- AL Reading Service
| Alabama — Just off Highway 431 in north eastern Alabama sits Boaz. Nestled in the Appalachian foothills this town of 75-hundred was settled by farmers who migrated over from Georgia in the late 1800’s, lured to the area by its lush forests and verdant farmland. Over the years the town’s economy morphed from one built on corn and lumber to one sustained by the exchange of the all mighty American dollar.
Boaz was once a mecca of consumerism, home to five outlet malls at one time. People used come from all over the country to shop here but Boaz’s chrysalis as a bargain hunter’s dream wasn’t a permanent thing. The outlet stores are closing down and the town is struggling to regain its economic footing. It’s this place, this town in flux, David Miller calls home.
“I was born in Birmingham and moved up here when I was probably six or seven years old, my dad’s dad had some land up here and he built a house and we moved up here.”
David’s been out of his dad’s house for a long time; now it’s just he and his Jack Russell terrier ‘Bama living in a small house, not far from the heart of Boaz. Just as present in his life as the town’s closing shops and his barking dog is David’s illness — he has AIDS.
“In the mid-80’s I’d tried to, I’d just recently divorced, and a cousin of mine had just graduated high and we decided, he decided he was going to go into the Navy, I had quit going to school at Snead State and decided I was going to go onto Auburn and thought ‘what better way to pay for it than to have the armed services, the Navy, pay for it’? So I went down and was going to join the Navy with him and I went down and everything went fine and two days later my recruiter called and said they wanted to see me back down at Maxwell Airforce and he didn’t know why. Went down there and called me into the office and the guy behind the desk when I went in told me to sit and told me I had AIDS and I had six months to live.”
Rosemary asks:“What was your reaction when you heard that? Did you even know what it was?”
“No I didn’t know what it was. He didn’t inform me what it was, he didn’t tell me to get counseling or to call the health department or to find anything about it, you know. I had heard something about a ‘gay plague’, you know back during that time that was what it was called, but they didn’t even tell me that’s what it was, they told me nothing just that I’d be dead in six months and I was in shock and I didn’t know what I was going to do.”
After being handed what was little more than a death sentence at the time, David went wild. It’s not uncommon, even now, for those newly diagnosed with HIV/AIDS to run from their illness. And while doctors often talk about the difficulty in getting patients to take their meds, just getting some patients through a clinic door can be a crapshoot…
“The biggest hurdle though is sometimes getting patients to come for the first time…”
Dr. Michael Kilby is the medical director for UAB’s 1917 Clinic, a world renowned HIV/AIDS facility.
“And so when we have a list of new patients on our board for the day we’re always very skeptical about how many of those are actually going to come.”
Many of those who try to run from their diagnoses often find solace in drink or drugs and David was no different. He didn’t actually come face to face with his illness until a hospital stint 1990; half a decade after the original diagnosis.
“Come down, just started getting chills, and I’d take a hot shower and I’d start freezing and apparently the partying had caught up with my and my immune system had just worn down. Spent about a month in the hospital. They built my immune system back up, explained what I had and how it was contracted, or possibly contracted.”
David, a white heterosexual, says he thinks he contracted HIV during a kidney operation when he was a child. But he doesn’t dwell on how he got the virus; instead he tries to focus on just living each day moment to moment.
In the mid 80’s, when AIDS became part of our national consciousness, it was a disease of bathhouses and crack dens — quickly becoming labeled a “gay disease” or a “junkie problem”. Affluent and middle class, white homosexual men were wasting away to the virus. It wasn’t uncommon for people to go to several funerals a week for AIDS patients at the epidemic’s height. The visible tragedy of the illness, and the fact that people were largely were ignoring it, forced the gay community to mobilize; by the late 80’s they owned AIDS. They shouted until politicians and the medical community could do nothing but listen. Eventually the spread of HIV/AIDS slowed in the gay community. But that activism had some unintended consequences.
Because the gay community owned AIDS, the vision of the illness as a “gay disease”, or “gay plague” as David put it, never really went away. That stigma is something doctors and social workers have to contend with everyday. Dr. Michael Kilby…
“In the small town environment I find that some of my patients are very reluctant to talk about their health or this new diagnosis.”
