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Saturday, December 3, 2011

Homeless and HIV-positive

Crystal, 46, lives on the streets of Atlanta, and wants to stop using drugs.More than 40,000 people in Georgia have HIV or AIDSAtlanta has high rates of poverty, sex trafficking and food insecurityFor some, finding a place to sleep can be a bigger priority than HIV treatmentEditor's note: This week, CNN Health's team is taking a close look at the HIV/AIDS epidemic in the Southeast with a series leading up to World AIDS Day on December 1. Learn more about the problem and our upcoming stories here.

Atlanta (CNN) -- Her blue-green eyes are as clear as her name would suggest, but her wants and needs are muddy as she walks with aching joints on the streets of Atlanta, trying to resist the urge to get high.

Like many people living with HIV/AIDS in downtown Atlanta, she's less concerned with her disease than about where she's going to sleep, what she's going to eat and how she's going to stay clean. It's been a few days since she's had cocaine or alcohol, and she wants to keep that up. But when you're living on the streets, surrounded by dealers and users, it's hard to say no to a source of good feelings you've known for decades.

"What am I gonna do if I don't use? Who am I gonna be, if I'm not gonna be an addict?" Crystal, 46, asks one crisp day in October, her icy hands hoping to find gloves later. "I've been an addict all my life, which just leaves you with a lot of empty time, a lot of space in your life; that seems like a dangerous thing to me. People get in trouble when they don't know what to do, or where to go."

Crystal -- CNN is not using her last name -- is stuck in a cycle of addiction, drugs, homelessness and disease. She got HIV by selling sex to buy more drugs, a risk factor that isn't the only predominant way of contracting the virus, but something Dr. Wendy Armstrong sees commonly at Grady Health Care System's Ponce De Leon Center, one of the largest HIV/AIDS treatment facilities in the United States.

More than 40,000 people in Georgia have HIV or AIDS; 67% of them live in the 28-county metropolitan area that includes Atlanta, according to a 2010 report by the Georgia Department of Community Health's HIV/AIDS Epidemiology Unit. The epidemic is concentrated in Fulton County, which includes the city's downtown, as well as DeKalb, Gwinnett and Clayton counties, said Paula Frew, a researcher at Emory University School of Medicine.

Male-to-male sexual contact is the most common mode of transmission among men, but for women living with the disease in the metro area, some 27% are "high-risk heterosexual," meaning they've had sexual contact with someone with known risk for HIV.

High rates of poverty, sex trafficking, food insecurity and continued stigma attached to the disease all help make Atlanta a center of the Southeast epidemic. And it feeds on itself: When there's already a high prevalence of HIV, the chance that any single sexual encounter will lead to transmission of the virus is greater.

"We see a whole lot of homeless people at our clinic. It's very, very, very common that patients are unstably housed," said Armstrong, an associate professor of infectious disease at Emory University School of Medicine, and an investigator at the Emory Center for AIDS Research.

But because Crystal doesn't have noticeable symptoms from her disease, she, like many others with HIV in the United States, doesn't see that as her priority. Her story highlights how addiction can lead to a path of risky behaviors that feed on one another, and can result in a chronic life-threatening illness that affects more than 1.1 million people in the United States.

Making sense of a diagnosis

Crystal was once going to visit the Ponce clinic but missed her scheduled time, and says she can't get another appointment.

Staff can see only patients whose CD4 count (a measure of white blood cells available to fight infection) has ever dipped below 200; in other words, those who have full-blown AIDS, Armstrong said. To Crystal's knowledge, she has not reached that point. The clinic is currently seeing 5,100 patients already, Jacqueline Muther, interim administrator at the Grady Infectious Disease program says.

Crystal also met with a counselor from a different AIDS organization but was put off when given a list of shelters to call herself.

"Sometimes, people have tried to help her, and she wants it on her terms only," said a close friend who has known Crystal for more than three years but did not want to be identified in this article. "You can't really do it that way."

Desperate for drug money, Crystal used to sell sex to support her addiction. She thinks she got HIV from a man who offered her money and told her he was HIV-positive. And she didn't care.

"The addiction takes over your mind and your thinking and perpetuates itself," she said. "The money he was giving me was more powerful than the consideration of the chance that I would become HIV-positive. That's the mind of the addict."

Crystal got her first diagnosis while in jail about two years ago. Her recollections of why she was arrested at various times are fuzzy, but Fulton County has a record of her charged with possession of cocaine in November 2009. Crystal says she does remember that the nurse who delivered her HIV diagnosis results smiled, as if she were taking perverse pleasure in it. Crystal didn't react.

"Did you hear me? You're positive," the nurse said. Crystal began to cry.

iReporters share their stories on World AIDS Day

She went with her close friend to get confirmation at the health department in January 2010. Crystal was initially upset to learn that the result was positive, but her friend reassured her that people can live a long time with HIV. After learning about the disease more, she felt better about dealing with it.

"The way I was living my life, I was living to die anyway. I was very promiscuous. I was buying drugs on the street when you have no idea what's in them. Now I'm much more careful," she said in August 2011. But by November, her attitude had become more one of denial -- she insists that she's not sick; she feels the pain of arthritis in her joints, but no symptoms she relates directly to HIV.

"Someone else says there's a virus in my blood," she says, her Southern twang broadening when she speaks passionately.

" 'Positive' is being happy and open-minded and open to things happening in my life. 'Positive' is continuing to go forward and do the right thing. Do the next good thing, continue to live, that's what being positive is to me."

The majority of patients at Atlanta's Grady Memorial Hospital who get a diagnosis of HIV as an inpatient progress to AIDS within one year because they are tested so late in the course of the disease, Armstrong said. More than half already have AIDS, she said. Generally, how fast that progression from HIV to AIDS occurs varies from person to person.

