The Last Sanatorium
Juan Jose Reyes sits quietly in a conference room on the first floor of A.G. Holley State Hospital in Lantana with his hands folded in his lap and his eyes cast down. His gaunt face, partially hidden by a baseball cap, is expressionless. When he does speak, his voice is barely audible.
This is his monthly medical conference, a time set aside to discuss his treatment with doctors. Today the news is not good. Reyes' tuberculosis has mutated into a strain doctors here have not seen before. And they are not yet sure how to treat it. That means his six-month, court-ordered stay at Holley is probably going to be extended for a long time.
So he has a choice. Reyes can either volunteer to stay on at Holley until doctors give him a clean bill of health, or he can go back before a judge, who will decide if he presents enough of a threat to public health to keep him at the hospital against his will.
Reyes is from Mexico and doesn't speak English. He gets the bad news via Dr. Elena Hollander, a Holley physician fluent in several languages. She puts a hand on his forearm and leans in close to tell him. Her words make him flinch, and he responds softly in Spanish. Hollander translates: "He says he wants to go back to the judge. He says he doesn't want to stay here voluntarily."
That puts him in the majority at A.G. Holley, where 75 percent of the patients are held against their will because they pose a significant risk to public health. Once a sprawling, state-of-the-art TB sanatorium out in the wilds of Lantana in Palm Beach County, A.G. Holley is now a court of last resort for patients and the public. At the height of the sanatorium movement, something like 600 such places dotted the country, providing bed rest, fresh air, and the only hope of a cure from one of mankind's most pernicious diseases. It wasn't particularly effective, but there wasn't any other medical option.
Holley is the only one of the 600 left. Modern hospitals have wings or clinics devoted to treating TB, but only Holley exists to do nothing else. It is the last sanatorium. And for now it's in no danger of being closed.
Far from being a disease of the past, TB still poses a very real threat to public health in this country, and it is one of the few illnesses that can land you in court-ordered treatment. Contagious people put TB in the air by coughing, sneezing, singing, or talking. Anyone cooped up in an enclosed space -- a prison, a nursing home, a homeless shelter -- with someone contagious is at risk.
South Florida is a TB hot spot, thanks to the high rate of immigration from places like Haiti and Mexico, where infection rates are many times higher than in the U.S. Most cases of TB can be easily and cheaply treated at home, provided the patient is cooperative and hasn't developed a resistance to the most commonly used TB drugs.
Tougher cases end up at Holley.
Reyes is HIV positive and has been homeless. He has worked as a sandblaster and cement cutter, medically noteworthy because breathing silica dust tends to exacerbate TB infections. He doesn't know how he caught the disease, though he was likely exposed to it when he served time in a Miami-Dade County jail in 1998. While there, doctors biopsied a lump on his neck, which turned out to be a tubercular infection of his lymph nodes. (Though TB is commonly thought of as a disease of the lungs, it can actually infect any organ in the body. It is not uncommon to see TB in the neck, a condition known as scrofula; in the spine; or in the brain.)
Reyes got out of jail and was put on a supervised course of drugs but didn't follow up with his health care worker -- a big no-no. Health care workers tracked him down and started him on a second round of drugs but lost track of him again in June 1999. In October Reyes got sick -- TB patients say the disease feels as if your "lungs are hollow," report extreme pain when breathing hard, and also suffer from fevers, chills, and night sweats. He was likely contagious and may have developed a drug-resistant strain that could be passed on to others. When he checked himself into a hospital, a judge ordered him to spend six months at Holley.
For all infections that require antibiotics, it's important to finish the course of medicine. Not doing so invites the bacteria to become immune to the antibiotic prescribed to kill it. That's what happened to Reyes, says Holley medical director Dr. David Ashkin.
Ashkin is 39 years old, energetic, and given to wearing loud ties. He speaks at a brisk clip with a Brooklyn accent and sports a lush head of curly, shoulder-length black hair. A pulmonologist by training, he's clearly fascinated by every aspect of TB. And Reyes' case has his full attention.
"We are proving that Darwin was right," he says. "Remember Darwin says that when you change the environment, the fittest organisms will survive. What we have done is by changing the environment, by giving him [tuberculosis drugs] INH, rifampin, and others, the strongest and most fit TB bacteria survive and are selected out." In other words, Reyes' TB was becoming immune to the drugs used to treat it and thriving.