AIDS is increasingly becoming a rural problem — ravaging parts of the Midwest and Southeast. In Alabama a total of 9-thousand 221 people are living with either HIV or AIDS. But the changing geography of AIDS isn’t the only thing researchers worry about; there’s also the changing demographics to take into consideration. What was once a “gay white man’s” disease is getting blacker. Half of all new AIDS patients are African American. It’s also becoming more feminine.
“I think what we have here on is a disease that’s spreading through any kind of sex,” says Kilby. “It doesn’t matter if it’s male to male or male to female or female to male, it’s the fact that it’s transmitted sexually means that any of us are at risk who are sexually active and I think people would rather not think about that. They’d rather think that this is a disease that happens to somebody else, and not to me.”
But Kathie Hiers says more people will be infected if word about the changing reality of AIDS doesn’t get out.
“Unfortunately the South has the top ten cities for STDs in the country, it’s been that way for as long as I can remember. And by the same token the South is absolutely exploding with HIV disease. We are seeing the disease move along socio-economic lines into poor communities, rural communities, women and certainly minorities and young people.
Hiers is the CEO of AIDS Alabama. AIDS workers have known for years the virus was moving to rural areas. To try to stem the tide of infection Alabama launched a rural outreach program called the Alabama Rural AIDS Project. Hiers says launching the project was no easy thing.
“We had a lot of problems; I will say we were unprepared for how insulated rural areas are. And it was surprising too because in some rural areas we had a hard time finding the people. You know we would drive these rural streets and things would look empty then we would find a trailer at the end of a street that was just crowded and it would be the local barbershop/beauty salon for instance and it was the hotbed of where people hang out. We absolutely had a trust factor we had to overcome. Just that alone took us about a year. It took us coming back and coming back and coming back and helping people with other things to build the trust level. And by the end of the second year of this program people knew who we were when we came to town, they were a lot more open, in fact people started gossiping to us and so things got better after the second year.”
Hiers says another challenge was religion. The fact many churches view AIDS as a dirty, or taboo topic, hasn’t helped outreach and education efforts out in the country.
“I do think is some ways religion is hampering our ability to spread the knowledge,” she says. “I also know, however, that that has changed somewhat; it’s getting better and better. And actually on my board two of my best board members are very religious. But one lost a brother to HIV another lost another relative, they understand that HIV is something that impacts all people. You know it’s not about just promiscuous people. Human beings are sexual creatures. I think if you go into a room and ask how many of you have never had sex? There aren’t very many who would raise their hands. And if you ask how many of you have never had unprotected sex? I don’t think there would be very many people who always use a condom or whatever when they’re having sex. So this is not just something that impacts certain folks and I think that the religious community needs to understand that this is a medical problem. We need to move HIV education from the moral arena to the medical arena, which is where it belongs.”
David Miller, who spends his time speaking at schools and colleges, says another problem as far as the fight against HIV/AIDS in Alabama goes is what kids are learning in school; he says the “abstinence only” policy just doesn’t cut it.
“They really need to start early because kids are doing things we weren’t doing, you know, they’re doing it a lot earlier nowadays, and you know, I just don’t want it to be your daughter or your son sitting across from me when I go in to see my doctors.”
But about an hour down the road from Boaz in Jacksonville school officials think they’re doing just what they need to be doing.
Jacksonville High School is a large, sprawling facility sitting on acres of lush, green land. It looks more like a small community college than a high school.”
“The school we have 760 students,” says Principal Mike Newell. “Grades seven through twelve and it’s kind of an unusual configuration. You don’t have that many high schools that have seventh and eighth grade in there, so that’s how we’re set up.”
Newell walks through the complex, saying hello to students, pointing out the library with its shelves of books and beaming over the computer labs. It might strike some as odd that the state’s AIDS education program, which focuses on abstinence, started in this large, seemingly bucolic school district. But the program was created by Jacksonville’s health teacher at the time, Sue Jones.
“She was looking for a health elective,” Newell says. “I think she had done a lot of research on HIV and AIDS and I think probably around that time that’s when the state department was starting to push more AIDS awareness and HIV prevention.”