According to Armstrong, current recommendations suggest that everyone with a count of CD4 cells (an important part of the immune system) below 500 should get treatment; below 200 means the person has AIDS. But that's not the whole story of how HIV harms the body; just having a chronic disease with viral implications increases the risk of cardiovascular disease and bone disease, Armstrong said.

A very small number of people with the disease are "elite controllers," who appear to control the virus because of special properties in their immune system, and may have lived several decades without progressing to AIDS, taking no HIV medications. But they represent only about 3% of people with HIV according to the International HIV Controllers Study.

Crystal does not have full-blown AIDS, according her and her close friend, and does not know her CD4 count.

"I'm not living in this diagnosis," she said in early November, while staying with a friend downtown. "I'm not going to let this control my life, make my choices for me, make my decisions."

Her close friend, who describes Crystal as "bright and very attractive," desperately wants to get Crystal off drugs and off the streets permanently, and is trying to help her.

"We have to love people where they are, even if they can never get into recovery. The fact that she's not successful won't stop me from loving her and just hugging her and helping her," the close friend said.

A past in broken fragments

Jail in autumn 2009 gave Crystal a diagnosis. Jail in October 2011 gave her 10 days to think about her 8-year-old daughter, whom she hasn't seen since the girl was 3 months old. During the incarceration, she slept well and ate well, and she returned to the streets with renewed optimism.

"I want one day to be someone that I would let my daughter see," she said. "I'd like to be someone that my family would claim. My mother would say, 'Yes, that's my daughter.' My sister might say, 'Yes, that's my sister.' "

Her memory is imperfect. There are periods of her life that she believes are still in her brain somewhere, but that her memory can't access. "It's all there," she says, "like on a tape recorder. I just don't have access to all of it." Head injuries, alcohol and drugs have all clouded some of her thinking about the past.

Growing up in Jacksonville, Florida, Crystal began smoking marijuana at age 15; it gave her the immediate gratification she was looking for. She would smoke pot every day and drink on the weekends. Drugs, she believed, were the "in thing."

"It made me feel good," she said. "As a child, I didn't grow up learning how to feel good about myself."

From beer keg parties, she moved on to heavier drugs: acid, powdered cocaine, speed. She could get a gram of powdered cocaine for $50 and supported her addiction by working.

Cocaine, both powdered and crack, is an independent risk factor for HIV transmission because of the associated behaviors and social disorganization that it creates, said Dr. Vincent Marconi, associate professor in the division of infectious diseases at Emory University School of Medicine.

Crystal's mother was a busy woman, in Crystal's memory. She was a high school graduate but did not attend college, and worked extensively in accounting, Crystal's remembers. She said her father worked in the printing business, and also bought a tavern and worked graveyard shifts, sleeping in the day and working in the evening.

"We went without nothing. We built a pool in the backyard. We had things, dogs, clothes. I had everything I needed," Crystal said.

She says she graduated from high school in 1983. There is a record of her being arrested in Florida for possession of marijuana in April 1985.

But Crystal has barely any memory of 1983, '84 and '85, the years leading up to a major car wreck.

"When I woke up in the hospital, I was a child again inside my head and I had to grow up again," she said. "I would do something and realize: This is a mistake."

She moved to Atlanta about three months before the accident. She learned that, one week before, she'd brought her car -- a 1975 Ford Capri, an ugly orange "bubble" hatchback with stick shift -- from Florida. Driving on Interstate 75 close to Windy Hill Road, where her mother's office was, she was in an accident with a truck on September 10, 1985.

Left with a severe head injury, Crystal spent three months in the hospital, including six weeks in a coma. She said her jaw was broken for nine years, and it took 10 years for the reconstructive surgery that would repair her face. She had bone graft surgery three times.

She tried to hold various jobs -- she was a cashier and an ice cream truck driver, among other things -- but never developed concrete skills. And she moved around the Atlanta area -- Midtown, Chamblee, Roswell Road.

Into the early 2000s, she continued using drugs and was arrested several times on drug-related charges in the Atlanta area. She had been on and off the streets when she found out that she was pregnant. The child's father was from Mexico, she said; Crystal isn't sure if he's still in the country.

She moved in with her mother in Gwinnett County. At that time, she stopped using crack but still drank a little, occasionally. But she also failed to report for to DeKalb County court when required and was jailed overnight while about seven months pregnant.

She went into labor on her own birthday in 2002 and gave birth the next day.

What happened next, Crystal doesn't want to talk about. She was still making "bad choices" and had an "altercation" with her mother, resulting in her mother taking legal action against her. Her mother mentioned the 1985 car accident in the petition, stating that the head injury, combined with substance abuse, has given Crystal problems with judgment and memory. She also wrote that while on alcohol or drugs, Crystal can get violent and abusive.

In July 2002, the Gwinnett County Superior Court gave her mother temporary custody over Crystal's infant daughter. The court also issued a six-month protective order barring Crystal from approaching her mother within 100 yards or having any contact.

"My mother doesn't want anything to do with me. She doesn't claim me," Crystal says, tears spilling over from her eyes. "That's my mother!"

Crystal would spend much of the next year in confinement. In August 2002, the State Court of Gwinnett County ordered her to serve six months at the Gwinnett County Correctional Institute, minus the approximate month she'd already served. But because of a probation violation in DeKalb County, she would then spend October 2002 to May 2003 in jail there.

A handwritten letter with loopy "f"s and "g"s, which she wrote from jail in DeKalb County, remains in her file in Gwinnett County. Crystal writes, "I am going nuts worrying about my baby and am doing all I know to do." She wrote that she had tried to inquire about the welfare of her daughter, but hadn't heard anything from the Division of Family and Children Services in Gwinnett and DeKalb.

"I stopped smoking 'crack' because I wanted this baby more than I wanted a 'hit,'" she wrote. "I believe I have changed my life."

As far as she knows, her mother is still taking care of her daughter.