Holley patients are classified by whether or not they can be treated with INH (a trademark for the drug isoniazid) and/or rifampin, the most common, cheapest TB drugs. If they can be treated, they are said to be "sensitive"; if not they are labeled as "resistant." The distinction is not trivial. Patients who are sensitive can be treated easily by taking pills, and their stay at Holley for six months costs about $60,000. Those who are resistant face up to two years of much stronger, more toxic drugs taken intravenously. Treating these cases at Holley costs about $250,000. Resistant patients also pose the threat of spreading the more virulent strain.
While some of the cost is reimbursed by Medicare, for the most part the state picks up the tab for treating patients at Holley.
In Reyes' case, test results indicate the TB in his body is in the process of mutating; it has properties of both resistant and nonresistant strains. "This is very important, actually," says Ashkin. "I don't think we have ever seen, I have to admit, a case where we had different resistance patterns. We are trying to get to the bottom of a mystery here. This is really strange."
Hollander gets on the phone with the state TB lab in Jacksonville to confirm Reyes' results. She wants to make sure his sputum sample hasn't been mixed up with someone else's or contaminated. It looks like it hasn't.
"This is so bizarre," says Ashkin.
Reyes' court-ordered six months are up in April. But Ashkin believes it's too risky to let him leave. "I am concerned that, if we let him back out again, he may again be lost to follow-up and would develop more resistance," he says. "In this situation what we will do is go back to court, he will be assigned an attorney, a public defender. We will present the facts as to what we are concerned with, his attorney will present his facts, then a judge will decide through due process what will happen. These are the decisions that are tough, and we are very lucky the statute is very supportive, that there is a mechanism in place that protects both the public's health as well as the individual's rights."
Reyes is upset. He speaks quietly into his lap. Hollander translates. "His last question was, 'How long do I have to be here?' I said, 'Honestly we don't know.'"
TB has been around as long as recorded history -- excavated Egyptian mummies show signs of it. Hippocrates called it phthisis and believed it was caused by growths in the lungs he called tubercula. Plato considered it untreatable and advised physicians not even to try, lest they sully their reputations when patients died. It is cited in the Bible (Deut. 28:22), where it's called "consumption," a reference to how quickly TB patients lose weight: "The Lord will smite you with consumption, and with fever, inflammation, and fiery heat, and with drought, and with blasting, and with mildew; and they shall pursue you until you perish."
Louis XIII of France died of TB, as did John Keats, Frédéric Chopin, Charlotte Bront&emul;, George Orwell, Henry David Thoreau, and Eleanor Roosevelt.
In A.D. 131, Greek physician Clarissumus Galenus devised a treatment for TB that proved to be as good as any that would come along for almost 2000 years: fresh milk, open air, sea voyages, and dry, elevated places. With a few modifications, this was the same thinking behind hundreds of sanatoriums that opened in Europe and the U.S. beginning in the 1800s.
Upstate New York became the epicenter of American TB treatment in the early 1900s because the cold winter air was believed to be beneficial. The entire town of Saranac Lake grew up around the economy of serving those seeking a cure.
Conversely Florida's warm, moist climate was also thought by some to have healing properties. In 1876 poet Sidney Lanier wrote a book for consumptives on how to make a living in Florida after moving here to recuperate. He recommended shooting herons for their feathers and alligators for their teeth, both of which were in demand by northerners.
What is now known as A.G. Holley State Hospital opened in 1950 as the Southeast Tuberculosis Hospital, the second of four built in Florida. It was, and is, a pink, four-story hospital that sits on 166 acres of Florida scrub thick with fig trees. It was renamed in 1969 in honor of Marianna, Florida, businessman A.G. Holley, a philanthropist who served for 16 years on the state tuberculosis board.
Old photos taken for the hospital newsletter depict a predominantly white patient population enjoying barbecues, getting shaves at the barbershop, undergoing chest x-rays, and sitting around tables making paper flowers in a convivial, country club-like atmosphere betrayed only by the occasional hospital staffer shown wearing a surgical mask.
Today 93 percent of Holley patients are black or Hispanic. One-quarter have been homeless in the last 12 months, and a third have a diagnosed psychological disease. TB has become a disease prevalent in lower socioeconomic classes, where health care is less accessible. It is a major concern in prisons and homeless shelters.