The Focus Program, as it came to be known, is a student led education initiative focusing on AIDS, STDs and other issues facing teens. It also promotes the idea that the only safe sex is no sex. Creator Sue Jones has since retired from Jacksonville but has found a new career as the Statewide Director of Focus.
“When I retired from Jacksonville High School in the spring of 2000 the program was funded through the Center for Disease Control and Prevention to go statewide,” Jones says. “They wanted me to do what I had done in Jacksonville in other schools and for the past five years I’ve been fortunate enough to do that and I don’t feel like I work a single day because I just enjoy it so much and I’m working now with schools all across the state implementing the program.”
Jones discusses what the students do in Focus but eventually turns to the controversy surrounding the abstinence only policy.
“I don’t understand how any responsible adult can promote anything else and I did that before the state mandated it in 1987, I started teaching in 1975, I’m dating myself now, but that’s, you know, not just for disease prevention but abstinence from sex is the best for our young people emotionally as well as physically.”
Rosemary comments: “I think there is a worry among these other AIDS prevention people that in focusing so much on abstinence you are overlooking the fact that teenagers are going to have sex and if we’re really looking to prevent HIV/AIDS then maybe we should arm them fully.
“Well they say that because they’re in the trenches,” says Jones. “They’re the ones who are treating these teenagers who are becoming pregnant and infected and in the Youth Risks Behaviors Survey that’s presented nationwide by the Centers for Disease Control and Prevention — Alabama students have said in response to the question have you ever had sexual intercourse? 57% of our students in Alabama have said yes to that; in the rest of the nation 47% have engaged in sexual intercourse. And I can go on and on and on with statistics. So these people in public health and community based organizations are seeing this and so that’s why they’re saying, let’s promote abstinence but let’s take it a step further and let our young people know that if they are making these unhealthy choices that there is a better way then not using anything at all.”
But AIDS Alabama CEO Kathie Hiers thinks teenagers need more information and she worries about the emphasis on abstinence…
“I don’t think that we can base our education on religious beliefs. We have to base our education on science and on what works and if they kids are sexually active then they need the information to prevent getting HIV disease.”
But for Jones this isn’t a religion issue, it’s about teaching what she, and the state and federal government, see as the only responsible thing. For the last five years the United States Department of Health and Human Services has been pushing an abstinence only policy — tying funding for community health agencies to the promotion of abstinence, this year, 1 billion dollars in funding.
The Department of Education also promotes abstinence and schools around the country have scrapped more traditional sex education, dealing with safe sex, male and female anatomy and contraception, in favor of the “no sex before marriage” message. All of this is happening even though study after study has shown that American parents, though they want their kids to abstain from sex, still want their children to have access to contraception if they start “doing the deed”.
Sue Jones says just because Focus is geared toward abstinence doesn’t mean it totally ignores other topics surrounding sex. She says they just don’t cover things like safe sex the way some would like them to.
“Don’t promote it, we promote abstinence, but we say if you choose to become sexually active that this is the failure rate of the different methods of that can be used to prevent pregnancy.”
Back in February students and teachers from all over Alabama gathered in Birmingham for the 2nd Annual Youth Council for HIV Education and Prevention. The goal to get more schools involved in Focus. The students spent the afternoon talking about some of the issues facing them, including drug use and, of course, sex. The idea is to bring students up to speed on the issues. Under Focus students become the educators, what are called “peer educators”. They often end up being who teens turn to with questions about birth control, AIDS and drugs.
“The reason that I’m in Focus is I think it’s about giving someone else a second chance, not necessarily stopping it from happening cause it’s high school students, they’re gonna have sex, look at the media that’s what they influence you to do.”
Maddie Suber is a peer educator in the Focus Program at her school in Sylacauga. She went so far as to have herself videotaped getting an HIV test to help kids at her school better understand the process.
“A way to relate to the students is the MTV, VH1, all those channels that they watch,” Suber says. “We chose to do the MTV ‘Real Life’, like ‘I’m a Cheerleader’ or ‘I’m a something’ so we said okay, ‘Real Life: I’m Getting Tested’ and it was actually like a reality show, like I’m really doing it and I really did it and it was painful because I didn’t have anyone to hold my hand because I got poked with a needle and there was blood but other than that it was fine and students were like ‘Oh, was that real?’ and I was like ‘Yeah it was real, I wouldn’t fake gettin’ poked’ and so we did that and that lead other students to say can you take me and I said sure.”
