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  WINDY CITY TIMES

New Orleans AIDS Agencies Struggle
by REX WOCKNER
2006-04-05

This article shared 5168 times since Wed Apr 5, 2006
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Pictured NO/AIDS Task Force Executive Director Noel Twilbeck, right, and Special Events Coordinator TJ Rogers inside the mobile medical clinic given to the organization by Elizabeth Taylor. Photos by Rex Wockner

Government and community-based HIV/AIDS agencies are still struggling to get back on their feet seven months after Hurricane Katrina broke the levees and flooded 80 percent of the city in up to 20 feet of water.

'I'd say we're at 40 to 50 percent,' said Beth Scalco, director of the Louisiana Office of Public Health HIV/AIDS Program.

'Five of our 10 community-based prevention contractors basically went out of business due to heavy damage to their buildings and because they experienced a big loss of their staff in terms of people who decided not to return to New Orleans,' she said.

The Medical Center of Louisiana at New Orleans HIV Outpatient Program ( HOP ) , a major provider of HIV care for uninsured and underinsured individuals, is still operating out of a temporary location with reduced services.

'Right now our quarters are cramped, to say the least,' said manager Kathleen Lincoln.

The program previously offered both primary care for HIV patients and specialty care in some 20 areas, such as dermatology, hematology, oncology, ophthalmology and gastroenterology. Now, patients who need to see specialists are sent to Houma and Baton Rouge, 60 and 90 miles away respectively.

'It means quite a bit in the way of travel for them,' Lincoln said. 'It means a transportation burden both in costs and logistics. Starting to bring back specialty care is the clinic's biggest challenge now.'

'We're glad that it's open,' said Scalco, 'but ... the HIV Outpatient [Program] is nowhere near 100 percent, and that has a significant impact. ... In some areas, services are not meeting the needs of the clients that have returned [to the city].'

The community-based NO/AIDS Task Force finally was able to move back into its offices in mid-March. Forty-three of its 67 employees have come back to town.

'We lost about a third of the staff because of people being displaced by the hurricane,' said Executive Director Noel Twilbeck Jr. 'The building in which our offices are located was under about six feet of water. There was no electricity until January.'

Overall, about 189,000 of New Orleans' 484,000 residents have returned home following the storm and mandatory evacuation of the entire city. Many of those who remain elsewhere no longer have homes, jobs or schools to come back to. Only 20 of the city's 124 public schools are open.

All HIV services were shut down for several weeks after the hurricane. 'Some were out of service longer than others, depending on their location, if they were able to get staffing back and if they actually had any clients,' Twilbeck said.

For this and other reasons, some people with HIV went without their antiretroviral drugs. 'People had treatment interruptions right after the storm and for months after the storm,' said Scalco.

'For any of us who experienced evacuation, we were expecting to be gone for two or three days,' she said. 'In the evacuation turmoil, people often did not pack everything they needed. A lot of people also were unable to access medications [elsewhere]. It also takes some people a lot of time to re-engage with medical care, which means they could be going several months without medication.' In addition, Scalco said there are some individuals who stopped taking their drugs because they had never revealed their HIV status to the friends or family members to whose homes they evacuated.

Scalco criticized the federal Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which pays for medical care for many HIV-infected people, and the CARE-funded AIDS Drug Assistance Programs for their lack of uniformity from state to state. 'The way the CARE Act is structured leads to a lot of problems in an emergency situation,' she said. 'ADAPs vary from state to state in terms of financial eligibility and medications that you can get through the formulary. So if you had a person who left Louisiana and went to another state, they weren't guaranteed that they could get the same medications, or they were making too much income to get their medication from another state. There's a real problem with that program not having consistency.'

However, New Orleanians with HIV who evacuated to Texas, which saw the largest number of Katrina refugees, got lucky, Scalco said. 'Texas did not have an ADAP waiting list and they worked very well with us to accommodate our clients and quickly enroll them in their ADAP program,' she said. 'There were other states around us that did have a waiting list, such as Alabama. However, if they received an evacuee from Louisiana, they made every effort to accommodate them.'

