September 8, 2005
Until the morning of Aug. 29, New Orleans was the center for HIV care in Louisiana with many of the state's 15,000 HIV-positive residents. The city had the highest number of newly diagnosed cases and the second-highest HIV/AIDS case rate in the state, below only the Baton Rouge area. It's no surprise, then, that the city served as the headquarters for the Louisiana state HIV/AIDS program, or that it was the primary setting for HIV research in Louisiana.
But as New Orleans found itself transformed, in the course of one week, from bustling city to ghost town, the city's HIV-positive people were suddenly scattered to the winds, along with its vital core of HIV services.
One of the HIV care providers displaced by Hurricane Katrina is Noel Twilbeck, the executive director of the largest AIDS organization in the city, the New Orleans AIDS Task Force.
Before the hurricane struck, the New Orleans AIDS Task Force fielded calls to the state's AIDS hotline and in 2004 helped more than 700 individuals with primary medical care, medication assistance, housing, transportation, mental health treatment, substance abuse treatment and other needs. It also provided robust HIV prevention services, HIV testing services and food delivery services. Now, there is nothing.
Twilbeck himself has fled to Houston, Texas, where he's been given office space in the Montrose Clinic, a Houston HIV medical facility that has begun stepping up its efforts to reach out to displaced HIV-positive people in the area.
"The immediate need is identifying individuals and giving care," Twilbeck said during a cell phone conversation while on his way back to New Orleans to survey the damage to his house. He has heard from some of his New Orleans staff members through a link he placed on his Web site and through calls to his cell phone. Some say they have run into clients in some of the shelters throughout the region where they are being housed.
Twilbeck is gratified that so many of the AIDS agencies in the southern United States have stepped up to the challenge of assisting a sudden rush of people in need. Baton Rouge alone, he said, has three HIV/AIDS agencies trying to pool their resources in order to provide services. He has stayed in close touch with many of the Louisiana AIDS organizations trying to provide services to the evacuees.
"We are trying to identify [HIV-positive clients] and see what we can do [for them] in the future, if we can ever open our doors again," Twilbeck says. "My focus is: What are the next steps? There is no precedent for what happened to the infrastructure."
In addition to his efforts on the ground, Twilbeck is also trying to keep his Web site updated with information, just in case some people with HIV can benefit from it. "No one knows where things are, but the communities are rallying together to help," he explains. "Everyone has to wait in line ... but it seems like there are people there to help. At least that's what we know now."
The biggest problem for AIDS workers in areas where evacuees have ended up has been identifying the widely dispersed community of HIV-positive people. "One of the problems with helping people with HIV who have evacuated the hurricane areas is that few identify as HIV positive," says Claude Martin, executive director of Acadiana C.A.R.E.S, in Lafayette, La., a small city of about 180,000 40 miles to the west of Baton Rouge.
Lafayette was largely spared from the direct impact of the hurricane, but is now one of the many cities that have become a new home for people who lived in Katrina's path.
Martin acknowledges that disclosure is a particularly big issue in rural areas and in the southern United States. Sharing housing facilities with a large number of strangers, particularly in shelters where there is little to no privacy, makes the prospect of disclosing even less appealing. Many people with HIV fear how those in the next bed will react, Martin says. To be safe, many people may avoid disclosing to the medical staff at their shelter.
But Martin is undaunted. The need to identify people with HIV and give them access to specialized care is too great to ignore, he says. He has temporarily hired four HIV case managers -- all New Orleans evacuees. They will be helping with a variety of things, including visiting local shelters in the hope that they will be able to recognize New Orleans clients and share with them information about the extensive HIV care available.
Martin says that his staff have so far managed to identify and house 30 HIV-positive people and their families who were found at the shelters. It is important to move HIV-positive people out of the shelters being used to house hurricane evacuees, Martin says. This is particularly true for people with a low CD4 count.
"People with compromised immune systems shouldn't be in these large facilities with lots of sick people," Martin says. His organization, Acadiana C.A.R.E.S., owns a 7,000 square-foot residential facility in Lafayette. So many people were in need of housing that they turned a large conference room in the facility into a dorm.