Suber says the community has been fairly supportive of the Focus program and its message. She’s actually surprised by how well parents have taken it all in. But not all communities are as open about what is seen as “private business”.
Over the course of reporting for this documentary I was supposed to spend an afternoon at a rural high school, sitting in while an abstinence educator gave her presentation to the students there. It had taken months to get a date finalized and on the morning I was supposed to drive up I got a call from the high school principal, who was noticeably upset. It turned out that some school administrators were worried about that parents would get upset if they caught wind of the fact that a reporter, working on an AIDS story, would be in the school. I didn’t get to go. Just before hanging up the principal apologized again and said to me, “You just don’t understand the way things are here”. Maybe he’s right, but I know someone who does, Jackie Chaisson…
“I’m a community outreach worker. I cover six west Alabama counties for West Alabama AIDS Outreach.”
Chaisson spends much her time behind the wheel of her car driving Alabama’s country roads, trying to reach out to rural communities that often are hostile to outsiders of any kind, but especially outsiders who want to talk about what goes on behind closed doors.
“I’m coming in from the outside and it’s very obvious that I don’t live there to be honest with you because some of the counties I go into are predominantly African American and I’m a white woman, but I just try to meet people where they’re at; I know it can be a very uncomfortable topic to talk about and I just try to make people as comfortable as possible.
I meet Chaisson in Tuscaloosa one morning and spend the entire day with her traveling Alabama’s Black Belt.
“We’re going over to Pickens County we’re going to talk to parents at a Head Start. This is a, they have parent meetings and this morning they’re bringing in several different speakers from several different agencies and they’ve asked me to do an education group on HIV/AIDS at the Head Start in Aliceville, Alabama, in Pickens County. And my goal is not numbers my goal is reaching people and if we have two people than I’m willing to do it.”
The crowd’s a little bigger than that, but not much. Only four women have shown up at the Aliceville Head State headquarters. Chaisson spends close to an hour with the women, going over what AIDS is, how you can contract it and, also, the different ways one can get tested for the virus. She holds up what looks like a toothbrush as she explains the process…
“This test is for the mouth, we’re testing in the mouth but are we testing the saliva? Is saliva one of the body fluids I told you about? No, the virus lives in vaginal fluids, semen, breast milk, blood. You rub this swab here between the cheek and the gums and that’s where the virus lives in the mouth if the person’s infected and what happens is there’s a special solution on this swab that will pick up the HIV antibodies, which is the virus, in the mouth. If the test comes back positive, we’ve got problems.”
When Chaisson’s presentation is over, she passes out goodie bags full of information about AIDS, West Alabama AIDS Outreach, testing and condoms.
“Please share this information. There’s condoms in there, both male and female, did you all know there was a female condom? If you’ve ever used a tampon then you can use a female condom but you would only want to use it the one time only. These condoms can be very expensive to buy. If you come to Tuscaloosa for any reason or if you have young brothers and sisters, um, would you all believe I’m offering you to come to our office and I will give you as many condoms as you can use?”
In the Black Belt, like many rural areas, a lot of health education relies on word of mouth. Whether it’s passing along information given by outreach workers like Chaisson, the news of an upcoming health fair or free HIV testing, the old gossip trail is almost as reliable as any other form of communication. Well, that is when the information is something people want to talk about — AIDS tends not to be that.
“If you’re in a rural place and somebody knows you have HIV, everybody knows. And you can, especially if you’re a woman, and I don’t know quite why it’s so much worse for women, but it is, you can be totally shunned.”
Dr. Brownwen Lichtenstein at the University of Alabama spends virtually all her time researching AIDS issues in the Black Belt. She says she’s not at all surprised by the obstacles Chaisson has faced doing her work.