Lantana, the nearest city, was too small to provide basic services to the complex in 1950, so Holley pumped its own water, operated a sewer system, incinerated its own garbage, and generated its own power. Doctors, nurses, and staff lived on the grounds in the scattering of houses and apartments that still stand.
Florida's timing was not great when it built Holley -- antibiotics came along just as it opened. By 1971 its patient load was down to less than half of capacity, and by 1976 beds and staff were reduced to serve a maximum of 150. By that time it was already the last TB hospital in Florida, and the state Department of Health and Rehabilitative Services wanted to close it. The Legislature dragged its feet but finally recommended that the hospital and grounds stay open and vacant space be used by other government agencies.
HRS tried to shutter Holley again in 1984 and 1992, but by that time a change was afoot in the fight against TB -- the number of cases in the U.S., falling for decades, was on the increase. Medical researchers pointed to AIDS, homelessness, drug abuse, less federal funding for public health programs, and increasing immigration from countries with a high rate of TB infection as reasons why TB cases in the U.S. went from 22,200 in 1985 to 26,600 in 1992. Florida saw a 20 percent increase in the number of cases in the same period, though rates have since declined.
About 1400 new cases were reported in Florida in 1997; Holley saw about 100 of those and had a 95 percent cure rate. The other 5 percent died, says Ashkin, but not always of TB. "One the first things we realized is that, of all the problems people come in here with, TB is the least of them."
Thomas Johnson was 20 feet from freedom when he collapsed under a street light, clutching his chest. He could see the cars whizzing by on Lantana Road, and he spotted the gap in the chainlink fence that would get him there, but he was too sick to take the last few steps.
"I saw the big hole in the fence, and I could not go through it," recalls Johnson, age 50, seven months later. "I didn't want to go through it because I felt like my chest was going to burst open. I was full of TB."
Johnson doesn't know how he got infected. He had been on DOT -- directly observed therapy -- in Jacksonville and seemed to be responding to treatment. But then he took a trip to North Carolina, broke contact with his caseworker, and ran out of medication. When he got sick, he went to a Jacksonville hospital. Because he hadn't complied with his TB treatment as an outpatient, a judge ordered him to Holley.
He arrived Friday, August 13, 1999, sick and defiant. That weekend three patients at Holley died, he recalls, confirming his suspicions about the place. "I heard before I got here that this was someplace where, if you got TB, you came and you died," he says.
He wasn't going to wait around to die.
New patients are quarantined in isolation rooms -- patients call them "condos" -- upon arrival because they are contagious until treatment takes hold. TB bacteria, however, is killed by the ultraviolet rays of the sun. Even newcomers can go outside during recreation time if they feel up to it.
On Sunday, two days after arriving, Johnson went outside to the fenced recreation area while a Holley supervisor played basketball with other patients on a nearby court. At dusk, while the supervisor led the others back inside, Johnson shimmied up a ficus tree that straddled a nine-foot chainlink fence, hopped to the branches of another ficus on the other side of the fence, and climbed down. He sneaked behind the West Palm Beach Branch Laboratory, which is on the A.G. Holley grounds, and past a line of '50s-era bungalows called Doctor's Row. But when he got to the property line and that gap in the fence, he was spent.
"I just asked God to take me," he says, raising his arms and face to the heavens, "just go on and take me away from this."
Then came the epiphany. "It looked like I was going to pass out, then I was saying 'God, please don't let me die.' And then I went to asking God to bring me strength to bring my ass back home across the fence and come over here to the hospital. That is what I did."
The staff never knew about Johnson's escape attempt until he told them five months later. By then the pain was gone, his strength had improved, and he'd become a model patient eager to cooperate with doctors and willing to share words of encouragement to new patients, many of whom are thinking the same thing he was in those first few days.
"I say to them, 'In your mind you think you are all right, you think you can escape. But you will be hurting so bad from the exertion you won't go anywhere.'"
Nonetheless a handful of others have tried. One man made it through the gap in the fence only to call from a nearby gas station to have someone come get him. Another climbed to the roof of the hospital, watched security personnel scour the grounds for him, then gave up.
