September 8, 2005
For one thing, most HIV-positive evacuees probably did not get the chance to take their HIV medications along as they fled. Or if they did, an additional supply will soon be needed -- a challenging proposition whether their meds are provided by private insurance, Medicaid or their state AIDS Drug Assistance Program (ADAP). Each of these plans requires identification and, under normal circumstances, most plans will not provide medications out of state. The risk is that evacuees will run out of some medications and end up taking only part of their regimen. Doing this risks the creation of HIV drug resistance, which would dramatically limit their future treatment options.
Scott Russell, M.D., who is the medical director for 17 Coastal Family Health Center clinics in Mississippi, fears that there is a large number of people who had to or will have to interrupt their HIV treatment. This clearly is true for the thousands who have been evacuated from New Orleans, but it is also true for the thousand or so HIV-positive patients under Dr. Russell's care in Mississippi -- including the more than 300 HIV-positive patients Russell cares for at two Coastal Family Health clinics that offer free or low-cost care, one in Biloxi and the other in Gulfport.
Besides the fact that both HIV clinics are closed indefinitely, Russell points to two key reasons why many people with HIV have had to go without their medications after the hurricane: extremely long lines for expensive gasoline and, for eight days after the hurricane struck, few open pharmacies.
Dr. Russell advises patients who are missing one or more of the drugs in their regimen to stop all their meds at the same time to avoid causing their HIV to become resistant. "I have a lot of people with limited options and it will be a bad thing if they lose the option of their current treatment," he says.
"This is an economically depressed area," Dr. Russell notes, "and now many of my patients are homeless. Before, they had a community and a place to live; now they have nothing."
"I already had a lot of homeless patients," Dr. Russell continues, "and now I'm going to have more, which creates its own problems with meds that have to be refrigerated."
"We were inundated [with patients] before the hurricane," Russell says. But since Katrina's arrival, the clinics have been eerily empty. A floor of mud several feet thick covers one facility, and although the other clinic is intact, there remains no electricity or running water.
More than a week after the hurricane struck, the city of Biloxi, with its population of 50,000, still had no electricity. Dr. Russell, who has lived in the Biloxi area most of his life, reports that when he returned to town for the first time after the hurricane, all of the town's landmarks had disappeared. Although his house was still intact and, thanks to a backup generator, his refrigerator still works, his beach home is now a pile of sticks. A nurse at one of the clinics had been renting it for the last few years, and now everything she owned has been destroyed. Yet, as Dr. Russell recounts, she is determined to find a way to continue helping her HIV-positive patients. "She called me to say that she was safe -- and asked when she can get back to work."
Dr. Russell has been in touch with much of his HIV clinic staff. "Some of our providers are homeless," Russell says. "Others have evacuated as far away as to Canada, and it doesn't look like they are coming back immediately." Resigned, he quickly adds, "But we have no clinic now anyhow."
No one really knows for sure how people with HIV are faring throughout the Gulf Coast. In places like Biloxi, with more than 5,000 of its buildings destroyed, communication is rare and difficult, with sporadic phone service. We communicated with Dr. Russell through his cell phone, which he kept recharged in his car, but even this was continually interrupted.
With the AIDS clinics not yet open and Russell's staff still dispersed, it will be a while before anyone can meet the needs of most of the area's HIV-positive people, particularly since they too have been scattered throughout the region.
The Biloxi Regional Medical Center is where Dr. Russell provides care right now. The hospital is providing housing for the few healthcare providers who remain in the area. They are also providing gas for hospital workers who still have houses to return to. Volunteer HIV specialists from Florida are reportedly on their way down to help. Dr. Russell says he needs all the help and all the medications he can get.
While Dr. Russell works with the little he has in what remains of Biloxi, other HIV healthcare providers in surrounding areas have been hard at work preparing to provide medical care and support for the evacuated HIV-positive people.
In Houston, Texas, where many of the Katrina survivors from New Orleans have been relocated, AIDS organizations and clinics have been busy organizing. Two AIDS clinics, the Montrose Clinic and the Thomas Street Health Clinic, prepared for the influx of patients. The Montrose Clinic stayed open throughout the Labor Day weekend. They also sent workers to the city's shelters to reach out to HIV-positive people.
Montrose Clinic workers understand that those who fled New Orleans are unlikely to have medical records or proof that they are HIV positive, so they are administering a rapid HIV test to everyone who comes in asking for HIV medications. Once the test confirms HIV infection, the clinic sends a prescription to Walgreens, where people can pick up their medications for free. The clinic is determined to provide HIV medications to all who need them. If people aren't sure which drugs are in their regimens, they will be referred to an HIV specialist. The clinic has set up an evacuee emergency hotline at 713-830-3047.
The Montrose Clinic is also trying to find housing for people with HIV because of the very real fear of discrimination if their status is revealed while living in a shelter with thousands of other people. In fact, Nelson Vergel, an HIV-positive AIDS activist who lives in Houston, reported, "I learned that many of the evacuated people who are gay and lesbian have been assaulted, either verbally or physically, at the shelters. Many others have expressed fear of revealing their HIV status and thus are not getting badly needed medications."