“An outreach worker coming out, I mean, everybody will know who she is and why she’s there in two seconds flat,” says Lichtenstein. “It’s just not going to be successful to get out there for prevention and there’s a lot of resistance also, through the churches, you know, they really don’t want to know about it. There are a few who do, but most don’t. You know it’s associated with sin and stuff you shouldn’t be doing and there’s just a yuk factor and they just don’t want to touch it.”
But one lawmaker thinks that’s unacceptable.
“You’ve got to get the churches engaged.”
Artur Davis is the Democratic Representative for the 7th House District in Alabama, an area that covers the Black Belt. Davis has been involved in the fight against AIDS since taking his job on Capitol Hill.
“Unfortunately you have too many ministers and too many people in the community who have a twenty-five year old definition of AIDS and a twenty-five years out of date notion of AIDS and we have to let people who are on the ground playing leadership roles in the Black Belt realize that this is no longer, forget just being a gay, white male disease, this is no longer a homosexual disease. It is a disease that has broken into the mainstream population and you have to be concerned about that.”
The black leadership’s silence on the epidemic is something one AIDS worker in Birmingham knows all about.
“I am a forty-three year old African American and I have been positive for thirteen or fourteen years,” says Terry Johnson, Hope Project Coordinator at the Community Church of the Covenant — a black church in Birmingham.
“I relate more to the GLBT, gay lesbian bisexual transgender community because they have been more accepting of my lifestyle even in dealing with my illness I guess I’ve had more support from that so it’s a barrier for myself as an African American to get into the churches or to get into any of the African American venues so basically a lot of times I feel I’m being met with a hostile environment or preconceived notion that the disease is based on a person’s lifestyle.”
Worries over that hostile environment are why Democratic State Representative Laura Hall and her husband kept their experience with AIDS quiet.
“We suffered in that fear until three months prior to his death…”
Hall’s son Eto was diagnosed with AIDS in 1988. All through his illness she and her husband struggled silently, worrying what friends and family would think of Eto once they knew what he had. It wasn’t until late in his illness that they finally opened up.
“At that point he said, he realized that he had very little time left and that there was very little damage or anything that anyone could do to him,” Hall says. “He was suffering, he was at the point, you know, where it really didn’t matter. It was a quality of life and having his family’s support. It was quite difficult. My mother did not know until three months prior to his death, none of the other members of my family knew. It’s just something that we went through very privately and very quietly and I think fearful because I, being open, being in the community, being involved in the community, you wonder what people think, what will people say, I mean from family to community to friends.”
After Eto’s death Hall became an increasingly vocal AIDS advocate, that advocacy eventually leading her to the statehouse in Montgomery.
“Part of his request, or one of his major requests, was that we would work with families and individuals to ensure that they would not suffer in silence and fear as we had during his illness.”
Hall spends much of her time working to dispel myths surrounding HIV/AIDS, much as Terry Johnson does. Through his work with the Community Church of the Covenant Johnson does educational outreach, talking to people on the street, in beauty parlors, wherever they’ll listen; he also works to get the churches more involved in the fight against AIDS. That hasn’t been easy.
“So many in the church has died of it and it’s still such a hush-hush issue, you know and people realize it’s not just, it’s not only a gay disease, it’s not a gay disease anymore it crosses all barriers, all people and all races but still the stigma is there.”
But Johnson thinks the stigma isn’t just because AIDS is a sexually transmitted disease, all though that is part of it. He says there’s another reason the African American community has been virtually silent on the subject.
“It’s like when I was in high school when did a thing called ‘A Silent Killer’ about hypertension and people didn’t want to talk about that and you know if people had diabetes or cancer they didn’t want to talk about those diseases and it’s the same thing with HIV. I don’t think it’s just because it’s, a lot of time it’s related to sex or drug use it’s just a lot of times it takes African Americans a little longer to get connected or educated about certain diseases.”
Johnson says things are getting better. Some preachers are beginning to get over their discomfort with the illness and have begun discussing the AIDS epidemic with their parishioners. Johnson says he just wishes they’d be a little quicker about getting the prevention message out there.
Seemingly a world away from Alabama, the U-Street area in downtown Washington D.C. is thriving again, after languishing in economic limbo for about thirty years. The inner city neighborhood was destroyed in the racial riots of 1968; left in virtual ruins until the early 90’s when Metro stops were built making it more accessible to D.C.-ers. Now it’s an area bustling with activity and slowly being gentrified like so many other urban centers across the country.
