Fighting the Stigma
By Gary Pettus
For some Mississippians, the only thing worse than dying from HIV/AIDS is admitting they have it.
It’s these people that Eric Bailey and others hope to reach as the state strives to curb the spread of the deadly disease.
“I decided to be an ally for them, because in Mississippi, we are so hell-bent on worrying about what people say or think about us,” said Bailey, 32, of Bolton.
“People aren’t telling others they are HIV-positive, because they are hiding behind the stigma.”
The stigma of HIV/AIDS is one culprit behind ominous statistics reported this year by the Centers for Disease Control and Prevention: With about a third of the country’s population, the South, including Mississippi, has half of the nation’s new HIV infections and the highest death rate from HIV.
The Jackson metro area is one of the country’s worst offenders, claiming the fourth-highest rate of new HIV infections among metro areas in the U.S., and the third-highest rate for people newly diagnosed with AIDS in 2010.
“That’s just shocking; it shouldn’t be that high,” said Dr. Deborah Konkle-Parker, director of UMMC’s Collaboration for Research in Communicable Diseases (CRIC), whose doctorate is in nursing.
Ranking new HIV cases per 100,000 people for 2010, the CDC reported that only Miami, Fla.; Baton Rouge, La.; and New Orleans have been hit harder. For people newly diagnosed with AIDS, only the Baton Rouge and Miami areas are saddled with higher rates than Jackson’s.
DISTURBING DEATH RATE
Nearly 10,000 Mississippians were living with HIV at the end of 2011, reports the Mississippi State Department of Health.
For people who currently have HIV, Mississippi has the highest death rate in the country: 32.9 per 1,000 individuals living with the disease.
“Most places besides Mississippi have managed to reduce HIV death rates,” Konkle-Parker said.
“This says something about lack of access to care, and about the willingness to be treated.”
Fewer than half of Mississippians with HIV receive treatment regularly, the Health Department reports.
“There is a strong stigma against HIV and homosexuality in Mississippi,” Konkle-Parker said. “So people lack the willingness to get tested, and to take medications, because someone might see them.”
This failure fosters the spread of the human immunodeficiency virus (HIV), which causes the illness that shackles the body’s disease-defense system: acquired immunodeficiency syndrome (AIDS).
There is no cure; untreated, it is deadly.
“We can’t kill it, but we can effectively stop it,” Konkle-Parker said. “When the virus is sufficiently suppressed, people are 96 percent less likely to transmit the disease.
“We have fantastic treatments out now that can completely control the disease, without having to take a lot of pills. And those without insurance can get them for free from the Health Department, as long as they go to a provider to get prescriptions.”
When Bailey was diagnosed almost 14 years ago, a wave of more effective anti-HIV drugs had arrived, but he didn’t know that then.
“When they told me I had HIV, the next thing I knew, I was waking up and doctors were standing over me,” he said.
“I didn’t know that much about HIV. But I knew I wanted to get something in my system to prolong my life.”
PRIDE AND PREJUDICE
Antiretroviral medications have suppressed the infection in Bailey’s body. He’s found it more difficult to suppress prejudice as he goes about helping patients find support services and urging others to get tested.
Many have asked him to help them break the news to their kin. Some are kicked out.
“I try not to make the parents feel too guilty about it,” Bailey said. “But I tell them, ‘At the end of the day, that is still your child.’"
Tracey Haymon faced the stigma in prison, where she was diagnosed in 1998. “The inmates with HIV were treated differently by the other inmates,” said Haymon, 43, now living at Grace House in Jackson, which houses people with HIV.
For Haymon, drugs have subdued the disease. And, like Bailey, she has enjoyed family support; others aren’t so lucky, she said.
“There was a lady in my hometown whose boyfriend died from complications from AIDS. But she was afraid to get tested, afraid to know, and scared of how people would treat her.
“I told her I’m glad I did find out and could get help. Because, without that medicine I’m taking, I would probably be with her boyfriend now.”
Haymon and Bailey are African Americans, the population harmed most by HIV.
Of the 550 new cases diagnosed in Mississippi in 2010, 78.5 percent were African Americans, although they represent only 37 percent of the population, said Dr. Leandro Mena, a UMMC associate professor and medical director of the Crossroads Clinic, the state’s largest publicly-funded STD/HIV clinic.
And where poverty goes, HIV often follows, Konkle-Parker said. Denial, lack of education and ignorance are other factors; in Mississippi, misconceptions abound.
“People may think they are not at risk for HIV because they are not gay, so they don’t get tested,” Mena said.
In Jackson, the disease is transmitted mainly through unprotected vaginal and anal sex, he said.
INROADS IN AIDS
There is some good news. At Mena’s clinic, more people than ever are getting tested – the number of visits rose from 20,000 to more than 30,000 per year over the past two years.
Most of all, the rate for infected babies has dropped over the last decade or so, said Dr. April Palmer, chief of the Division of Infectious Diseases in UMMC’s Department of Pediatrics, which follows about 60 to 70 women each year who were HIV-positive during pregnancy.
“I believe we are diagnosing almost every woman who has HIV,” Palmer said. “We are aggressive in following infants with testing.
“Getting these women into long-term care is still one of our biggest issues. But when it comes to transmission of HIV to infants, we’ve almost got that down to zero.”
HIV/AIDS DIAGNOSES IN JACKSON
Diagnosed in 2010: 184
Rate (per 100,000): 34
Living with HIV infection (end of 2009): 2,952
Diagnosed in 2010: 158
Rate (per 100,000): 29.2
Living with AIDS (end of 2009): 1,299
Source: Centers for Disease Control and Prevention