"Until I can be the mother she deserves, I'm not going to be in and out of her life. I see that a lot on the streets: mothers having more children to get bigger checks," Crystal says. "I love my daughter. I loved her enough to walk away. God willing, we will be restored. I pray constantly that she will have no hard feelings."

She left jail in 2003 without a permanent place to live.

On the streets

They think they know me, but they only know what they see out on the streets. This is a role. Everybody's playing a role.

Crystal has tried a few shelters, but she didn't like all the rules that went along with staying at them: She doesn't want to have to talk to a counselor. She doesn't like having a bedtime and getting in line for food. One shelter wouldn't let her keep her possessions underneath her bed. Another dismissed her because, according to Crystal, a woman said she snored too loudly.

All the while, she's had HIV in her body for about two years, at least, and said she hasn't felt sick as a result.

"If they're feeling somewhat OK -- they might be a little bit sick -- they don't look at the long-term plan in their life," Marconi said of people living with HIV/AIDS in situations like Crystal's. "They might be focused on, 'What do I need to do to eat today? What do I need to do to get access to drugs today?' "

Sometimes, an unstable housing situation prevents people from getting HIV medications because some drugs need to be refrigerated, and "you don't want to start them on HIV meds if they're going to take them incorrectly," said Lane Tatman, a triage nurse at the Ponce De Leon Center.

Crystal's hideaway used to be under a bridge behind the building that used to house the Atlanta Journal-Constitution newspaper, by the CSX train tracks. She lived there with her friend Frank, who used to drink constantly and panhandle in front of the AJC. Crystal hasn't seen him in a while, because a church group took him to a program where he stopped drinking.

Despite her generally upbeat attitude, life on the streets has not treated her well. Besides numerous arrests, Crystal said she has been physically and sexually assaulted multiple times.

"Every day I see the scars on my body. I totaled three cars. A guy cut my throat once," Crystal said.

"I wouldn't have been in those places if I hadn't been out trying to hustle some money or some dope."

Barbara Heath, a specialist at Recovery Consultants of Atlanta who first met Crystal about two years ago, remembers her showing up at the county health department bleeding with two black eyes; she had been "beaten to a pulp."

"She's very willful and stubborn. She'll get into arguments with people," a close friend of Crystal's said. "That's how I think she gets beat up a lot. She's very combative."

That stubbornness prevents her from accepting the help that many people close to her want to offer.

Heath had tried to get her into a recovery program, which would require a weeklong detox and work with a treatment team. The paperwork was all filled out when Crystal backed out.

"I don't know what else it would take. The only thing I can do is just be here when she calls. Just be a friend or someone she can talk to," Heath said.

Toward recovery

Crystal has a few personal mottoes that she'll often repeat during a conversation. One of them is: "Bad choices lead to more bad choices." Another is: "If you don't want a haircut, don't hang out in the barbershop."

Eight years ago, few people would sell anything smaller than a $10 rock of cocaine, the size of a small pebble. Some addicts cut that in half. Today, there are dealers who sell $1 hits -- it's "not enough to make you crazy, but gosh, I could have bought a cup of coffee with that dollar," Crystal said.

"Drug addicts make choices that are irrational. I like to get high. You forget, or it doesn't matter. I know what's going to happen when I start using drugs: You make bad choices, you make tradeoffs, you spend money that you don't really have to spend just to get that euphoria."

One event that gives Crystal's day structure is a recovery meeting in the basement of the Catholic Shrine of the Immaculate Conception, where she's been going several times a week. She's been going to groups like this through Church of the Common Ground, a spiritual organization for homeless people, for years.

The format uses the framework of Alcoholics Anonymous -- reading the 12 steps, introducing yourself when you speak, having a sponsor. Some meetings are called "Double Trouble," dealing with addiction in addition to other mental illnesses.

A year ago, Crystal spoke about using alcohol and drugs when she feels bored, since there's nothing positive or healthy to do, recalls Darrell Stapleton, who has attended the Double Trouble meeting several times. Stapleton connected with that instantly -- he had been doing the same thing.

At a recent meeting, Stapleton -- dressed in a pressed white shirt and jeans, and now living in Stone Mountain -- celebrated one year of being clean. Crystal and dozens of others in recovery applauded as he stood up to accept a white poker chip symbolizing his sobriety.

Stapleton pocketed his chip, but usually someone with a record of being clean for a year or more will pass the token on to someone who's just starting out.

"I would say that he should have given it to Crystal," says Gail Herrschaft, a recovering drug addict who's been clean for 15 years. She is the director of Double Trouble In Recovery, and led the meeting that day.

Herrschaft and Crystal share a keen understanding of drug addiction.

"You'll prostitute. You'll do anything. Rob, steal, anything," Herrschaft says.

"Lie, cheat," Crystal adds.

"Lie, cheat, exactly," Herrschaft echoes. "Anything to get dope. It's like, it's a driving force. I've got to get another one. Gotta get another one. Once you start, it's like, 'OK, I'll do one and then I'll go pay my bills.' Well, that doesn't happen. The next morning, you wake up and you say --"

"'What have I done?' " Crystal finishes.

"'I don't have any food for the kids, I can't pay the rent,'" Herrschaft adds. "It's a vicious cycle. And that's when you start doing things that you said you'd never do."

From shooting dope with dirty needles, Herrschaft contracted HIV 19 years ago. After finding out her diagnosis, she smoked and drank in Georgia and four surrounding states because she thought she was going to die.

"I was like, let me just get super high and just tear everything up and --"

"Go out with a bang," Crystal finishes.

Herrschaft turned her life around after an intervention from her children. She also learned that she had hepatitis C, and stopped drinking. Today, she's in good health and sees her doctors regularly.

Crystal later said she had asked her own mother and sister to go to codependency meetings for families to see how they could help her, but they weren't interested.

The last time she spoke to them by phone, they were still angry.

CNN could not reach them for comment.