Just a few blocks away, at the intersection of 14th and S streets northwest sits the Whitman Walker clinic. Started in the 70’s as a gay and lesbian agency, it’s now the district’s premier AIDS services organization and Dr. Pat Hawkins is its policy director.
“Whitman Walker Clinic was actually founded as a free clinic back in 1973, so we already had put in place for the gay and lesbian community so we already had a lot of volunteer physicians and a board in place when the AIDS epidemic hit,” Hawkins explains. “So we were very well positioned to begin to respond to that epidemic which we did and Washington D.C. was the first public funding for AIDS in the country, it was a hotline contract that they gave to the clinic in 1983 and since then we just grew as the needs grew and as we saw what people needed we developed our programs so we now have of 250 fulltime employees about 2000 active volunteers and we serve approx. between 7000 and 8000 clients a year.”
And while it might appear that Whitman Walker dwarfs AIDS Alabama, Alabama’s big services provider, appearances aren’t always what they’re cracked up to be. While AIDS Alabama handles between 500 and 700 patients directly, the funding the agency receives helps serve about 6000 Alabamians each year. CEO Kathie Hiers says the difference is that AIDS Alabama relies on partner agencies and subcontractors to reach everyone.
“We contract for education work for social workers for housing services, you know a variety of different types of particular items such as rural outreach. We have a statewide program that is a special project of national significance it’s called the ‘Alabama Rural AIDS Project’ and we do outreach in 35 of Alabama’s poorest counties.”
Both AIDS Alabama and Whitman Walker are members of the Southern AIDS Coalition, or SAC. SAC’s goal is to make the southern AIDS epidemic better known and to get more money for prevention and treatment in the south. That money question, though, has put Whitman Walker at odds with SAC.
“What SAC has approved,” begins Hawkins, “and as you know I did not support this position, is merging Title 1 and Title 2, basically doing away with Title 1 and basically giving the money to the states to distribute on a per capita basis.”
She’s talking about the title system under the Ryan White Care Act, the only federal law setting aside money for HIV/AIDS agencies. When the Care Act was created AIDS was still a big city disease, at least on paper anyway. There are a series of what are called ‘titles’ under the law that mandate how money is given out. Title 1 areas tend to be cities with large concentrations of AIDS patients like DC or San Francisco or New York. Title 2 is pretty much everyone else.
Agencies in Title 1 cities, like Whitman Walker, get more money under the Care Act than Title 2 agencies like AIDS Alabama. Again, CEO, and SAC co-chair, Kathie Hiers.
“The way the monies are funneled from the federal government to the states and the cities is unfair. Alabama is considered rural by the federal government and because we don’t have any of what they call Title 1 cities we get less money per patient.”
But there are some disputing the gap between Title 1 and Title 2. A study by the CAEAR Coalition — a conglomeration of many of the Title 1 cities — shows that spending per AIDS patient is actually much more equitable than previously believed. Looking at their statistics, there’s only around a five-hundred dollar difference on spending per AIDS patient.
But Hiers says those numbers are flawed. It groups states into regions, throwing off the average. Federal funding is handed out to states and larger cities, not to regions. She says a better look at the disparities in funding is a report done by the General Accounting Office. In 2004 the GAO found a 15-hundred dollar difference between spending in California and Alabama. Hiers says that’s just not acceptable and maintains the Ryan White CARE Act has to be changed. She says the Title 1 and Title 2 monies have to be given out more evenly. If that can’t happen then SAC would like to see the two merged.
“A lot of what I do is try to get that formula changed the Ryan White Care Act is only up for reauthorization every five years and right now is the time it is being considered so if we don’t get it changed then we have to live with it another five years and people in the South and in Alabama will continue to die because they can’t get medications.”
But Hawkins says any change that would do away with Title 1 would be a catastrophe for big cities. But Hiers says the nation is going to see a larger catastrophe if the funding isn’t leveled.
