The South responds to its surging HIV epidemic
■ States employ tailored approaches in a region that accounts for half of new HIV diagnoses and 46% of new AIDS cases each year.
By Christine S. Moyer — Posted Dec. 3, 2012
Laurie Dill, MD, has HIV-positive patients who were forced to eat off paper plates because their families feared they would spread the disease. Some were kicked out of their homes when they disclosed their status. Others couldn't find rides to treatment because people feared infection by driving near the building.
The attitudes toward HIV/AIDS that she sees now in Alabama were what many physicians saw in the early days of the epidemic.
In many places, fears of contracting AIDS have lessened due to education about the disease and how it's transmitted. But in parts of the South, the stigma remains a serious problem. It prohibits people from getting tested, receiving timely medical care, and getting emotional and mental support.
“What we're seeing are young people who don't really understand they're at risk [of contracting HIV], being diagnosed with full-blown AIDS,” said Dr. Dill, an internist in Montgomery, Ala., and medical director of Medical AIDS Outreach of Alabama, a primary care facility that treats patients with HIV. “They have opportunistic infections and very compromised immune systems. They shouldn't be getting that sick.”
The South is in the grips of an epidemic, which few people paid attention to until recently, health professionals say. The release of new HIV data around the same time the International AIDS Conference took place in Washington in July helped raise awareness that the epidemic is shifting from cities, such as New York and San Francisco, to the rural South.
“People thought we had HIV/AIDS taken care of [in the United States],” Dr. Dill said. “But when they looked at the numbers, they saw that's not true.”
An estimated 1.2 million Americans 13 and older are living with HIV, and 20% do not know they are infected, says the Centers for Disease Control and Prevention.
Although the South is home to 37% of the nation's population, it accounts for half of new HIV diagnoses and 46% of new AIDS cases each year, said a July report by the Southern AIDS Coalition. The Alabama-based organization promotes HIV and sexually transmitted disease prevention, care, treatment and housing throughout the region.
Determined to slow the spread of disease, Southern health professionals and community members are implementing programs that target access barriers to health care, low education rates and the stigma of HIV/AIDS. Each of those factors contributes to the epidemic, medical experts say.
Complicating matters is the fact that the South has some of the nation's highest rates of obesity, poverty, STDs and unemployment. The region also remains deeply conservative and religious, which can create barriers to educating the public about safe sexual practices and tolerance for people with HIV/AIDS, health professionals say.
“All of these issues coalesce to create this environment that is very conducive to increased transmission” of the disease, said James Raper, DSN, director of the 1917 Clinic at the University of Alabama in Birmingham. The clinic treats patients with HIV/AIDS.
People involved with the innovative programs acknowledge these challenges, but they hope they can make a difference and be part of the solution in the South.
“It is very easy for people to see problems,” said Will Rutland, director of access to care for Medical AIDS Outreach of Alabama. “But what is truly exciting is people who see solutions.”
Reducing the stigma in Florida
Marlene LaLota, MPH, of the Florida Dept. of Health is one of the people working toward a solution. She has helped develop and implement programs to increase HIV/AIDS testing, link more infected people to medical care and reduce stigma around the disease. Through these efforts, the health department is encouraging people to talk about the illness.
“That's the only way we can make it normal,” said LaLota, HIV prevention director at the Dept. of Health.
Florida is among the states most heavily impacted by HIV/AIDS. In 2010, the state had the nation's highest rate of new HIV diagnoses — 33 cases per 100,000 population, the CDC said. That is nearly twice the national rate of 17.4 new cases per 100,000.
Florida also has the country's fifth-highest rate of new AIDS diagnoses, 19.7 cases per 100,000 population, and the most AIDS-related deaths (2,621), according to 2010 data from the Kaiser Family Foundation.
The high mortality rate is particularly concerning, because it indicates that many people do not discover their HIV status until they are too sick to benefit from available treatments, according to the Southern AIDS Coalition report.
Contributing to the problem in Florida is the large prevalence of men who have sex with other men, particularly in Broward and Miami-Dade counties, LaLota said.
Nationally, gay and bisexual men are the population most affected by HIV, according to the CDC. For instance, although men who have sex with other men represent 2% of the U.S. population, they accounted for 61% of new HIV infections in 2009, the CDC said.
In Florida, the incidence of HIV in that population continues to increase, LaLota said.
Another key factor working against solutions to the HIV/AIDS problem is stigma, she said.
“There is a lot of stigma here in the South around HIV and around certain behaviors” linked to the disease, including sex and particularly sex between men, LaLota said. “There often are taboos around those behaviors, so they're not often discussed.”
To shatter that stigma, the Florida Dept. of Health started the Faces of HIV project, which was launched on Dec. 1, 2011, and started touring the state in January. The mobile art exhibit travels through the state, displays portraits of Florida residents with HIV/AIDS and includes journal excerpts from some subjects. Video interviews with participants about how they became infected and how the disease affects their lives are played. The exhibit is displayed in settings such as outdoor art markets, malls and universities.
Among the people featured are a health care worker who was infected on the job and a woman who contracted the disease from her husband.
“We're showing people that just because you have HIV doesn't mean you're dirty, do drugs or are gay,” LaLota said. “It means that you have an infection and you deserve care and compassion just like someone with cancer and diabetes.”
Telemedicine to improve care
In Alabama, where there are only five credentialed HIV medicine physicians, patients with HIV/AIDS commonly travel more than an hour to reach a treatment center. Patients without transportation often forgo care because there is no public transit in the rural areas.