Survival mode

She walks with her left shoulder higher than the right, her hips and knees and other joints aching with arthritis. But she doesn't hesitate to bend over and pick up a stray resealable plastic bag, swiftly depositing it in the black garbage bag she's clutching. For her, nothing is trash.

She eats at various food lines. She used to sit at Woodruff Park all day long, but police have cracked down on that. But she'll still pick up a book at the outdoor reading room, or go to the library down the street. Her tastes are varied: historical romance, nonfiction, James Patterson, Patricia Cornwell. In August, she checked out "Dead Reckoning," the 11th book in the Sookie Stackhouse series.

Or she'll read her Bible in her "cat hole," a place where she stashes her stuff so no one takes it. Other homeless people have gone through her things and stolen them. But she shrugs it off; she's thin and 5-foot-8, so it's easy to find clothes at church giveaways.

On the street, it's hard to say who's really a friend.

"They think they know me, but they only know what they see out on the streets. This is a role. Everybody's playing a role," Crystal says. "This is not who I am. This is not who I grew up to be. This is Crystal on the streets. Crystal in survival mode."

She speaks of a man who can drink three six-packs of beer in a day, and will swing at her when he doesn't have alcohol. The rational choice is to walk away and sleep alone, Crystal says.

But options become scarce as Atlanta's leaves turn from green to red and then fall off with the coming of winter. These days, she's staying with a friend downtown, she says, when it's raining and she can't stay on the street. And despite her dedication to the recovery meetings, she said recently that's she's not finding recovery there.

"I don't know that I need treatment. I just need to act on the knowledge that I have. But if I sleep outside and I'm cold and I'm miserable and I'm dirty in the morning, if you don't got nothing, you don't got nothing to lose," she said.

Besides reuniting with her daughter one day, Crystal hopes that people will learn from her story through this article, and not go down the same path of addiction. She has been public about her diagnosis at church, and doesn't want anyone else to have to live through hearing the words "you're HIV-positive."

"If I can use my bad experiences to prevent someone else from bad experiences, maybe it wasn't such a bad lesson for me to learn," she said.

Pastor fights stigma in rural town

Diana Martinez made small talk as Tommy Terry shifted uncomfortably in his seat. The man sitting next to Martinez cracked a joke. Nobody laughed.

A clock on the back wall ticked minutes away in a mocking cliché.

Only three people had shown up for this month's HIV/AIDS awareness meeting. Usually, there are 10 to 12 -- a surprisingly good turnout for a congregation of 25, which just goes to show how many people the disease affects in this small Southern town.

It's a problem all across the Bible Belt. In 2007 -- the most recent data available from the Centers for Disease Control and Prevention -- the rate of diagnosed AIDS cases in the Southeastern United States was much higher than in other regions of the country: 9.2 per 100,000 people, versus 2.5 in the Midwest, 3.9 in the West and 5.6 in the Northeast.

Rural areas like this have it particularly bad. The CDC reports that while HIV diagnoses have slowly decreased in metropolitan areas since 1985, rural areas are still showing an increase because of stigma, poor education and a lack of funding.

Standing at the front of the Bibleway Holiness Church, Pastor Brenda Byrth kept a close eye on the door. She had hoped she'd made enough progress that her group would feel comfortable opening up about their experiences.

Another woman slid silently into a pew in the back, the fourth and last member to arrive.

A reporter was in town, and the rest had a secret to keep.


If Byrth was being honest, she would tell you that she really doesn't want to be where she is. A big-city soul, she has trouble explaining why she lives in Dorchester, South Carolina, population 2,593.

"I'm pretty sure you can't get more rural than this."

I said if things can't change, then I need to leave, because I can't live like this.
Pastor Brenda Byrth

Her mom is the reason she's here. Byrth spent part of her childhood in Dorchester before leaving to go to college. She wasn't planning on coming back. She eventually moved to Europe with her husband, Carl, and their five girls. But when her father died of lung cancer and her mother, Marie, had a stroke, Byrth returned to South Carolina in 2000 to take care of her.

At the time, Marie was the pastor of Bibleway Holiness Church. Marie told her daughter that she would have to take over -- to continue the work Marie had started. Byrth said no.

"I said, 'I'd give my life for you, but I can't do that,' " she remembers. "I saw how my mom had run herself into the ground. I didn't want to do that. I wanted to go on a cruise, take a vacation. Mom just said, 'You'll do it.' Turns out, she was right."

The way Byrth tells the story, it all started with a red clay road. If you know anything about red clay, you know it gets muddy fast. So when Dorchester's Marion Road got rained on, it literally washed away. That meant no school for the kids, no church services, no vehicles in or out.

That was a problem when an elderly resident died, and the ambulance couldn't reach him for three days because a thunderstorm had flooded the area.

"Some of the men in our community rolled up their pants legs, got the stretcher and went and got him, and brought him out to the end of the road."

Byrth was outraged.

She attended county council meetings every month for two years before the council finally agreed to pay to put asphalt on the road. Then she started hearing about other parishioners who were too old or sick to leave their houses. She began delivering food and clothing to people in a 40-mile radius of the church.

"My mom always said: Just standing around and looking doesn't help the problem, you've got to get involved," Byrth says with a sigh and a glance to the heavens. "Even when it's someone else's problem, it's your community, and you're a part of that community."

It was during a visit to the "sick and shut-in" that Byrth had her first encounter with AIDS in Dorchester.

It was 2009. A couple had moved to town, and Byrth heard through the grapevine that the husband was ill.

When she got to the house, the middle-aged man was lying on excrement-soiled sheets, struggling to take shallow breaths.

His wife had packed up and left.

If this were a movie, Byrth would have made the visit earlier. The man would have lived -- bolstered by antiretroviral drugs and a caring hospital staff.

Instead, his death was simply another symbol of the fear surrounding HIV/AIDS in rural South Carolina.