“In my mind, we are going to continue having crises around ADAP and other HIV care issues as long as we get half per patient as someone in New York City. It’s so pitiful in Alabama, on our AIDS Drugs Assistance Program we have about 32 drugs, in New York they have 494. So, you know, that alone sort of shows you the disparities that exist between the big cities and what are considered the rural areas.”
Again, Whitman Walker Policy Director Pat Hawkins.
“I don’t know anyone who doesn’t believe we need parity,” she says, “that we need to have people, it shouldn’t matter where you are you should have access to good care to basic care in this country, now parity isn’t the same as per capita equity. I live in Southern Maryland, outside D.C., the cost of living in Southern Maryland, the cost of care in Southern Maryland is very different from the cost of care in D.C. New York has enormous costs their medical costs are much higher than they are here because their cost of space and wages is much higher. So it’s not a dollar, you can’t go by a strict dollar amount, you have to find a way to adjust for the medical costs, of what the medical costs are in your area.”
Hawkins lived in Anniston, Alabama, for a while when she was younger and says she’s sympathetic to what SAC wants to do. She just thinks there’s better ways of making sure all AIDS patients have the care and meds they need. She says what she’d like to see happen is the federal government make AIDS research, prevention and education a higher funding priority and so would Democratic Congressman Artur Davis.
“The problem is that there’s a small number of Congress interested in this issue,” Davis says. “My office organized an event with Kathie Hiers, not even for members of Congress but for their staff, dealing with Ryan White and the fact that Ryan White disadvantages seven states and, frankly, we had relatively few offices participate, Democrat and Republican. And that’s discouraging because that suggests that there’s still people that either have stereotypes about this disease or people who simply do not know the degree to which it’s exploding in rural Alabama and rural states around the country.”
“I can remember the first time I heard even a comment made about AIDS or the snide comments that came from legislators…”
Again, Democratic State Representative, Laura Hall, whose son Eto died of AIDS. She says she’s not unfamiliar with Davis’s problem. Hall says when she first got to Montgomery it was a battle to get lawmakers to pay attention to AIDS.
“I can tell you know that I can go to the floor, I’ve shared my story a couple of times on the floor and I can tell you that that comment, we had a legislator last year make a comment and immediately I went to the mic and said I would respectfully request that you not make such comments.”
And while lawmakers at both the state and federal levels struggle to overcome the stigma of AIDS, and make it more of a priority, the reality remains that AIDS workers in Alabama struggle to just do their jobs.
“We need more money for medications alone in Alabama,” says AIDS Alabama CEO Kathie Hiers. “We have the longest waiting list in the country for low income people who need meds they go to the state health department and they have to get on a waiting list. Right now our waiting list is over four-hundred people in Alabama. You know, this is the greatest country in the world, the richest country in the world, and I feel very strongly that we owe our own residents at least medications to stay alive.”.
But there is hope things may begin to turn around here in Alabama. Since talking with Hiers the state has been able to eliminate the waiting list, for the time being, thanks in part to Medicare Part D; also because of an infusion of states dollars into the AIDS Drug Assistance Program, or ADAP.
“I come to you today with some good news,” announced Laura Hall to a large crowd in Montgomery. “Yesterday in the committee, the government finance and appropriations committee, the five million dollars that is need for the federal ADAP match came out of committee…”
Representative Hall was a featured speaker at an AIDS Media Day in the state capital back in February. That five million for ADAP was eventually passed by both houses of the legislature and signed into law by Governor Bob Riley; as was a 500-thousand dollar appropriation for AIDS Alabama.
Hall says the swell of money for AIDS services this year gives her hope, but she doesn’t think AIDS is ever going to be a priority for people outside the HIV/AIDS community until those who have the illness are willing to speak up.
“And until people are able to put a face and realize that it does directly impact them then it’s going to continue to be difficult but that face also has to be willing to share what they’re experiencing.”
David Miller up in Boaz is trying to be that face for Hall and all the others who are working to improve the care AIDS patients get here in Alabama, sharing his story with young adults all over central Alabama.
“I think it does me better, it does me more good to talk to them than it does for them to listen to me.”
And David says he’ll keep telling his story as long as people will listen.
– Rosemary Pennington, June 29, 2006
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