That is troublesome, medical experts say, because CDC data show regular health care is essential to suppress a patient's viral load. Suppressing viral load improves one's health and dramatically decreases the risk of transmitting the virus.
To address the problem, staff at Medical AIDS Outreach of Alabama used to drive 50 miles once a week from Montgomery to Selma to treat HIV patients. The care team of a doctor, phlebotomist and nurse hauled with them diagnostic medical equipment, medication and patients' paper health files.
In 2012, the organization began using telemedicine as a more efficient way to reach patients with HIV/AIDS who live in some of the state's poorest, most rural communities.
With some funding from Washington-based AIDS United, the Alabama organization bought a Bluetooth stethoscope and digital dermascope. The tools enable doctors to examine virtually a patient's heart, lung and abdominal sounds as well as any flushed skin, lesions and thrush. That diagnostic information is important in determining an appropriate course of treatment, said Vignetta Charles, PhD, senior vice president of AIDS United, which works to end the AIDS epidemic through policy, grantmaking and organizational capacity building.
There are several remote sites in Alabama where patients with HIV/AIDS can meet virtually with their physicians, Dr. Dill said. “It is a one-to-one, real-time interaction that feels like you're sitting in the room with the doctor,” she said.
A pharmacist also is available once a week through telemedicine to discuss with patients their adherence to prescribed medications.
The project is believed to be the first telemedicine program used exclusively for HIV/AIDS, and it has been well received by patients and physicians, Rutland said. The goal is to add more telemedicine sites and expand the program to include virtual mental health care for HIV patients. But funding is still needed.
“We're trying to convince folks this is worth getting behind,” Rutland said. “But here HIV is not at the top of everyone's list to give money to for a number of unfortunate, stigma-related reasons.”
The organization's fundraising efforts have included hosting bake sales and participating in triathlons.
“I think we're making strides, but it's a dire situation,” Rutland said. “If the country doesn't turn its attention to the South, we're going to have a major issue on our hands.”
Stylists work to prevent AIDS
About 90 miles north in Birmingham, Ala., a different approach to fighting the epidemic is under way. There, cosmetology students, the majority of whom are black, learn basic information about the disease, the stigma around it and prevention methods. The lessons are part of Beauty in Knowing, a five-session program that launched in 2010 with the help of funding from AIDS United and other organizations.
The purpose of the initiative is for stylists to learn information that will help them modify female clients' risky behaviors and educate them on ways to prevent HIV/AIDS, said Dafina Ward, director of community partnership and special initiatives at AIDS Alabama. The organization aims to prevent the spread of HIV and help those with the illness live healthy, independent lives. A psychologist from Georgia helped shape the program.
“They're learning what it means to be a stylist, and we're adding a health information piece,” Ward said.
Black women in Alabama have been targeted because they are disproportionately affected by HIV/AIDS. Among females, black women represented 74% of the HIV/AIDS cases reported in 2007 in Alabama, said the Alabama Dept. of Public Health.
A similar trend can be seen nationally. In 2009, the estimated rate of new HIV infections for black women was more than 15 times higher than for white women, the CDC said.
Beauty in Knowing is centered on salons because they are places where women can talk freely about sexual relationships, and many women have a strong level of trust in their stylists, Ward said.
“We were hearing that a lot of women come to the salon every week to get their hair done, but they rarely, if ever, see a doctor,” she said. “This seems like the perfect opportunity” to talk to women about HIV/AIDS.
The program encourages cosmetology students to decide how to address the disease with clients. Suggestions include offering condoms, hanging posters that identify testing locations for HIV/AIDS and speaking directly about the illness.
A Louisiana effort targets misconceptions
Reducing the stigma that surrounds the disease is among the goals of Monica Johnson, who lives in the small northeastern Louisiana town of Columbia. She sometimes hears young people say they can look at people and tell if they have HIV/AIDS.
“You can't look at people and tell,” she says to them. “HIV does not look like what you think.”
Johnson, a healthy- and vibrant-looking woman, has HIV. After struggling in the early 1990s to get to a support group located hours away, she formed a nonprofit organization for people in her corner of the state who have HIV/AIDS. Louisiana has one of the nation's highest rates of new HIV infections — 28.8 cases per 100,000 population.
Johnson's organization is called HEROES — Helping Everyone Receive Ongoing Effective Support. With the assistance of volunteer physicians and nurses, Johnson has set out to educate infected community members about HIV/AIDS and tell them how to take care of themselves. Each year, she coordinates a statewide retreat to help those with the disease build meaningful friendships and learn techniques to better manage the stress in their lives.
Johnson and her team talk with teenagers about risky behaviors that make them more susceptible to contracting HIV/AIDS, becoming pregnant or developing other health issues. They also visit the community, mostly going to churches, where they offer basic information, dispel myths and try to create a tolerant environment for those who are infected.
“It took me up until four or five years ago to get people to understand” that HIV is transmitted by people, Johnson said. “They thought they could get infected by mosquitoes.”
Kathie Hiers, CEO of AIDS Alabama, is pleased to see such programs springing up across the South. But she warns that more is needed to solve the problem.
“It's going to take a lot of different tools to get to the end of the AIDS epidemic,” Hiers said. “Until we move from [viewing HIV/AIDS as a] moral issue to a medical one, we're going to continue to have challenges.”