"I said if things can't change, then I need to leave, because I can't live like this."

Byrth stayed in Dorchester.


The stigma starts with sex, says Dr. Leandro A. Mena, an expert on infectious diseases at the University of Mississippi Medical Center.

Many socially conservative residents of the Deep South have a hard time talking about sex with their children, never mind discussions about condoms with complete strangers.

How prevalent is HIV/AIDS in your county? Take a look at our interactive map

"That's one of the first barriers to really having an open discussion about how HIV is transmitted," Mena says.

The second barrier is religion. Some in the South believe they could go to hell because of their actions, he says, be they drug use, premarital sex or homosexuality.

"Imagine the challenge that this may present in terms of HIV prevention. How can you persuade someone -- who believes that no matter what you do, in the end you're going to hell -- that you have to do something to protect yourself?"

Tommy Terry has a love/hate relationship with religion and the pastors who preach it in Dorchester County. A faithful man, he attends Byrth's HIV/AIDS meetings as a tribute to his partner, Michael, who died in 2005.

The couple spent 10 years together. Terry could do nothing as he watched Michael fade away, losing weight and friends at an equal rate.

Sitting on the concrete porch outside the Bibleway Holiness Church, Terry struggles to keep tears from falling as he talks about the last few months of Michael's life. Terry called pastors from around the county to come pray at Michael's side in the hospital. They all refused.

This disease does not care who you are, where you are from, how much money you make. It does not discriminate.
Carl Byrth

"When somebody has AIDS, they just walk away from you," Terry says in his gentle drawl. "They don't want nothing to do with you."

Byrth's husband, Carl, used to be one of those people. He believed that if you were in "the lifestyle," you deserved what came. But working closely with Terry and others affected by HIV/AIDS has changed his perspective.

"These are just people -- they went down a different way, but they're not bad," Carl says. "This disease does not care who you are, where you are from, how much money you make. It does not discriminate."

iReport: Have you been affected by AIDS? Tell us your story

It's a fine line for Byrth, who avoids preaching outright to those she helps but won't shy away from provocative Scripture in the pulpit. She disagrees with the lifestyle, she says, not the person.

"Religion has its place, but when people need help, they need help," Byrth says. "The first thing that I tell them is Jesus loves you. That's the Gospel. At this point, they need to know somebody loves them, somebody cares. And the second thing Jesus said? 'Come as you are.' "


A silver cross swings from the rearview mirror as Byrth pulls into a gravel driveway. She drives hundreds of miles a week, shuttling HIV patients to doctors' offices. There are experts in Charleston, but most of her neighbors want to travel the extra 30 miles to Columbia, a bigger city where there's less chance of running into people they know.

After the appointments, she listens to them claim they have everything from cancer to a bad case of the flu.

"They say, 'Oh, the doctor doesn't know what he has.' They know, and the doctor knows," Byrth says, shaking her head. "They keep it to themselves, and they don't take care of themselves. [By the time] it gets bad and they go to the hospital, you can't reverse it."

Lack of treatment is one of the biggest reasons the rural South has such a prevalence of HIV/AIDS, says Dr. Bill Yarber, senior director at the Rural Center for AIDS/STD Prevention.

Rural residents face special challenges in getting the proper care. Even if there is a doctor close to home, he or she usually isn't a specialist in infectious diseases. A mistrust of modern medicine also adds to patients' fears, Yarber says.

In many Southern states, economic conditions make affording treatment difficult. HIV antiretroviral drugs cost $800 to $900 a month, and there's a waiting list for AIDS Drug Assistance Programs.

Back at the Bibleway Holiness Church, Byrth lays out pamphlets by the door. Not everyone will feel comfortable talking to her, so she wants the information available to slip into a handbag or back pocket.

Once in awhile, she has a visitor from another congregation who whispers as he walks out: "Please don't tell my pastor."

Parishioners have left her church since Byrth began pushing for a more open attitude about HIV/AIDS.

"A lot of the folks here are what they call 'RTC' -- resistant to change," Carl says. "[But] you're not going to end a disease like that by keeping it hush-hush and sweeping it under the rug. Because the more you try to hide it, the bigger the pile gets."

The couple recently bought another property that they're renovating in nearby Summerville, South Carolina. They plan to call it the Angel House but keep it listed as personal property.

"We're not saying 'This is an AIDS house,' " Byrth says. "We just couldn't do that."

Angel House will be a temporary refuge for people who have fled from their families after being diagnosed and veterans who don't have a home.

"I think that's the biggest thing and the greatest thing anyone can do -- stick by somebody in their time of need," Byrth says. "Because when you become isolated and you don't have anybody, I think you tend to go downhill faster than if you had the support, the love, the encouragement there.

"It might be a bad situation, but you won't do it alone."

Restless sleep? Maybe you're lonely

"It's the space between what you want and what you have that can turn into loneliness," Lianne Kurina said.People who feel lonely tend to experience more nighttime restlessnessThe amount of loneliness depends on how people perceive their social situationBegin to rebuild social connections in an emotionally safe way

(Health.com) -- Feeling isolated and disconnected from the people around you may keep you from getting a good night's sleep, even if you're not aware of it, a small new study suggests.

People who feel lonely tend to experience more nighttime restlessness and disruptions than their better-adjusted peers, the study found, which may partly explain why loneliness has been associated with health problems such as high blood pressure, heart disease, and depression, says lead researcher Lianne Kurina, Ph.D., an assistant professor of epidemiology at the University of Chicago.

"In lab experiments, when people are intentionally woken up repeatedly, it seems to have effects on [their] metabolism," she says. "Their insulin sensitivity goes down, almost suggesting that poor sleep could put them at higher risk of type 2 diabetes, for example."

