The Forgotten Disease
Memphis has more HIV cases per capita than St. Louis or Atlanta. Some AIDS activists say we're dropping the ball.
By Ashley Fantz
JANUARY 24, 2000:
June 1993, University of California Medical Center, Laguna Beach, California
There was hardly any room to move. Pressing against people downcast under fluorescent lights, the walls of the place seemed to be shrinking. Some paced. Others talked. Rows of people flipped nervously through magazines, their eyes concentrating on nothing, faces buried in glossy advertisements.
David Case was led into another room. A doctor barged in. No hello, no how are you, no smile.
You have it, he said. Theres no point in you being here. Make an appointment for later. You can go.
The doctor left. He had to tell a lot more people the same thing that afternoon. Sensitivity meant time he didnt have. The Centers for Disease Control had that January begun using a new definition for AIDS, skyrocketing the number of cases by 111 percent.
Case didnt say anything. The future was now a dreaded and undefinable limit. Roger Lyon, Cases lover of two years, had developed full-blown AIDS in 1982. The news that David had the virus seemed inevitable.
Many of his friends had already died in droves. They caught colds that quickly became savage pneumonia that became comas that became death. Today, he can count on one hand those who are still alive.
If anyone was going to test positive, it was me, Case says. I was lucky to have made it past the first round. I didnt do anything much different than the people who were tested positive back then did.
But that didnt make the news less horrific. He walked out the clinics back door and cried, eventually ending up at a friends house where he curled up in a bed, pulled the covers over his head, and tried to sleep.
If I could have slept forever, thats what I would have chosen, the 47-year-old Memphian says. Months later, Case, an only child, called his father in Chattanooga who suggested his son come home. He made it as far as Memphis, then received a phone call from another relative. Go anywhere else, they said, but youre not welcome here.
Theres the same fear today as there was 10 years ago, Case says.
AIDS may still carry the same stigma today, but are people still thinking about the virus in 2000 when its not making major headlines? And will the new faces of HIV such as African-American women and Hispanics be reached in time to save lives?
Other cities comparable to Memphis are grappling with ways to educate minorities who are now considered high-risk for infection. But in Memphis the health department tests only 1 percent of the Hispanic population. St. Louis, which had 3,709 HIV cases in 1999, declared a public health crisis with a goal of reducing that number by 20 percent.
Yet Memphis has twice as many cases as St. Louis and has more HIV-positive cases per capita than cities such as Atlanta. In response to the citys increased incidence of AIDS, this month Memphis received $1,031,000 in a Housing Opportunities for People with AIDS (HOPWA) grant.
But Case and other area AIDS activists say the Memphis and Shelby County Health Department isnt doing all it can to curb infection rates, especially among a largely untested Hispanic population and jail inmates.
There is also mounting discontent surrounding the Regional AIDS Committee (RAC), a relatively unknown five-year-old group organized by the health department. Case, who has served on the committee since its inception and is its only HIV-positive member, resigned this month in disgust. He charges that RAC gets little cooperation from the health department, lacks any plan for grassroots community AIDS education, and is plagued by infighting among members when they show up for meetings.
In an August 26th self-evaluation, 14 of the 25 members admitted to missing more than half of last years meetings and one of its two co-chairs attended so few meetings he was almost dismissed. Most members are unsure of RACs goals and complain that most people in Memphis dont know about it. Charged primarily with conducting surveys, members say the committee is bogged down in paperwork and has ignored community outreach.
We were never encouraged or given the resources to go talk to people face to face, to do more personal intervention, Case says. This is a disease that has to be talked about openly and a lot of people at the health department want to stick their heads in the sand. There are people in the community who are now, in 2000, targeted for this illness so the question is, Are we going to continue like this or are we going to really do something about it?
In 1985, six years after the first HIV-positive person was diagnosed in the nation, a few Memphis health-care workers began a door-to-door campaign to educate people about HIV. Many people still considered AIDS a gay disease, says Delois Bolden, health department HIV educational supervisor. Bolden became known around town as the AIDS Lady, after she began lecturing at churches and civic organizations about safe sex and drug use.
