of thousands of dollars to treat.
Just keeping Holley air-conditioned costs hundreds of thousands of dollars a year, according to administrators, which partly explains the state’s interest in moving and privatizing the program.
Employees and patients, however, argue that the specialized care at Holley is a bargain for public health. Holley is a leader in research on drug resistance, and 93 percent of those who enter end up completely cured.
Patients also leave with more than just stronger lungs. Maintaining old sanitarium ideals, Holley offers care beyond TB, whether dentures and eyeglasses or cultural activities, including outdoor classical music concerts for the noncontagious. Many Holley residents who hated arriving end up leaving profoundly changed.
“It’s not uncommon, as patients get better, for them to see this as a second chance at life,” says Dr. David Ashkin, Holley’s medical director, a Brooklynite with a hard-rock ’80s mullet. “It’s very spiritual and life changing to go from nearly dead to alive.”
Most days in fact are a mix of profound appreciation for life, and gnawing sadness at the limits of institutionalized existence.
6 A.M.: Sunrise Sadness
Jean Barreau has lived on Holley’s fourth floor for 23 months, and there is nothing he misses more than work — construction, odd jobs, anything to provide for his family in Haiti. In its absence, he gets up early and walks the halls. He passes a television in the room everyone still calls a solarium. He picks up coffee by the wooden phone booth. He walks some more.
“It’s my therapy,” he says. “I have to get up and do something.”
Compact and contemplative, Mr. Barreau usually ends with reading the Bible. It is practically a miracle that he can stand.
When he first arrived from southwest Florida in June 2008, tuberculosis had chewed not only through his lungs, but also his spine. He spent months in a back brace that squeezed him as tightly as a Victorian corset. On this morning, it sits in his corner room — a benefit of his having been here the longest — where the walls hold photos of Barack and Michelle Obama cut from magazines.
He says the clips are just decoration, to fight the boredom and the sadness. Eight months after he arrived, his wife died in Haiti. He is not sure of the cause, though it could have been TB.
Even as the rates of infection in the United States continue to decline — there were 12,904 reported cases in 2008, down 3 percent from the year earlier, according to the Centers for Disease Control and Prevention — tuberculosis is on the march worldwide. Every year, about two million people die of it, mostly in underdeveloped countries where AIDS is prevalent. (The chances of becoming sick with TB are greater in those with suppressed immune systems.)
Not that his wife’s diagnosis matters much. Asked how he coped with her death, Mr. Barreau, 50, turned silent as his nurses said he had stopped eating and stopped talking. His TB kept him from the funeral, too. He still has not had a chance to comfort his youngest three children, who are 16, 11 and 10.
“There are two types of crying,” Mr. Barreau says. “One is for the life lost; the other is for missing her burial.”
10 A.M.: Treatment
The pills are huge, and mostly red and white. “I want you to look at your medications and make sure they’re correct,” says Wayne Medema, a tall, bearded nurse who has worked at Holley for 15 years. He is at the room of William Hobrock, a sweet-tempered former janitor from outside Tampa who seems to have caught TB at the hospital where he worked.
Mr. Hobrock grabs two pills at a time. He swallows 10 in all.
Others deal with many more. Of the 31 patients at Holley in mid-May, seven were multidrug resistant, meaning that the usual cocktail of antibiotics and vitamins no longer worked, either because the patients did not properly take their first course of medication or because they caught a strain with that resistant mutation.
Of those seven, one had extremely drug resistant TB, which requires treatment with even harsher side effects and higher costs. While the average TB case around the world can be cured in six months with less than $40 worth of pills, the drugs used to battle extreme resistance cost about $150,000 for a full cycle — a hefty bill for Holley, which is financed mostly through state and federal programs like Medicaid.
Worldwide and in the halls here, these stubborn infections are on the rise. A recent World Health Organization report found that drug resistance has reached an all-time high, affecting 3.6 percent of reported TB cases.
“It’s a big concern for the future,” Mr. Medema says. “Can we really get a handle on it?”
Noon: Side Effect
Lunch comes early at Holley, and patients fill their plates with cafeteria cuisine in a room with a rounded wall of windows and a half-dozen tables.