Health.com: 7 tips for the best sleep ever

In the new study, published today in the journal Sleep, the link between loneliness and sleep disruptions persisted even after the researchers took into account marital status and family size. This finding underscores an important distinction between loneliness and social isolation, Kurina says: The amount of loneliness people feel ultimately depends on how they perceive their social situation, not the situation per se.

"There can be people with lots of social connections that feel terribly alone, and conversely there are people with relatively small social networks who do just fine," Kurina says. "Different people have different needs in terms of relationships -- and it's the space between what you want and what you have that can turn into loneliness."

The 95 participants in the study all had strong social connections, as they were part of a close-knit, rural community in South Dakota. Yet even small differences in their degrees of loneliness had an impact on their sleep.

Health.com: 28 days to a healthier relationship

Kurina and her colleagues asked the participants how often they felt a lack of companionship, left out, or isolated from others, and they used these responses to rate the men and women on a standard loneliness scale. Then, for one week, the participants wore a wrist device to bed each night that records body movement and sleep disruption (known as an actigraph).

Each one-point increase in the loneliness scale was associated with about an 8% increase in sleep disruptions and restlessness, the researchers found, even when they controlled for age, sex, body mass index, the breathing disorder known as sleep apnea, and negative emotions such as depression, anxiety, and stress.

Loneliness did not appear to influence sleep quality or daytime sleepiness, however, which suggests that the sleep disruptions were minor. More research will be needed to determine if these low-level disruptions can have effects on health similar to those seen in experiments when volunteers are woken up, but it seems plausible that comparable health consequences could occur, Kurina says.

Health.com: Loneliness hurts the heart

It makes sense that someone who feels alone and vulnerable may wake more easily throughout the night, since early humans may have evolved this tendency to protect against potential threats, the study notes. Even now, Kurina says, short-term feelings of loneliness can be healthy because they can encourage humans to make social connections. Problems can arise, however, if loneliness becomes chronic.

"People who have been very lonely for a while start to expect rejection, to the point where it can become a self-fulfilling prophecy," Kurina says. For this reason, she adds, it isn't always helpful to tell someone who feels isolated and insecure to just make friends, get a pet, or go on more dates.

So what's a lonely heart to do? Begin to rebuild social connections in an emotionally safe way, Kurina suggests. "Engage in situations where you're not necessarily expecting people to give to you, but where you're the one giving -- like volunteering, or common-interest meetings like book groups," she says. "Slowly you'll begin to see the world -- and see your relationships -- in a more positive way."

U.S. medical 'trash' saving lives abroad

Priscilla was diagnosed with a brain tumor three years ago, but she is now thriving thanks to donated medical supplies.Third World hospitals are saving lives with discarded medical materials from the U.S.These supplies are clean, safe and unused but are thrown out for various reasonsBy salvaging surplus supplies, nonprofits are also reducing waste in America

(CNN) -- Doctors will often prepare for surgical procedures by opening instrument and supply kits that contain up to 100 items.

Many of these items, such as scalpels, needles or sponges, go unused; they're just not needed for that particular procedure. But because of government or hospital regulations in the United States, they are frequently thrown away, even when they are still wrapped.

"There are thousands of tons of medical supplies thrown away every day that are unused or clearly reusable," said Dr. Bruce Charash, a cardiologist in New York.

Fortunately, some nonprofit organizations, including Charash's Doc2Dock group, are finding ways to salvage these items and get them to people who need them desperately around the world.

In Uganda, for example, many medical facilities lack the necessary supplies and equipment needed to perform surgery. The outlook is normally grim for children such as Priscilla, who was diagnosed with a brain tumor when she was 7.

But one Ugandan hospital, CURE Children's Hospital in Mbale, has been able to operate on Priscilla and more than 1,100 other kids thanks to its partnership with MedShare, a nonprofit that collects surplus supplies and equipment from the U.S.

"Brain tumors happen to children all over the world," said Derek Johnson, executive director of CURE Uganda. "The main difference in Uganda is that there are so few resources. But we were able to save Priscilla with supplies we get from MedShare."

'Our trash becomes their riches'

In the United States, surgical supplies aren't the only useful medical items tossed away.

Richard St. Denis, one of the Top 10 CNN Heroes of 2011, collects discarded wheelchairs through his nonprofit, World Access Project. With help from another U.S.-based nonprofit, Hope Haven, the wheelchairs are refurbished by senior citizen volunteers and prison inmates in Iowa before being shipped to rural Mexico.

St. Denis first visited Mexico in 1997, and he met many people with disabilities who didn't have access to wheelchairs, walkers or canes.

"I was shocked to see people using branches for crutches, being pushed in wheelbarrows and crawling," said St. Denis, who lost the use of his legs during a skiing accident in 1976.

Now, he has a permanent residence in Mexico and continues to do everything he can to help the people around him.

"We want to distribute the more than 75,000 wheelchairs we estimate get thrown away in the U.S. every year," he said. "What we call our trash becomes their riches, and it makes an incredible difference in their lives."

A win-win for everyone

In addition to saving lives, there's another benefit to sending unused supplies abroad.

"We are diverting a certain amount of waste that would be landfilled," said Dr. William Rosenblatt, a professor of anesthesiology at Yale University School of Medicine and founder of the nonprofit Remedy.

"At the end of a surgical procedure, our staff surveys the scrub table where the kit items remain and segregates all the materials that have been unused," Rosenblatt said. "It gets sent down to (a) decontamination area, and Yale undergraduate students sort through it and take what is useful. From here, it is packaged in bulk and given to a charity to be taken overseas."

Sometimes, perfectly good equipment is thrown away.

"Why would (hospitals) throw out a working sonogram machine or a working hospital bed?" Charash said. "One, it's not pretty enough. Secondly, there might be new technology available. In general, no one wants to use a 2005 (model) if a 2012 is available."

Occasionally, a hospital will simply switch brands and get rid of an entire line of unused items.

