Hard Pill to Swallow
A Hopkins unit that fought for AIDS patients now fights for its own survival
When Lynn Sussman-Orenstein began working as a nurse on the Johns Hopkins Hospital inpatient ward for AIDS patients, the disease was a death sentence and fear was in the air. "What attracted me was that I heard that nurses didn't want to take care of a certain group of people," says Sussman-Orenstein, who joined the ward--called the Polk Unit--in 1987. "And I thought, What is wrong with you?"
Debbie Michell, also a nurse, started on the unit soon after. "There was no treatment, and patients were dying so fast," she says. "We were all in the trenches together."
Both nurses still work on "Osler 8," as the ward is now informally known, as do many other staff members from the early days. Over the years, modern medicine has transformed HIV into a chronic disease. Though drug side effects can be severe and no cure has been found, the HIV-positive can now live relatively normal lives, often for decades. Nevertheless, very sick people continue to cycle in and out of the Polk. By and large, they are those who fail to take their medications regularly, for reasons ranging from homelessness to drug addiction to mental illness. For them, HIV remains a deadly disease and the Polk, a second home.
Yet after nearly a quarter century battling the epidemic, the staff of the Polk Unit now find themselves fighting to prove their relevance. In early July, the unit will shrink--from 20 beds to 15--for the first time in its history. The reason? Patient numbers have been dropping and, thus, so is the budget.
The history of the Polk Unit nearly parallels the history of the disease itself. Hopkins was one of the first hospitals in the country to provide specialized care for AIDS patients. The ward, which opened in 1986, initially only accepted patients from the Moore Clinic, an HIV outpatient unit established in 1984 that still serves thousands of patients a year.
The early years saw a steady stream of extremely sick patients. "Then, we were helping people die," says Lisa Scotti, a nurse with the Hopkins AIDS service for the past 15 years. She points to a black-and-white photo on the wall of the unit. In it, a nurse is spooning food into the mouth of a gaunt man. "And now we are helping people live."
That transition began in 1996, with the advent of multi-drug antiretroviral therapy. Social worker Jennifer Maurer, a 15-year Polk veteran, remembers one striking case from that period. During her first year on the job, a patient was in and out of the hospital with pneumocystis pneumonia, once the major killer of HIV patients. "Every month she was sicker, and we got to the point where we were having end-of-life conversations," Maurer says. Maurer didn't see the patient for several months and assumed that she had died. Then one day, a woman in the Moore Clinic waved at her. "I couldn't figure out who she was," Maurer says. "She was beautiful, dressed nicely, hair done . . . and she pulled out this bag and said, 'I'm on these new medicines.'"
The new therapy did not prove to be a panacea, but patients who take their medications regularly can now access treatment primarily on an outpatient basis. The patients who arrive on Osler 8 tend to suffer from social ills well beyond their disease. "Homelessness and substance abuse are the biggest problems," Michell says. "I can't imagine being sick and homeless and wanting to get high at the same time. How miserable."
The unit has two full-time social workers who attempt to connect patients with drug treatment, housing, health insurance, and social welfare programs. But the obstacles can be daunting. Many patients do not have identification. Without it, they cannot access the Maryland AIDS Drug Assistance Program (MADAP), which helps low-income residents purchase medication. And to get ID, patients need a birth certificate, which they often don't have. "It's just one big mess," Maurer says. "And that's frustrating because you've got a medical team who says they need to start meds right away."
It's not only the social workers who take on these sorts of problems. One afternoon, Sussman-Orenstein pauses during her rounds to vent. "I have a 23-year-old with fever and pneumonia," she says. "He has swollen feet, and they think the swollen feet are due to poor nutrition. That is unacceptable!" She leaves, shaking her head.
Scotti nods. "We really dive into people's issues," she says, "HIV is a social illness and if you really want to combat the disease, you have to."
The Polk Unit is known for the individual attention its patients receive. Nurses often call their patients once they've been released and remind them to take their medication. On holidays and birthdays, they throw parties. Stacks of photo albums, each packed with pictures, thank you cards, and obituaries, sit in the common area. Some patients have been in and out of the unit for nearly as long as the senior staff, and "We're like family" is a common refrain.
Though everyone fears the consequences, no one is quite sure why patient numbers have recently dwindled. Nearly as many Baltimoreans were diagnosed with HIV in 2007--the latest year for which statistics are available--as in 1995, according to the Maryland Department of Health and Mental Hygiene. But it may be that HIV patients are healthier than they once were. The Moore Clinic has not seen a comparable drop in patients, which may mean that patients are getting the care they need on an outpatient basis. John Bartlett, who started the AIDS service when he was head of the Department of Infectious Diseases, favors this argument.
"We've been punished for our success," he says. "It's not just us--it's all over the country."
Yet the University of Maryland Medical Center's specialized HIV service has actually recently seen a slight increase in admissions.
The nurses on Osler 8 tend to attribute the dip in patient numbers to the unit's habit of segregating patients with infections such as drug-resistant staph by room. This means that the Polk often must send their patients elsewhere to avoid exposing them to infection. Though those patients remain under the care of the AIDS service, they are not counted as Polk patients.
Others speculate that Hopkins' recent expansion in East Baltimore has effectively erased the neighborhood that used to depend on the hospital. (Though the Polk's drop in patient numbers is particularly acute, the hospital as a whole has seen a recent decline in admissions.)
The unit has taken a number of steps to beef up the numbers. All HIV-infected patients are now accepted in the Polk, not just Moore Clinic patients. And last fall, the unit began actively recruiting patients with other infectious diseases. That alone has helped bump up the numbers by about 10 percent, nurse manager Sondra Garlic says. She thinks that will be enough to save the ward from extinction.
Medically speaking, the need for a specialized HIV/AIDS unit is arguably less critical than it once was. Now that they are living longer, AIDS patients often suffer from complications common to the general population--hypertension, diabetes, and cardiac and renal problems. "[The infectious disease doctors] say, 'When I go up on the AIDS ward, they don't need my infectious disease talent,'" Bartlett says. "They need general medicine doctors." But, he adds, HIV drug therapy remains complex in terms of interactions and side effects, and the old opportunistic infections do still appear on the ward.
Yet perhaps the biggest argument for preserving the Polk Unit is only tangentially a medical one. The ward functions as a home base for people whose lives are often chaotic, and from that stability can come healing. The staff on Osler 8 universally agree that the loss of the unit would be devastating for their patients. "People already don't want to come to the hospital," Sussman-Orenstein says. "I think they would come even less frequently."
Kimberly Holdclaw was one of those who initially stayed away. When she was diagnosed in 1996, she thought her life was over. "I just wanted to act like it wasn't real," she says. "I thought about taking my life, and then I started prostituting." At 47 years old, Holdclaw has been a drug addict for more than half her life. She first came to the Polk in 2006. "I put them people through so much because I was resistant," she says. "I didn't want to believe I was as sick as they told me."
Now she sits on a hospital bed in a private room, a basketball jersey and pajama pants hanging from her thin frame. She has only been clean for three weeks--all of which were spent in Osler 8--but she says she's hit a turning point. "They took such good care of me," she says. "They said, 'You are a very sick woman. You're gonna die if you don't do what we tell you.'" She wipes her eyes. "I realized I wanna live."
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