About 8,000 people with HIV and AIDS who were displaced by Hurricane Katrina now face the massive challenge of trying to manage their disease without their doctors, their clinics and their support systems.
"I'm very frustrated right now," said Noel Twilbeck, executive director of the NO/AIDS Task Force, the oldest HIV/AIDS service organization in the Gulf South. "We absolutely have to get people their medication. This is a frightening situation."
When Michael-Chase Creasy, 49, fled New Orleans, he brought his HIV medicines - but not a lifetime supply. And when he saw television footage from the safety of a Houston hotel room of flood waters rising above his own 1820s Canal Street home, he knew he would not be returning soon and he was in serious trouble.
He needed to ensure that his prescriptions would not be interrupted: "These medicines are what keep me healthy and ultimately alive. If I go too long without it, I can really atrophy or descend rapidly."
HIV-infected people typically take a "cocktail" of medications that can include upward of 20 pills a day. When patients go off their medication, the virus can multiply and they develop resistance to the drugs. Studies have repeatedly shown patients have a better chance of keeping their HIV under control by not missing doses.
The NO/AIDS Task Force has found a temporary home at the Montrose Clinic in Houston, a medical center that specializes in the needs of the lesbian, gay, bisexual, and transgender community. Montrose's executive director Katy Caldwell said evacuees have been arriving by the dozens.
Creasy was one who found help there. Doctors swiped the saliva on his gum to confirm he is HIV positive and then loaded him up with prescriptions and free samples. His problem is solved, for now. But his health insurance is set to run out Sept. 15 when the trade exchange where he worked as a media broker goes out of business.
Caldwell said lack of funds will not affect
"We treat them first, worry about the money later," she said.
"Thank God for Katy," said Twilbeck, sitting by her side and recalling his own dash out of New Orleans as the hurricane approached with 25 family members, eight dogs and a lizard.
The AIDS Alliance for Children, Youth and Families estimates at least 8,000 HIV-infected people are now trying to get care. The organization is working to get money and supplies to providers, who are struggling to find their patients.
Federal officials say they're doing their best to streamline care to HIV-infected patients, and several drug companies are offering free medication. Meanwhile, providers in Florida, Tennessee, Alabama, Mississippi, Georgia and beyond report that displaced patients are showing up at their clinics and asking for new prescriptions, quickly.
On a billboard in the Houston Astrodome, posters - as well as onsite medical providers - are advising HIV-infected people to go to the Thomas Street Health Center for a quick AIDS test, a physical examination and a month's supply of their medication.
The U.S. Health Resources and Services Agency, the federal agency that provides health care for people infected with HIV, completely lost its service centers in Biloxi and New Orleans. The centers in Hattiesburg and Mobile are flooded and lack power.
Social stigmas may also limit some access to care.
"People are not going to walk up to the American Red Cross and say, 'Hi, I have HIV.' More likely they're going to try to find an HIV provider," said Diana Bruce, a spokeswoman for the Washington DC-based AIDS Alliance for Children, Youth & Families.
Those evacuees who do seek medical assistance from providers at emergency centers may end up with doctors who have no experience caring for people with HIV.
Dr. Nicholaos Bellos, president of the Dallas-based Southwester Infectious Disease Associates, helped launch an online triage program for Hurricane Katrina survivors. The program advises doctors working in emergency clinics how to care and medicate patients with HIV. Their Web site also provides patients with information about where to find specialized care. including maps.
Bellos said people with HIV and AIDS have complex medical histories which are often well documented at their clinics. It's hard to treat them without this detailed background, he said.
"Not many of these people had a chance to go by and pick up their medical records on the way out of town," he said. "One of our biggest problems, right off the bat, is just documenting their HIV-positive status."
Viral load tests, to see how much HIV is in someone's bloodstream, as well as T-cell tests, to determine the strength of their immune system, are important factors when deciding what to prescribe.
Kaye Ray, who runs a 10-clinic family HIV program out of Hattiesburg, Miss., said that it took eight days before even their first clinic could reopen. Staff members drove door to door checking on patients until they ran out of gas. Late last week, she received some much-needed funds from the AIDS Alliance Emergency Fund to buy diapers and transportation for HIV-infected families, many of whom have lost their homes.
Many advocates said this week that with an impending public health disaster looming in the Gulf region, they feared that people living with HIV and AIDS might slip through the cracks.
"There are many immediate, midterm and long-term issues that will literally be life and death for people living with HIV/AIDS," said Terje Anderson, executive director of the National Association of People with AIDS in an urgent letter seeking help from Health Secretary Michael Leavitt.