The need to get people into care and back on medications is what has energized many people in the AIDS community far beyond Houston and the Gulf Coast area. Howard Grossman, M.D., the executive director of the American Academy of HIV Medicine, the largest professional organization of HIV healthcare providers in the United States, has been working tirelessly to ensure that evacuees with HIV get the care and medications they need. He has also created a growing section on his site called "HIV/AIDS Emergency Gulf Coast Coverage" with comprehensive information for both patients and healthcare providers and a web log where people can post additional information or first person accounts.
In addition, Dr. Grossman has compiled a list of resources and medical instructions for front-line healthcare providers who work at shelters and will be caring for displaced HIV-positive people. Such guidance is important because general practitioners know little about the intricacies of providing care for someone with HIV.
Dr. Grossman is also fielding phone calls from dozens of HIV healthcare providers throughout the country wanting to volunteer in the affected areas. The problem, he says, is that in places like Biloxi, roads have been closed off. So Dr. Grossman has been trying to find the right federal contact to facilitate getting these volunteers on the ground. Not only will the health workers need access to areas of the Gulf Coast where help is most needed, but they'll also need a state medical license.
Dr. Grossman stresses the importance of guidelines for dealing sensitively with displaced HIV-positive people. "We have to be very careful," he explains. "HIV-positive people are afraid of being seen as special in this situation. They also don't want to be identified as HIV positive."
Beyond the need for prudence, Dr. Grossman notes that HIV prevention must be made readily available in shelters and other areas where displaced people are being housed. "In general, in any disaster like this -- with any [displacement] -- we always see an increase in HIV transmission," Dr. Grossman warns. "It's important that condoms are available. ... It's something we should be prepared for."
Dr. Grossman added that rapid HIV testing is critical for these areas. Getting a cheap and generous supply is something he is still working on. AIDS organizations are using the tests to confirm that people are positive so they can quickly get them their meds.
Getting HIV medications may also become somewhat easier thanks to many of the major pharmaceutical companies who have announced they will provide their meds at no cost to those who need it in the affected region. Most have agreed to refill all ADAP prescriptions at no cost in the Gulf states. For instance, Gilead Sciences, which makes FTC (emtricitabine, Emtriva), tenofovir (Viread) and Truvada (tenofovir/FTC), says it will refill all prescriptions at no cost for ADAPs in the Gulf states and directly to individuals who have been relocated outside the region. The company also says it will temporarily offer expedited enrollment in its "Advancing Access" Patient Assistance Program, which provides free medications to people in need.
The best bet for anyone who has run out of HIV medications is to call an AIDS organization in the area where they have relocated to get help. Click here for a state-by-state list of AIDS organizations. Lots of strings have been pulled behind the scenes to help evacuees get their needed medications. The U.S. Department of Health and Human Services has issued a statement allowing people to use their Medicaid cards in other states. They have also asked pharmacies to fill 30-day prescriptions if presented with an empty prescription bottle, without requiring a new prescription.
In any case, getting information about these programs into the affected areas is still a challenge. Because of the intensity of the destruction, most people in these areas still lack phone and Internet service. More than a week after the hurricane struck, information about all the help available still had not been disseminated widely; Dr. Russell, the Mississippi HIV specialist, seemed shocked when he was told that he could get a hold of HIV medications. "It would be a dream come true if I can get my hands on the meds," he exclaimed. "I can use meds in a heartbeat. It would be an enormous help, because patients may not have a way to get to the health department."
Dr. Russell says he already knows of a few of his patients who have lost everything. It may be small comfort to these people, but they do have places to turn: Besides the shelters and churches, there is South Mississippi AIDS Task Force's Augusta House, which houses people with HIV.
The patients Dr. Russell has heard from, through the limited phone service that is available, were running out of the meds they normally receive through Mississippi's ADAP. But he hasn't heard from most of his patients, suspecting that many have evacuated and have not made it back to the area.
Evacuees with HIV who receive their medications through ADAP can receive additional meds through the ADAP of other states. For a list of phone numbers for ADAP offices across the country, click here. For survivors still in Mississippi, the state's ADAP program, which normally has strict rules for who qualifies for free HIV medications, has decided to simply send the region's regular order to the Jackson County Health Department in Pascagoula. Russell says the health department has even been allowing relatives of evacuees with HIV to pick up meds.
Picking up HIV medications in a new place or asking a volunteer in a shelter where to get HIV medications is a thorny issue for the simple reason that it involves disclosing your status to a stranger. Many people are reluctant to take this risk. This is true everywhere in the United States, but for HIV-positive people in the Gulf region, the experience of stigma and discrimination is not uncommon. To address this issue, AIDS organizations in many affected states have been sending case managers with flyers to many of the shelters to reach out to HIV-positive evacuees. Many AIDS organizations offer not only access to HIV medications and medical care, but they are helping to get HIV-positive evacuees out of shelters and into other housing.
There are still many obstacles remaining for people with HIV in the Gulf area, and it will take a long time for things to return to normal. But, through lots of networking on the phone and through e-mail, the HIV medical community and AIDS organizations across the country have clearly joined forces to help anyone displaced by the hurricane.
This is the first 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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