HIV patients displaced by Katrina scramble for meds, care

Among the thousands displaced by Hurricane Katrina were an estimated 8,000 HIV and AIDS patients attempting to remain healthy and alive without their usual clinics, doctors, medications, and support systems.

The Health Resources and Services Agency (HRSA), the federal agency that provides health care for people afflicted with HIV, completely lost service centers in New Orleans and Biloxi, MS, and suffered major damage at other centers in Hattiesburg, MS, and Mobile, AL.

Two weeks after the hurricane, HRSA reported that displaced individuals were moving to other jurisdictions and seeking medications and medical care there. States faced several hurdles in providing needed HIV/AIDS care, HRSA said, including 1) lack of authority to provide AIDS Drug Assistance Program (ADAP) aid (pharmaceuticals) and other Ryan White Comprehensive AIDS Resources Emergency Act (RWCA) treatment and care to patients who are not residents of the jurisdiction; 2) absence of patient documentation of eligibility, medical records, or lists of medications taken; and 3) lack of capacity to provide additional care.

HRSA said RWCA grantees in Georgia, Texas, Tennessee, Alabama, Arkansas, and Florida were treating people living with HIV/AIDS from Louisiana and Mississippi. With the approval of their governors, the states and grantees were providing services, including medications, to those in need. Physicians were writing new prescriptions for those who did not have documentation of their drug regimen. For those with no medications and no list of their drugs taken, physicians were doing basic testing before writing new prescriptions.

HRSA pointed to Texas as a model for other states because its ADAPs were enrolling evacuees through a simple, one-page enrollment form to ease the transition. The state also contacted all eight companies that make ADAP drugs to ask that their pharmaceutical assistance programs reimburse the Texas ADAPs, at least for one month, through in-kind contributions of drugs the Texas ADAPs were dispensing to displaced people.

Keep good records

Because HRSA said it couldn't waive its regulations, states receiving evacuees were advised to document the services provided to them in the event reimbursement funds become available. The National Association of State and Territorial AIDS Directors (NASTAD) also contacted the eight drug companies about providing free medications for all Katrina-related evacuees. Some responded positively, while others negotiated with NASTAD over ways to provide streamlined access to ADAPs.

NASTAD assistant executive director Murray Penner tells State Health Watch that state RWCA and ADAP programs have done the best they can in serving HIV patients who come to them, given that HRSA has not been as helpful as they would have liked.

"We haven't been happy with the federal response," he says. "They aren't backing the programs up as much they need."

Penner says to be fair to HIV Bureau staffers in HRSA, it appears they are being held back by staff higher in the Department of Health and Human Services or the administration. Fortunately, he says, states have quite a bit of latitude in the RWCA program to provide services that best meet their clients' needs.

Even several weeks after the hurricane first hit, Penner says it remains "frustrating dealing with HRSA. They still can't say whether client services can be billed to the (RCWA and ADAP) grants."

According to Penner, AIDS programs in Louisiana and Mississippi are under extreme pressure to resume operations but governmental bureaucracy has been standing in the way of that happening.

"There ought to be a better, more flexible response," he says. "It shouldn't be hard to get extensions of deadlines or a waiver for a report that's due."

The NO/AIDS Task Force, the oldest HIV/AIDS service organization along the gulf, based in New Orleans, found a temporary home at the Montrose Clinic in Houston, a medical center specializing in the needs of the lesbian, gay, bisexual, and transgender community. Montrose executive director Katy Caldwell said evacuees arrived by the dozens and lack of funds did not affect access to care.

"We treat them first, worry about the money later," she said.

At the Houston Astrodome shelter, billboard posters and on-site medical providers advised HIV-infected people to go to the city's Thomas Street Health Center for a quick AIDS test, physical exam, and a month's supply of medication.

But experts recognized that social stigma could limit some access to care.

"People are not going to walk up to the American Red Cross and say, 'Hi, I have HIV,'" said AIDS Alliance for Children, Youth, and Families spokeswoman Diana Bruce. "More likely they're going to try to find an HIV provider."

Because evacuees who seek medical assistance from providers at emergency centers could end up with doctors who have no experience caring for people with HIV, Dr. Nicholaos Bellos, president of the Dallas-based Southwestern Infectious Disease Association, helped launch an on-line triage program to advise doctors working in emergency clinics how to care for and medicate patients with HIV. Bellos said people with HIV and AIDS typically have complex medical histories that are well documented at their clinics, but it's hard to treat them without this detailed background.

"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."

What a difference 3 days make

National Association of People With AIDS (NAPWA) executive director Terje Anderson wrote an opinion column noting the irony in the fact that what happened to many hurricane victims suffering from HIV/AIDS came because the storm hit Aug. 29 instead of a few days later.

"Most upper- and middle-class Americans probably don't get the significance of that date," he said. "If you're not someone on welfare, on food stamps, on a disability check, or you're not someone who simply lives paycheck to paycheck, the complete horror of a disaster hitting two days before the end of the month may be lost on you."

But because Katrina hit two days before payments and food stamps are delivered to their many recipients, hundreds of thousands of poor people, working people, old people, and disabled people were not able to get out of the way of the oncoming storm.

"At the end of the pay period, at the end of the month, too many people simply don't have enough cash left to put gas in the car or shell out for a bus ticket out of town for the entire family," Mr. Anderson wrote.

He said for those people, it didn't matter if newscasts said an evacuation was mandatory. Without money for gas, bus tickets, motel rooms, and meals, for the many whose funds were running out at the end of the month, officials might as well have ordered a mandatory two-week vacation in an expensive resort someplace as a mandatory evacuation of their homes.