Many New Orleanians ended up in, and have remained in, Baton Rouge, La. For people with HIV, 'what they have found is that the set of services that they used to get in New Orleans are no longer available because the resources aren't available to support that level of services,' Scalco said.

'We really need some sort of core services and core set of medications that people who are living with HIV can count on no matter where they live in this country so that when someone experiences an emergency like this, there's not going to be a huge discrepancy in what they can get in one place versus another,' she said.

KATRINA CHANGED HIV/AIDS DEMOGRAPHICS

Meanwhile, the face of HIV/AIDS in New Orleans has changed dramatically because of the disaster.

The HOP clinic's clients now are close to 80 percent male, up from 65 percent. That may be because gay men have returned to the city faster than straight people, who are more likely to have kids who need to go to school, and because out-of-town laborers have arrived in the city without their families.

The clinic has seen a doubling of Latino patients as Mexicans have arrived seeking work in the construction sector. 'The literature suggests that the migrant population is at high risk for HIV,' Lincoln said.

But, overall, the HOP clinic is seeing far fewer people than before the disaster—850 since November, compared to about 3,300 per year previously.

'Prior to the storm, about 69 percent of those living with HIV/AIDS in the New Orleans area were African-American,' said Scalco. 'Predominantly African-American neighborhoods received much more devastation than some Caucasian neighborhoods, which leads us to believe that it's going to take a longer period of time for the African-American population to return.'

The NO/AIDS Task Force's HIV clinic is seeing 'no more than half' the number of patients it had before the hurricane, Twilbeck said. 'There is an interesting phenomenon of our seeing people that are new to care, which is a bit shocking for us,' he said. 'I don't know if it's like, 'Gee, I've gone through all this; I might want to take care of my health now' or what, but we would not have predicted this.' The Task Force hasn't had time to categorize its current clients.

'NO/AIDS doesn't even have a grasp of what we're seeing on a daily basis,' Twilbeck said. 'We're just struggling to get all our programs and services back up and going, so we haven't done a lot of gathering data. The New Orleans Regional AIDS Planning Council is trying to implement a rapid assessment right now to get an idea of who's back and who is planning to come back.'

'We're trying to get a better handle,' agreed Scalco, 'on what the epidemic looks like now in New Orleans—which people still living in the city and in the surrounding parishes still need to be served, and who has left New Orleans and needs to be linked up with services in a new jurisdiction.'

She said the state has up-to-date information on 2,170 of the 7,431 people with HIV who lived in metro New Orleans before the storm. Eleven percent of those 7,431 are confirmed to be back in the area, though Scalco acknowledged the state likely hasn't made contact yet with many who have returned.

LIZ TAYLOR MAKES BIG DONATION

Amid all the bad news and devastation, there has been one surprising bright spot at the NO/AIDS Task Force.

Elizabeth Taylor recently gave the organization a large mobile clinic to mark her 74th birthday—a 37-foot, motorhome-like vehicle equipped with two exam rooms and X-ray equipment.

'Martin Delaney at Project Inform brokered this,' Twilbeck said. 'He said he knew a celebrity donor who wanted to do something for people living with HIV/AIDS in the New Orleans area, and asked if we might be able to use a mobile medical unit. I said I'd have to check with our doctor and nurse and get back to him. Then I hung up the phone and kicked myself in the ass and called him right back and said, 'Of course we can use it.' I don't know what I was thinking.'

Twilbeck and his domestic partner recently flew to Ohio and drove the huge van back from the manufacturer. It already has been placed in use for HIV testing and counseling.

'What we don't have yet is funding to keep it in full use,' Twilbeck said. 'The new cycle for Ryan White Title I grants just went in, so we're trying to figure out how we're going to maximize the use of this. We don't have it all in place right now. We don't have the staffing.'


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