Supply manufacturers have been known to send items directly to the nonprofits if a box is so much as dented in transport -- items that could mean life or death for an individual in a Third World hospital.

The need greatly outstrips the supply

"On my first trip to Africa, the hospital director showed me a patient dying of malaria," Charash said. "He showed me a room with hundreds of bottles of medicine that would save his life, but (the medicine was) not given to him because they had no intravenous lines.

"That day, our Doc2Dock container arrived with reconstituted IV lines and 3,000 to 4,000 syringes. The doctor got an IV line, the patient got the medicine and was saved."

But while unused medical equipment is saving many people around the world, only a small percentage of hospitals ever actually receive these items.

"If you look at the volume of appeals we get versus the amount we are able to help, we are able to find funding for a quarter of the bona-fide projects," said David Pass, chief advancement officer for MedShare. "There is a great need out there."

The effort to find more funding is worth it, said Tanya Weaver of the American Foundation for Children with AIDS. Her nonprofit works in four African countries and has been able to help more than 100,000 people there thanks to surplus medical supplies from a couple of hospitals.

"If we can do this with the help of just two U.S. hospitals, imagine how many more could be served if others got involved," Weaver said.

Where everyone wants to work with HIV

Grady Health System's Ponce De Leon Center sees 5,100 patientsPatients must have a diagnosis of AIDS or white blood cell countPatients face hurdles with transportation, mental illness, substance abuseSome staffers are HIV-positive and have their own tragic stories to tell

Atlanta (CNN) -- Marianne Swanson closes her eyes, with smoky gray circles beneath her long lashes, as she counts the number of pills she takes every day for HIV: "One, two, three, four" in the morning, and three more at night.

They're drugs she'll need to take for life because of a virus that her late husband gave her in the 1980s, at a time when scientists were just beginning to understand AIDS. The disease claimed her husband's life, as well as two of her children.

Today, as a nurse educator at Grady Health System's Ponce De Leon Center in Atlanta, Swanson tells patients about her personal struggle with AIDS only if she thinks it will help them.

"It's not about me, it's about them," said Swanson, 55, "and helping them to be successful so that they can dream and reach the goals they would set for themselves."

One of the largest and most comprehensive HIV care centers in the country, the Ponce clinic has about 160 employees for 5,100 patients; that's one staffer per 32 patients. The patient base is expanding, and no one who meets the clinic's eligibility requirements gets turned away.

More than 70% of HIV-infected patients who live in Atlanta live within two miles of the clinic, according to the Georgia Department of Human Resources. There's also cutting-edge medical research in conjunction with the clinic, in addition to a variety of services -- from housing assistance to dentistry -- available to patients.

"People come here with a unified vision to take care of people no one else wants to take care of," said Dr. Vincent Marconi, 37, associate medical director of the clinic. "You're here not for the money, here not for the fame, but you're here purely to roll your sleeves up."

Patients get referred through health care providers and agencies, including community and faith-based organizations. But there are still many people living with AIDS in Atlanta whom the clinic has not yet been able to get into treatment, said Marconi, who is also affiliated with the Emory University School of Medicine and the Emory Center for AIDS Research. It will take larger efforts to improve patients' linkage to care, public awareness, and the many factors that make HIV transmission such a problem in Atlanta.

Poverty and drug use in Atlanta help make it the 8th highest metropolitan area in the country for new AIDS diagnoses, Marconi said. About 22% of people in the city of Atlanta have an income below the poverty level. In the 28-county metropolitan area that includes Atlanta, there are nearly 27,000 people living with HIV/AIDS, according to a 2010 report by the Georgia Department of Human Resources. In fact, this metro area represents 67% of Georgia's HIV/AIDS cases, the report said.

A large cluster, centralized in downtown and creeping outward in Fulton and DeKalb counties, represents 60% of prevalent HIV cases in the Atlanta metro area, according to a 2011 study in the Journal of Urban Health.

Within that cluster, 1.34% of the population has HIV, compared to 0.32% outside the cluster. The study found higher levels of poverty, injection drug use, and men having sex with men in the cluster than in the rest of Atlanta. HIV-positive men were more likely to live there than HIV-positive women, who likely acquired the disease from heterosexual contact.

HIV cases in this area were 78% male and 72% African-American, with 22% being Caucasian. The largest exposure categories were men who have sex with men (42%) and IV drug users (10%).

The clinic treats some of the sickest people in the area living with HIV. Adults who get treatment at the Ponce Center must have a previous AIDS diagnosis or a CD4 count that has dipped below 200. CD4 is a measure of white blood cells available to fight infection, and a count below 200 means the patient has AIDS. Dr. Wendy Armstrong, the clinic's medical director, said the current recommendation is for anyone with a CD4 count below 500 to get medications -- in fact, some say everyone with HIV should be on medication -- which means the clinic can't treat thousands more who need help.

"Systemically, nationwide, we are identifying people too late," Armstrong said.

It's hard to get enough money to do all that the clinic would like to do. "We are pretty much stretched to the seams," said Armstrong, who is also an associate professor of infectious disease at Emory University School of Medicine and an investigator in the Emory Center for AIDS research.

The clinic received $11.8 million in grant funding, federal and state, for the current fiscal year, representing about 65% of the operating budget, according to interim director Jacqueline Muther. Much of the federal funding comes through the Ryan White CARE Act, whose support to the clinic has been flat for years and recently declined, Armstrong said.

Limited Ryan White funding nationally makes it difficult for many patients to get medications; those who don't have coverage from Ryan White or their own insurance face costs of $1,500 to $2,000 a month for medications.

With more capital, the clinic could expand -- in fact, there are two undeveloped floors that have been too expensive to renovate -- but there also needs to be social change to curb transmission in the first place, Marconi said.

"My biggest frustration is that there's not enough hours in a day to take care of all that needs to be done. These people are very needy," said Lane Tatman, 56, a triage nurse who also has HIV himself. "A lot of them are homeless, have a mental illness, substance abuse (problems) and HIV and hepatitis C, and that's overwhelming to them."