"If you were going to be homeless and penniless somewhere," he said, "why on earth would you do that far away instead of back home on familiar territory among people you know? So people did what poor people do everywhere: They stayed together in the communities they live in, hanging out with families and friends and hoping that they would survive whatever life threw at them. Surviving a hurricane is just one more in a long series of survival challenges: surviving poverty, surviving hunger, surviving violence, surviving disease, surviving community decay, and surviving the daily assaults on human dignity."

Facing a grim reality

Mr. Anderson said Katrina forced us to recognize something he believes most people in America would prefer to forget — that in the richest country in the world, one only has to scratch slightly below the surface to find millions of Americans who are barely getting by, who live one paycheck away from complete destruction. This is an America, he said, that often doesn't even have the resources to flee from the path of a life-threatening storm, an America facing life and death drama daily.

"Maybe Katrina will wake America up to the vast inequities that characterize our society," Mr. Anderson concluded. "Maybe Americans will be embarrassed into action by the realization that poor people don't have health care, transportation, food, or safety all of the time, not just when the flood waters come. Maybe the in-your-face racial inequalities will finally be impossible to ignore. Maybe we'll understand that thousands of people die unnecessarily every day because of these circumstances. Maybe we'll stop ignoring the floodwaters of addiction, AIDS, homelessness, violence, poverty, poor education, incarceration, and discrimination that have been inundating these communities. And maybe this time we'll be willing to do what it takes to save people's lives without requiring them to cling to roofs and wave towels to get our attention in the first place."

Issues needing to be addressed

On behalf of the National Association of People With AIDS, Mr. Anderson also wrote to Health and Human Services secretary Mike Leavitt on Sept. 2, just after the storm hit, outlining immediate, midterm, and long-term issues "that will literally be life and death for people living with HIV/AIDS."

Treatment Interruptions. How will the emergency response ensure that people will have immediate access to the life-saving medications they need, he asked. How will this take place in the potential absence of medication or insurance documentation? Will people who leave their home state be able to access immediate health care benefits in the state where they seek refuge? What steps is HHS taking to prevent dangerous treatment interruptions? How is the government communicating clear and consistent guidance to health care providers and funders about how various federal funds can be used to support care and treatment for refugees from the impacted area?

Infectious Disease. Mr. Anderson said those living with HIV/AIDS are more vulnerable to a variety of infections and diseases because of the damaged state of their immune systems. Thus, he said, the post-hurricane environment holds special dangers for the spread of a variety of diseases, both in the areas directly hit by the hurricane and in facilities where people congregate for housing and services. "People with impaired immune systems will be exposed to a large variety of potentially dangerous pathogens in the post-hurricane and post-flood situation. The spread of diarrheal diseases, tuberculosis, influenza, and countless other bacterial, fungal, and viral infections will skyrocket in the post-hurricane period. What steps will HHS take to protect people, especially those with immune system suppression, from the spread of infectious diseases?"

Continuity of Care. How will HHS ensure that people are able to experience minimal disruption in their care and treatment? How will state eligibility for Medicaid, ADAP, and other programs be transferred to a new place of residence? How will HHS help people find appropriate and knowledgeable care and treatment providers in their new communities?

Support for the Care/Treatment Infrastructure in New Locations. Clinics and organizations in communities receiving evacuees are going to have their resources quickly strained beyond the breaking point. It is essential that they receive additional and immediate support to absorb the added work they are taking on. Also, state ADAP officials will need additional financial support to bring on the additional enrollees they will pay for.

Rebuilding Care/Treatment Infrastructure That Has Been Damaged or Destroyed. It will be essential that health clinics and AIDS service organizations be rebuilt as people are able to return to their home communities. How will HHS provide resources to ensure that the essential infrastructure is rebuilt in a timely manner?

Safe, Clean, Secure Housing. While other agencies of the U.S. government are primarily responsible for housing issues, NAPWA expressed the hope that housing services would be well coordinated with health services. "For people living with life-threatening diseases, housing is an essential part of good health," the group said. "Living in crowded, cramped housing conditions (including large group shelters) leaves people vulnerable to a range of infections and diseases. What will HHS be doing to ensure that the health of vulnerable people is protected by rapidly finding safe, clean, and secure housing?"

Prevention. NAPWA said documented experience around the world shows that large-scale displacement of populations can be a significant risk for a spreading HIV epidemic. The circumstances necessary for increased HIV transmission are present in the current situation, it says, as hundreds of thousands of evacuees are uprooted from their home communities and thrown into uncertainty and chaos. An effective public health response must address the need to prevent further infections during this challenging period.

Leadership. Mr. Anderson said that part of responding effectively to the needs of people living with HIV/AIDS during this public health emergency must be through strong coordination and leadership. "Without such leadership, there is a very real risk that the needs of people living with HIV/AIDS will be lost in the enormity of the crisis," he cautioned. He asked if the Department of Health and Human Services had designated a lead for HIV/AIDS issues in the context of Katrina, saying it is necessary that a high-level designee be given that responsibility.

No response

Contacted by State Health Watch, Mr. Anderson said he was disappointed that several weeks after he wrote what he considered to be a "timely and thoughtful letter," the federal government still had not responded.

[More information is available from www.hrsa.gov, www.nastad.org, www.napwa.org, and www.kff.org. Contact Mr. Penner at (202) 434-8099.]