It's hard to imagine Johnson as anything but upbeat and thankful. Everybody knows him; doctors and hospital staffers see him and wave. He smiles broadly and often, tells jokes in a voice that rises to a shout at the punch line, and is friendly in the rangy, loose-jointed way of people who've had a lot of time to think about who they were and who they've become. "When I got here, I was in a severe state of denial," he says, sitting outside under the shade of the same tree he scaled in August. "Now I have nothing but accolades to give this hospital. This is the best thing that could have happened to me."
Life at Holley is governed by the clock and the calendar. Each day is parceled up into blocks of time for eating, taking meds, and recreation. The schedule varies little from day to day. Patients mark the passing of hours by the routine and the passing of days by crossing them out on ubiquitous wall calendars. Routine is the road to recovery, but it's also a constant reminder that Holley is half hospital, half jail.
Cooperation is rewarded with incremental freedom. Each patient wears a colored wristband. New arrivals, in isolation, wear red bands. When they're no longer contagious, they get a yellow band, allowing them to move about the grounds with supervision. Good behavior leads to a green band and unsupervised ground privileges, then a white band and supervised excursions off hospital grounds. Patients sometimes choose to stay on, after their six months are up, to finish treatment. They're considered voluntary and wear blue bands, meaning they're eligible for unsupervised time off hospital grounds.
Johnson wakes up at 6 a.m. No one is allowed to leave the fourth floor until breakfast at 7:30 a.m., so he showers, dresses, and has a cup of coffee. Between 7 and 7:30 a.m., nurses pass out vitamins for some and meds for others. The average patient at Holley is on 13 different medications. Some take as many as 30 pills a day.
Breakfast is served in the first-floor cafeteria, painted the same dusty pink as the outside of the building. Patients are welcome to go back for seconds. If they do or if they don't, a nurse records exactly what and how much they eat. Weight loss is a symptom of TB, so lack of appetite is a concern.
After breakfast patients shuffle -- no one is in any hurry -- to the outside rec area. Johnson calls it a smoke break, and indeed the majority of the patients here light up as soon as they're outdoors. The irony of trading one lung ailment for another seems lost on most, but Johnson took notice the first time he saw his chest xray. It was splotched with white, he recalls, the signature of a TB infection. The splotches are not TB, but the body's immune system, surrounding the infection with pockets of calcium in an attempt to contain it. For Johnson it was evidence that his lungs were not healthy, and his 30-year smoking habit was not helping things. "I took one look at my lungs, and that ended my smoking career," he says.
Patients live on the fourth floor of the main hospital, which was renovated less than a year ago and looks as shiny, efficient, and cold as any modern facility. Access is by locked elevator, the door of which opens on a glass-enclosed nursing station. On either side is a long hallway with shiny linoleum on the floor and fluorescent lights above. Men stay in the west wing, women in the east, in an arrangement designed to discourage amorous interludes. "A lot of women and men were cohabitating," says Cassandra Gilbert, a 40-year-old patient from Riviera Beach who is going home this month. "If you get caught in a room trying to have sex, you get seven days on the floor and lose one band level."
Most rooms are double occupancy. Gilbert gives a tour of hers, whispering in order not to disturb her sleeping roommate. Her half of the suite is sparsely decorated. A clean white towel covers the bedside table that holds pictures of her son, Arthur, and her newborn twin grandchildren, Alex and Alexis. On the wall is a calendar with April 27 circled. "That's the day I'm going home." She flips the page. "May 2nd. That's the day I take my last dose."
Gilbert thinks she caught TB from her brother. She remembers the night she knew she needed medical help. "I saw death. I was in my room one night, and when I woke up, it was like I was in another world. I saw a dark cloud. I was calling for someone but they couldn't hear me. I thought I was going to die, and I just didn't care no more. I had low selfesteem."
Johnson's room is more cluttered. He keeps his prize possession -- a fishing rod -- in the space between his bed and the nightstand. Now that he's sporting a blue band, Johnson heads out on weekends to fish. On his way off hospital grounds, he passes the spot where he collapsed and found salvation seven months earlier, squeezes through the gap in the fence that stopped him cold, and hoofs it east down Lantana Road to the water.