People in health care here knew that we had to do something, but we didnt know where to begin, she says. We were dealing on a local level with what most cities had at least a couple years experience with. We made our way in the dark.
Although the department has never funded AIDS-awareness billboards or bus posters like those found in most cities, two years ago workers placed hundreds of rows of white crosses outside their building on Jefferson signifying county residents who had died of AIDS. The display demanded attention, and Bolden says its been the departments most successful AIDS awareness tool. There was barely room enough to fit the 734 crosses.
Today, theres far less room. There are nearly 6,500 reported cases of HIV and AIDS in Memphis and Shelby County. Each year since 1992, HIV antibodies have turned up in the blood of more than 500 Memphians. An average of 277 documented cases of full-blown AIDS are reported each year. The highest infection rate plagues African-American women of childbearing age, 10 years and older an age perimeter the health department lowered last year from 18 after teen focus groups reported frequent sexual activity at that age and sometimes younger.
In 1992, that segment of the population reported 111 HIV positive cases. Last year alone, 161 cases were recorded the highest figure so far for a total of almost 1,000 infected African-American women. By comparison, only 17 white women tested positive last year. In fact, since 1992, there have never been more than 20 white women in a years time who have tested HIV-positive.
Those numbers may be misleading. Even though Tennessee law requires doctors to report to the health department if a patient tests positive, many private doctors do not, says Oretha Anderson, a long-time HIV educator and former two-year member of RAC.
Its commonly understood that because there is a higher concentration of poverty among African Americans, they are more apt to be tested at a government-supported free facility like the health department, Anderson says. More white women go to private doctors who they have close relationships with. Some of those doctors arent going to report that their patients tested positive if the patients ask them not to. That creates a huge discrepancy in the stats.
Thats an exaggerated view, says Vince Glover, the health departments manager of infectious diseases. Private doctors, he argues, often send their blood work to an outside laboratory for testing. Glover says the health department sends representatives to the labs in Tennessee to make sure they are accurately reporting the number of positive samples. (Labs outside Tennessee are not required to inform the health department of their findings.)
Im not saying that that potential doesnt exist, says Glover, but I dont think its a matter of a hundred people out there testing positive and we dont know about it.
Glover says the number of HIV-positive carriers in the white community is dramatically disproportionate to African Americans because more white people assume that they are not affected by the disease and therefore dont bother getting tested. He says resistance to education, including showing people how to properly use a condom, is actually higher in schools and churches within predominantly white neighborhoods.
But the most discouraging numbers are those that reveal that only three men and one woman in the Hispanic community tested positive for HIV (current estimates of the Hispanic population in Memphis range as high as 100,000). Only 88 Latinos were tested at all in Memphis last year.
Glover admits that the health department isnt doing enough to reach out to Hispanics.
The key to getting to that population is by forming alliances with people from the community, he says.
Gabriela Lemus is a newly appointed director of policy and legislation for Washington, D.C.s LULAC, a Hispanic support organization. She was invited to give presentations at a few RAC meetings last summer.
I informed them that STDs were a nationwide problem with Latinos, she says. I saw their assessment and surveys. They seemed like laundry lists to me. There were questions on their surveys like, Do you think HIV is a problem? They asked me how I would improve it, what I would do to reach out to that group. They were excited after I was finished; everyone asked me for my card and said they wanted to use me as a liaison. But no one got back to me.
There are many theories why so few Hispanics are tested. Glover thinks the health department, as a government agency, might scare away undocumented aliens.
Lemus disagrees, saying few Memphis Hispanics are educated enough to realize the importance of getting tested.
What you have here is a population of very young men and they all share apartments and they are bored theres a tendency to go to prostitutes, she says. Ive talked to two midwives, and theyve told me that when they work with Latinos they say that a lot of the women have STDs and they dont even know it. Theyre kids in their early 20s and theres nothing telling them about what kind of behavior leads to HIV. I know [infections among] African-American women are up, but [Latinos] are next on the list.