Eating matters. In the era of the Romantic poets — “a fading rose fast withereth too,” John Keats wrote before dying of TB at 25 — tuberculosis was called consumption because it appeared to slowly devour its victims. Indeed, the patients who reach Holley after struggling against TB on their own are often most amazed by one side effect: their guts.
Willie Bennett, who stands about 6-foot-3, came in at 150 lbs; he is about to leave at 205. Barbara Unkelbach, another patient, weighed 129 pounds before being transferred here; now, a few months later, the scale says 164.
The added girth is a sign of health and renewed energy. Generations ago, sanitariums offered classes in metalwork. Holley now teaches patients about computers. There are also arts and crafts classes that yield flashes of beauty — like the bird feeders hanging from a tree in the recreation yard, painted blue and green, miraculously transformed to look nothing like two-liter bottles.
Jeffrey Brown, 46, of Savannah, Ga., considers the yard his own. He worked in landscaping before coming to Holley, and every afternoon he rakes or plants. As a result, flowers now wave where weeds once grew. Mulch lines the walkways, its pungent scent blowing in the breeze with … cigarette smoke.
Bad habits, it seems, are especially hard to kick.
3 P.M.: When to Go
Fortunately, Ms. Unkelbach stopped drinking. She had a blood-alcohol level of 0.44 percent when she arrived at a nearby hospital with TB, and since coming to Holley, she has addressed both her alcoholism and her physical health.
Her doctors are amazed. Sitting in a chilled conference room to discuss when she might be going home, Dr. Ashkin and his deputy, Dr. Elena Hollender, begin with compliments.
“You look like a million bucks,” Dr. Hollender says. “Do you remember what you looked like when you came in here?”
Ms. Unkelbach, 44, blond, raspy and self-deprecating, nods and smiles. “Wow, it was a long time ago,” she says.
She really wants to leave. June 10 is the date she has been repeating for a week, the day she would like to start over again in her hometown, Hollywood, Fla. She plans to find a job and an apartment that Mr. Hobrock can move into as well (though she says the relationship is not romantic).
In her view, there are just a few more steps. In a few days, she will receive dentures, filling what is now a mostly toothless mouth. Holley’s doctors will also provide her with a cosmetic contact for the left eye that was blinded eight years ago when, she says, a friend accidentally hit her in the temple.
Dr. Ashkin says the improvements will help her find work. “We try to get them to a point where they can go out and be productive citizens again,” he says.
He clicks through several scanned images of Ms. Unkelbach’s lungs. He points to the decrease in TB bacteria, but also identifies a problem.
The bad news hits like thunder.
“You need to be treated until Sept. 11,” Dr. Ashkin says.
“Aw, hell no,” comes the reply. Ms. Unkelbach stiffens and pushes back from the table. “I’ll take the meds on the outside.”
“Just listen,” Dr. Ashkin says.
The next half hour is tense, as doctors lay out the risks. Missed medication or more drinking could make Ms. Unkelbach drug resistant and contagious. Leaving now may mean coming back — under a court order. Eventually, Ms. Unkelbach leaves, apologizing for her overreaction. A week later, she decides to stay.
8 P.M.: Cycling In and Out
Outside, a few hundred yards from boys kicking soccer balls on the other side of the fence, the patients gather. A group of Haitian men snap dominoes down against a plastic table. Ms. Unkelbach sits under a banyan tree reading a novel titled “Run for Your Life,” while Willie Bennett is enjoying his last night of cards. His second stay at Holley is coming to an end.
The next morning, he will leave and take a Greyhound bus home to the other side of the state. He arrived with one small suitcase and a fiancée nine months ago; three bags are now packed beside his bed upstairs, and he is single.
The anticipation has him jittery. “I’m probably going to be up all night,” he says, as he arranges his cards by suit. “It’s time to go home.”
Dr. Ashkin has more patients on the way. Every week one or two come in. Some are sicker than others — a 62-year-old man in central Florida died before he made it — but the routine stays the same. State lawmakers are still looking for ways to change the hospital, or at least cut costs.
But as a Holley resident once told a reporter, at A.G. Holley, “the principal thing is to get well and get out of here.”
That was in 1959.