Outside of Acadiana C.A.R.E.S.' facility, however, housing in the Lafayette area has been increasingly hard to come by. Although Martin's organization has funding on hand to pay for permanent housing for people with HIV, he says that they can't find any apartments -- in the last week, the available housing has disappeared, just as it has throughout the area as evacuees from the coast have migrated north. (Baton Rouge, which is closer to New Orleans, has seen an influx of 200,000 or more people that has also caused a major housing crunch.)
Martin says that most of the HIV-positive evacuees he has talked to have gone without their HIV meds for days. Some people, he says, left their homes in a panic without their meds; once they arrived in Lafayette, it took several days for Martin's organization to get them their meds, particularly if they didn't know all the names of all the meds in their regimens. Even those who brought their HIV meds with them encountered problems. Some of their meds required refrigeration, but evacuees had no such luxury; instead, they stopped taking that med and eventually, perhaps because they realized it was not a good thing to take only part of their regimen, they stopped all of the meds. Which actually is a good thing, since taking only one or two meds in a three-drug regimen risks the creation of HIV drug resistance.
Unexpectedly, the massive displacement of people caused by Katrina has brought to light a fact that normally goes unnoticed by most people with HIV: federal AIDS funds tend to be doled out mainly to the cities hardest hit by the epidemic, leaving the rest of the country to make do with whatever funding remains.
Compared to the rest of Louisiana, for instance, Martin says that New Orleans received most of the money ($7 million out of $11 million) doled out to the state through the Ryan White CARE Act. A person with HIV living in New Orleans who qualified for the state's AIDS Drug Assistance Program (ADAP) received up to $1,200 a month for HIV-related medications other than antiretrovirals. However, when those New Orleanians were forced to leave their city, they entered a region -- comprising most of Louisiana and the rest of the South -- where the cap on non-antiretrovirals is $1,200 a year. How this will eventually play out is unclear. New Orleans has no services functioning now and it has a huge amount of money in federal HIV/AIDS monies that will have to be redistributed.
In the meantime, the National Alliance of State and Territorial AIDS Directors (NASTAD) has been working hard to make sure that all the HIV-positive evacuees on ADAP who need meds will get them, no matter which ADAP program they were on. NASTAD has asked states to approve the provision of services or drugs and medical services to evacuees if state regulations allow. Most, if not all, states have responded and are waiving residency and other requirements in order to provide services and medications for people who ask for assistance.
Murray Penner, who is deputy executive director of domestic programs for NASTAD, began to work on arranging this since just three days after the hurricane.
"There are lots of impediments [patients face] getting to services," he says. "I think we are just starting to see people who are making it to ADAP. We expect there will be plenty more people and states are bracing for it."
He says that, as of Sept. 8, there were 35 patients from Louisiana on the Texas ADAP and even though Alabama has more than 300 people on a waiting list, five evacuees with HIV were allowed to continue their treatment regimen and are now on the Alabama ADAP program. Penner notes that six of the eight pharmaceutical companies manufacturing HIV medications have agreed to replenish at no cost all the medications that these state ADAP programs provide to evacuees from other states.
This is good news for the 1,700 HIV-positive patients from New Orleans who are on ADAP. However, New Orleans' dubious status as the epicenter of the state's HIV epidemic also meant that the entire state's AIDS infrastructure was located there. With offices now closed, there is no way to access the medical records housed there. This makes it impossible to verify someone's membership in the ADAP program if they don't have their ADAP card or their prescription bottles. But with the NASTAD agreement, ADAP patients from New Orleans won't have to worry about proving their ADAP membership, although they will have to still fill out an ADAP form.
If people have their ADAP card or prescription bottles on hand, Martin says, he can get them meds with that. If not, he sends them to physicians who will examine them and write prescriptions. Martin says his organization tries to get each patient a week's worth of all of the HIV meds he or she normally takes, in hopes that it will carry them through until the statewide ADAP system is back up. This may take some time, although there are plans underway for the Louisiana state HIV/AIDS program to be relocated to Baton Rouge.
By all accounts, Louisiana's AIDS organizations are trying their best to meet the needs of the relatively few people with HIV they have so far been able to find. They are, in a way, now preparing for a different type of storm: the urgent medical, supportive and housing needs of a large population that is right now scattered, but which is almost certainly already in need of their help.
This is the second in a series of articles examining the effects of Hurricane Katrina on the U.S. AIDS community. To read other articles in this series, click here.
This article was provided by The Body.
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