There are currently no health department programs or PSAs targeting Hispanics in Memphis.
In 1999, the health department conducted 110 lectures on HIV at mostly African-American churches, schools, community centers, and housing developments. The department set up only six off-site counseling and testing facilities last year all mostly catering to African Americans. Although Glover says the department works closely with Memphis colleges and universities to perform on-campus testing, deans of student affairs at Rhodes College, University of Memphis, Christian Brothers University, and LeMoyne-Owen College say the health department has not participated in HIV education or testing at their institutions. Glover says the department is planning a February 14th testing day at LeMoyne-Owen.
From a school perspective, theyve done very little, says LeMoyne-Owen dean of students Cedric Howard. I havent heard anything about the February 14th event and everything goes through this office.
Glover says the department is strapped financially and has few personnel to help with its HIV programs. There are 80 people on the infectious disease staff, including those who work with syphilis and tuberculosis. Only 30 work directly with HIV.
RAC members say they would like to help the department, but the committee was never intended to be a hands-on organization. Its goals were only to handle needs-assessment paperwork by randomly handing out surveys to friends and colleagues, calculating the results, and sending them to Nashville to the state STDs committee. That committee then sends the report to the Centers for Disease Control. The CDC makes funding recommendations that might eventually trickle down to local agencies.
Its not a perfect process, but its the only one we have, says the health departments Bolden, one of RACs co-chairs. When you have people on a committee who are affected or infected they bring a lot of passion to the project and they want to do more. But RAC was designed to be a needs assessment gathering group.
Although RAC members were asked to come up with new ways to educate, test, and counsel the community, they were also told that grassroots action was not part of the committees agenda.
At a meeting last September, RAC boasted more members present than ever before, including Lemus, former member and HIV counselor and jail activist Novella Smith Arnold, and Vincent Glover, who was invited to present the health departments plan to improve HIV testing in the downtown jail. For the first half of the meeting, RAC discussed their self-evaluation, which revealed that many did not know what the committees mission was and that the majority had missed more than half the meetings.
By the end of the meeting, as Lemus was trying to make her presentation, a shouting match erupted.
Smith Arnold accused Glover and the health department of dragging their feet in testing and counseling inmates at the jail. When Glover recited the general figures he had compiled relating to county residents infected with STDs, RAC member Mac Mathis asked why the committee could not have information about areas in town where the highest concentration of HIV is. Glover said that if the information were made public, it could stigmatize certain neighborhoods. Smith Arnold once again asked Glover what the health department would do to curb infections in the jail. He became agitated and walked out of the meeting.
I think that meeting was a healthy one, Bolden says. Of course, you are talking about evaluations; peoples opinions are going to come full force.
Thats a typical PC answer, says Sonia Jackson, a Friends for Life HIV educator, who says getting data from the health department was like getting blood from a turnip.
I think shes [Bolden] burnt out, she says. RAC needs new leadership.
Other RAC members echo Jacksons sentiment and say they were concerned that the continuous absence of the other co-chair, Reverend Wade Bryant, was jeopardizing the strength of the committee.
Then theres the problem with money. Mathis and Case say that they repeatedly asked for a copy of the budget under which the health department said they must operate.
Trying to get the changes made that we wanted seemed like an uphill battle without a budget layout, Mathis says. When we were told we couldnt do something, then we wanted some numbers to show us why.
Until it is substantiated that there is sex in the jail, then we cant say for sure it exists, says Vince Glover. A lot of what is spread about HIV in the jail its mostly rumor.
That might be a hard line to sell to Darius Little, who was raped by three gang members in 1995. Little filed suit against the Shelby County Sheriffs Department for lack of security and won in 1997. That case prompted a federal court to order an evaluation of the jail at 201 Poplar. Four corrections experts wrote in a related report last fall that acts of gang sexual assault and rape occur in the jail. Theres much more evidence than Littles case to suggest consensual and forced sex is common among inmates.