First they have to get there

The clinic first began in 1986 but moved to its present location in 1993. It's an unpretentious gray building on a busy avenue that's convenient to downtown -- if you have a car. If you don't, it can be tricky.

The clinic serves 20 counties throughout the Atlanta's extended metro area, but the city's bus and train transportation system MARTA serves only two -- Fulton and DeKalb -- almost exclusively. The transportation system has been mired in budget woes for years; it receives no state funding for operations, according to MARTA spokesman Lyle Harris.

If the weather's nice, your best bet is to take the MARTA train to the North Avenue station and walk a little under a mile along the less-than-glamorous Ponce De Leon Ave. The gaudy Krispy Kreme doughnut sign is the best landmark; "AIDS clinic" is not written in big letters. You might miss it if you don't look up to the top of the grassy hill. or see the small Ponce De Leon Center sign by the driveway.

But that's assuming you're able to walk, and feel well enough. Otherwise, you might wait up to 50 minutes for a bus. And you have to pay the $2.50 fare. Patients who make their appointments at the clinic can receive free MARTA cards to get home, Swanson said, but they still have to get to the clinic in the first place.

Samuel, whose name has been changed at his request to protect his privacy, is one of those patients who has had transportation challenges. He's unemployed, 28, African-American, and got HIV from his ex-boyfriend, whom he didn't know had HIV. To get to the clinic by MARTA, he needs to take a bus to a train to another bus, a process that takes about an hour if timed properly. Sometimes his mother takes him. Sometimes he just can't get there.

So it's no surprise that patients show up late, throwing Swanson into a panic. She sees eight or nine patients in a day, and she has to review a lot of important information with each of them. To ease the transportation burden, she tries to schedule appointments with patients on the same day that they are using the clinic's other services, such as mental health, nutrition, dentistry and housing assistance.

"We try to bundle services, try to get as much done during one appointment," she said.

A typical day

If patients can get to the clinic, get prescriptions for medications and learn how to use them, the next obstacle is actually taking the drugs.

By taking medications properly, it's possible for patients to get their viral loads down to undetectable levels, which lowers the likelihood of transmission. Research from 2011 showed that taking HIV drugs immediately led to a 96.3% reduction in transmission of HIV to a partner who is not HIV-positive. Some people come to the clinic too late in the disease, or with illnesses that make it difficult to restore health, but there is always hope, Armstrong said.

Regardless, it can be hard to get patients to follow their drug regimen. Complications such as mental illness and substance abuse can interrupt medication-taking routines, Armstrong said. In fact, Swanson suspects many patients lie about not missing doses of their medication, perhaps out of shame or fear.

Swanson was the only nurse educator in the main clinic during the three workdays the week of Thanksgiving (it was closed on Thursday and Friday) and saw a lot of sick patients. On Tuesday, one of them was admitted to the hospital, someone else needed a follow-up appointment, and at least two had severe mental illnesses.

One patient she saw, isn't taking his medications. At the previous appointment, she had talked to him about disclosure issues, telling him he needs to be fair and reveal to his sexual partner that he has HIV. This time, he told her he's still having unprotected sex. Swanson reminded the patient that he is putting his partner at risk.

"All I can do is counsel him to take every pill, every dose, every day," she said. She also wrote on the discharge paperwork that he should encourage his partner to wear a condom.

By the afternoon she was exhausted.

While Swanson educates patients on their medications, Tatman plays the part of concierge, directing people where they need to go.

These days, almost everyone Tatman sees coming to the clinic has a cold and is worried it's going to turn into something more serious like pneumonia or bronchitis. Some patients do require more involved attention; others just "need a pat on the head," he said.

But there are plenty of things for Tatman and staff to consider: For instance, HIV patients can't just grab any over-the-counter medication; they need to watch out for interactions and side effects. And if the patient has a dry cough, it could be tuberculosis. There's currently an outbreak of TB among homeless people on Pine Street, which isn't far south from the clinic itself. All patients get tested for TB at least twice a year at the clinic.

Sick, but spoiled

Tatman commonly confronts patients who have very different goals for themselves than their doctors do. The clinic staff wants patients to get on medications and stick with them and follow up with appointments. Patients want to know where they're going to sleep and what they're going to eat.

"The sad thing is that there's no stopping this epidemic. It's worse than ever. We have a lot of very young people," said Tatman. "More and more African-Americans. People are coming to us sicker than ever."

Yet patients at the clinic are also "spoiled," Tatman says, compared to the 1980s when he got his diagnosis.

Tatman remembers that when he was in his 20s and found out he had HIV, three doctors told him "I have nothing to give you, go home and die." Today, there are many options for medications, including a single pill per day for patients whose bodies can take it.

Tatman has been at the clinic for 13 years; he came because when good medicines for HIV came on the market, he wanted to help people live. He'd watched many of his friends and co-workers die; the other surviving member of the staff of a restaurant he used to work at is still a patient at the clinic.

Like Swanson, he doesn't share his story unless he thinks it will help give a patient or a patient's family member hope. He remembers that the week he found out he had developed diabetes from HIV, he also had two patients with newly diagnosed diabetes. They all learned together how to use their blood glucose meters.

"The cool thing in this building is that everyone wants to be here to work with HIV," he said. "At other places, people don't want to deal with it."

From tragedy to hope

Tatman and Swanson are more the exception than the rule -- most people who work at the clinic are not HIV-positive themselves, although those that are discuss it publicly. There are also three peer counselors living with HIV who are tasked with helping patients navigate the health care system and their personal lives.

"In general, having staff members who are (HIV-)positive provides a genuine relationship between patients and providers -- this relationship is built in part out of real empathy. It also provides the staff with a different perspective for people living with HIV," Marconi said.

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