On the wall next to his bed is a pencil drawing of two gorillas embracing, a gift from a patient who has since left the hospital. The bedside table holds snapshots of family members and one of Johnson and Gilbert sitting side by side at the Holley Millennium Ball December 31. They met at the hospital. He plans to move to Palm Beach County when his treatment is finished this month.
At recreation time patients file out to a fenced yard on the south side of the hospital. There are plans for a basketball court, maybe a volleyball net, but right now the yard is mostly dirt, a few picnic benches and a scattering of plastic lawn chairs, some fledgling plants watered by a sprinkler, and a small greenhouse.
Johnson takes a seat on a picnic bench next to Pancheco Brown, a unit treatment rehab specialist (UTR) supervising the patients. As Brown explains it, his job is primarily to keep watch on a group of people who aren't particularly happy about being where they are. "We watch for contraband, knives, guns, drugs. There are patients here that vary greatly in personality, and you have to keep that in mind."
Lunch is at 11:30 a.m. Johnson, Gilbert, and a third patient, Bill Lansford, share a table. They think the fare is just fine. A man sitting at the next table does not. "It's nasty," he says. And another thing. A.G. Holley is boring as hell, he adds. "Back to the room, outside, back to the room, outside. It's the same thing every day."
"The ones who complain most are the fattest," says Johnson. "They complain with their mouths full."
One-thirty to 4 p.m. is more recreation. Johnson wanders out to the porch, a screened concrete walkway near the front entrance of the building on the north side. Waymon Simon and Deborah Rudolph are there enjoying a cigarette in the shade, holding hands and laughing. They met and got engaged at A.G. Holley. They plan to get married when they both get out this summer.
Simon, from Jacksonville, thinks he either caught TB when he was in prison in 1989 for selling cocaine in a school zone or possibly from his dad, who still has the disease but is no longer contagious. Rudolph believes she caught it while nursing a dying friend, who in retrospect, coughed a lot. "I didn't know it was catching," she says.
She went to jail in Clearwater on drug charges and while there had a chest x-ray that revealed TB. Two months after she got out, she says, she started drinking and smoking crack and didn't follow up with her treatment. She was court-ordered to Holley.
"What it was, I just needed someone in my life," says Rudolph, pinching Simon's ear, "and I found that someone right here."
Next up in the medical conference room is Leonal Dorsainvil, a 31-year-old Haitian man court-ordered to Holley in December.
Dorsainvil came to this country in 1993. He learned he had tuberculosis in March 1999, when he went to the Broward General Medical Center emergency room with swelling in his neck and left arm. Doctors biopsied the lumps and diagnosed TB. Though he doesn't know how he caught it, he recalls a neighbor in Homestead years ago who coughed a lot.
Doctors also diagnosed him with HIV and believed he had toxoplasmosis, a parasitic infection of the brain, common in cats, often found in HIV patients because of their lowered immunity.
Dorsainvil was discharged to supervised therapy for TB, but like so many other Holley patients, he broke contact with his caseworker. In November he passed out and was taken to Jackson Memorial Hospital in Miami. A scan of his brain revealed that the infection had grown. Doctors treated him for toxoplasmosis, but he didn't respond. "Normally, if it was toxo, the lesion would have gone away," says Ashkin. "In this case it didn't, and the reason was it wasn't toxo, it was TB."
Unlike Reyes, who had TB in his lungs, Dorsainvil's infection had spread diffusely throughout his body. That means, like Reyes, he is looking at an extended stay at Holley.
To look at Dorsainvil is not to see a sick man. He is alert, makes eye contact with doctors, and asks questions in Creole (again Hollander translates, with help from another hospital staffer). His x-rays are clear, but that means little given the nature of his particular infection. They do show an increase in flesh on his bones, and in fact Dorsainvil has gained 20 pounds in the four months he's been here.
Nonetheless he's looking at another six months, maybe a year. He's not as contagious as Reyes, but the diffuse pattern of infection won't be easy to eradicate.
He takes the news remarkably well, shrugging his shoulders. "Yeah," he says, agreeing to stay voluntarily.
"A lot of patients say, 'Look, I have been sick so long, I was almost dead,'" says Ashkin. "'I would rather just stay here and take care of myself.'"
Related Links National Center for HIV, STD and TB Prevention
Contact Bob Whitby at his e-mail address: firstname.lastname@example.org
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