Although the frequency of sexual intercourse is difficult to estimate, the Federal Bureau of Prisons reports that 9 to 20 percent of prison inmates, especially new or homosexual, are victims of rape.
An inmate in the downtown jail is processed every seven minutes. On average, more than 3,000 inmates are housed there. The facility was built to house only 1,200. The health department tested just 1.6 percent of that number last year roughly 48 inmates. HIV testing is done on a voluntary basis, unlike other holding facilities some in Alabama and Mississippi that require testing as a part of probation or sentencing. In both states, inmates who test positive are segregated from other inmates.
Glover admits that the health department needs to conduct more HIV education and testing at the jail. He says the number of inmates the health department tests has risen to almost 5 percent and he hopes this year to start giving each person who leaves the jail a brochure containing a pocket-size AIDS information packet and condoms. Glover says that the health department will soon offer more testing to inmates after theyve been held more than 14 days.
Thats progress to me, says Glover. We have funding problems and Im not working with a full staff. Youve got to remember I handle not just HIV, but all infectious diseases in the whole community, not just the jail.
He is not receptive to the idea of administering clean needle kits to inmates who use razors or other makeshift needles to inject contraband drugs, mostly because the state has never endorsed such a program. Some U.S. prisons are cutting down on dirty needles in jails by providing inmates with bleach kits to sterilize needles. Glover was not aware of what a bleach kit is.
Novella Smith Arnold works closely with inmates. She officiated at a burial two weeks ago of a young man who believes he contracted HIV while in the downtown jail.
To say that there is no sex in the jail and that these inmates are not at high risk for infection is insane, she says. Its a transient place. People go in, and they might have sex or share a needle with someone else whos infected. They bail out, go home to their kids or their lover, and pass the virus on.
Sonia Jackson of Friends for Life teaches an AIDS 101 course at the Federal Correctional Institute and the Adult Offenders Center on Mullins Station Road. She has never taught the course at the downtown jail. Jackson says shed like to start a course at 201 Poplar, but says the transience of the population would make the six- to eight-week course difficult to finish. Despite her lectures on safer sex, she is prohibited from giving her students condoms because most corrections facilities, including the downtown jail, consider prophylactics contraband.
Its like, they can get drugs and weapons in there somehow, but no one can get condoms in there, she says.
The hostile relationship between Glover and Arnold hurts her work, Jackson contends. And her take on AIDS in the jail is different from either one.
If [prisoners] came in and [were] tested and then left and were tested, then you could say that sex is actually going on in the prisons. But, they dont want to admit that, Jackson says. The public cant know what is really going on. Do you believe in rehabilitation? You have to allow for some form of lying. By telling [the public] that theres a risk of HIV and there are drugs and gangs inside that is contrary to what we want them to think about, like going to class and being better citizens. Theyve got to feel that they have some hope.
To send inmates who have not been tested back into the community is whats spreading this disease, Case says. Everyone needs HIV counseling, people in the jail or people who have never been in the jail. Counseling is part of the cure. Maybe they need to be depressed and scared. Maybe they need a wake-up call. Not doing that is the same thing as lying, and lying is killing people.
Sitting in a downtown coffee shop, Case talks about his experience with RAC. His eyes become a more intense blue, his forehead crinkles, his voice rises and then, when you think hes hit the pinnacle of infuriation, he pauses. He seems exhausted, not so much from living with HIV, but from five years spent urging others to take action against a disease that within the past few years has assaulted Memphians worse than ever. Hes not happy to be quitting RAC. He wishes things could have been different.
This is the whole point, Case says. He offers a thought from his friend and lover of two years that appears in And the Band Played On, a book about the epidemic.
I came here today with the hope that this administration would do everything possible, make every resource available there is no reason this disease cannot be conquered. We do not need infighting. This is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape. Roger Lyon
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