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Living With HIV/AIDS 

Post-Katrina Life-saving medical services are available for those with AIDS in New Orleans, but providers wonder where their former patients are.

In order to return to the New Orleans area, every resident has a mental list of essentials, needs that must be filled. Topping the list for almost everyone is housing. From there, priorities diverge in various directions: employment, schools, healthcare, transportation and a rebuilt levee system are but a few of the requirements. For more than 7,400 people, coming home necessitates finding adequate services for their chronic disease, HIV/AIDS.

As Gerald F. sits at a table in a crowded local restaurant and talks about his Katrina experience, he smiles often and is almost apologetic about his own concerns. Living in the French Quarter, he helped a number of his elderly neighbors leave the city following the storm, and only when they were safely evacuated did he decide to go himself. When he left, Gerald couldn't bring much, but he had to take a lifeline -- his medications. Gerald is HIV-positive, and without his daily drug regimen he could develop AIDS, still an often-deadly diagnosis. When he left town, he was down to five days' worth of medicine.

Gerald, who is in his mid-30s and asked that his real name not be used, quickly found assistance. A pharmacist in Mississippi filled a month's worth of his prescriptions. When he arrived in Nashville, Tenn., where he remained until January, Vanderbilt University had set up a division of its HIV/AIDS clinic just for Katrina evacuees. The clinic was convenient, but Gerald wanted to go home. Complicating matters, he was laid off from his job and lost his insurance benefits. He used to pay out $125 per month in insurance co-payments, but without insurance, the costs of treatment would skyrocket to $2,500 per month. Before returning to New Orleans, Gerald called home to make sure his needs could be met.

"I had friends here who were already hooked up with the clinic," he says. "They knew if I was unemployed and uninsured, I could still get services. The clinic is looking for patients, and if they don't find them, they will have to shut down because funding will be cut. No patients, no need, no clinic."

Gerald is referring to the HIV Outpatient (HOP) clinic formerly housed on South Roman Street; it is now at 1545 Tulane Ave. and is part of the Medical Center of Louisiana at New Orleans. Dr. Lynn Besch, HIV division director at Louisiana State University, is the clinic director. Prior to Katrina, Besch and her staff saw approximately 2,800 clients, many of whom received free care. Katrina scattered Besch's clients and her staff, but by mid-September, she had acquired space for her New Orleans patients in a Baton Rouge clinic. Additional space was arranged for New Orleans evacuees in Lafayette and Lake Charles. Between the three locations, the clinic staff saw 300 people, not as many as Besch thought they would. She realized that many of her clients must have never left, or if they had evacuated, they had already returned to the New Orleans area.

By mid-October, clinics were being run throughout the city by LSU, Tulane University and, as Besch puts it, "whoever was around." When she set up shop on Tulane Avenue, she started with a support staff of only three nurses, a nursing assistant and one clerk. Her suspicion about the number of HIV/AIDS patients in town was confirmed when the number of people coming to the clinic grew daily at a rate of 10-20 returning patients. With her staff so drastically reduced -- before Katrina, there were seven nurses and four clerks -- there was no way for Besch to know what had happened to her previous clients.

"If we didn't hear from them we didn't know," Besch says. "We couldn't systematically collect reports of where people went."

The state does gather statistics on the whereabouts of people infected with HIV. Beth Scalco, director of the HIV/AIDS program for Louisiana's Office of Public Health (OPH), has been attempting to locate anyone in the state diagnosed with HIV. She is quick to point out that HIV/AIDS isn't the only communicable disease the state tracks.

"It's not just HIV/AIDS there's a long list of reportable diseases. Tuberculosis and [sexually transmitted diseases] STDs are also tracked -- anything harmful to public health."

With the massive population evacuation and displacement, it hasn't been easy. Scalco and her staff use a large number of databases to determine where those from the metro area with HIV/AIDS might have relocated, but she admits there is a certain amount of guesswork involved. "We're using public hospital databases to track where patients might have gone," Scalco says. "If they received care in Alexandria, our best guess is that they're living in Alexandria."

Before Katrina, OPH identified 7,420 people with HIV/AIDS living in the eight-parish metro area. So far, the office has managed to find information on only 2,177 of those. In order to generate an OPH report, a patient has to obtain medication, medical care, or social services paid by federal funds. For those patients with private insurance, a report is sent to OPH if any HIV/AIDS lab work is performed.

Some of this low reporting number can be attributed to people moving out of state, because if they receive services outside Louisiana, the new state isn't required to send the information to the Louisiana OPH. Some states do, but that varies. Scalco's bigger fear, however, is that the numbers are lower because patients have stopped taking their medication. Besch believes some of this occurred because of where patients evacuated and their housing situations.

"There were interruptions in the drug regimen," Besch explains. "Some were staying away from a big city, or they didn't want those they were staying with to know they were HIV-positive. So they ran out of their medication. We don't know how many of the HIV/AIDS patients this happened to."

Scalco believes some patients may have quit taking their medication because of the drugs themselves. Highly Active Antiretroviral Therapy (HAART) blocks HIV protease, an enzyme that the virus needs to reproduce. The drugs are very powerful and may cause a number of side effects such as facial lipoatrophy (the loss of facial fat, which gives the sufferer a gaunt look), pancreatitis and stomach ulcers. According to Scalco, patients might think they are "doing well" because they are feeling better off the drugs. Without the medication, however, the amount of virus inside their bodies can increase and endanger their lives.

Jan Vick, a social worker at the Tulane Avenue clinic, says that depression also can factor into a patient's decision not to take the required medication. "It's sadness, and an antidepressant isn't going to fix it," she says. "You have to go through it. When you put that on top of a chronic illness, it makes everything harder and difficult to cope with."

The OPH has confirmed 1,174 people with HIV/AIDS are now living in the metro area, according to its database, but speculates the number could be as high as 3,200 because the group would not have statistics on those who have not received services.

There is one certainty; the amount of services available at the HOP clinic has declined. Besch sadly notes that there were 10 specialists before Katrina, including a pulmonologist and a gynecologist, who would regularly treat patients. The only additional services offered now are psychiatry, which is provided by volunteer LSU psychiatrists, and pediatric care, which is supplied by Tulane Pediatrics. The specialists were necessary because the disease affects so many systems in the body and because of the possible side effects of the drugs. Vick says that while they were evacuated, her patients realized just how good the services were in New Orleans.

"At first, people were getting their meds filled and they were happy," she says. "Then they realized the medical care they were receiving wasn't as good as they got here."

HOP clients who need specialists now are referred elsewhere in the state or can get care from a specialist in the New Orleans area if they have private insurance. Even without these additional services, Besch estimates more 1,000 clients currently use the HOP clinic.

NO/AIDS Task Force still offers an array of services including prevention education, HIV testing and counseling, community outreach, home-delivered meals and mental health services. T.J. Rogers, public relations and events coordinator for NO/AIDS, says that despite losing a third of its staff, the task force has been reaching out to the community. The recent donation of a mobile medical clinic by actress Elizabeth Taylor will allow it to reach even further.

"This 40-foot unit comes equipped with two examination rooms and a X-ray machine," Rogers says. "We will be able to bring services to those who have trouble accessing care. We're currently working to identify staff for the unit, and we hope to have it working in the near future." Rogers adds that the task force now serves 500 clients, almost 50 percent of its pre-Katrina total.

Unlike many who take HIV medication, Gerald doesn't seem to have lost his appetite as he finishes off a plate of grape leaves. He has been working for a temp agency and is seeking a full-time position with insurance benefits. Coming back home has been stressful, but he is grateful for the chance, and he remembers why this is possible every time he walks into the HOP clinic.

"You go in and you smile at the people taking care of you," he says. "There's nothing wrong with being personable and making someone's day easier. I have a long history with these people. New Orleans is a small community, and you get to know people."

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