The Sticking Point
By Jacqueline Marino
FEBRUARY 2, 1998:
Outside Rhonda Schultzs tidy East Memphis apartment, a cold January rain has been falling for days. Its 10 a.m. and Schultz has already been awake for five hours. Dressed in a black sweater and stretch pants, she picks up an issue of Poz magazine from the coffee table and turns to an article headlined Shalala Infections.
Since May, the magazine for HIV-affected people has been keeping track of HIV infections related to intravenous drug use. They are considered Shalala Infections because U.S. Secretary of Health and Human Services Donna Shalala has not lifted a ban prohibiting the use of federal funding for needle-exchange programs, which evidence has shown to be effective in preventing new infections.
Last fall Congress declared a moratorium on using federal funds for such programs. The moratorium expires March 31st, but Shalala has not indicated whether she will lift the ban then.
Schultz thinks of her own affliction as a Shalala infection. Frail, gaunt, and barely 103 pounds, the disease has weakened her health considerably. But Schultz still has the power of her convictions. Like AIDS activists across the country, she thinks the federal governments reluctance to financially support needle-exchange programs is irresponsible and inexcusable.
If they had had that [needle-exchange], maybe Id have my life today, Schultz says.
Even though AIDS is claiming the lives of more heterosexual women, Schultz, a 43-year-old, white, married, middle-class mother and grandmother, still doesnt fit the typical at-risk demographic.
Schultz says she never used intravenous drugs, yet she thinks an HIV-tainted needle, or maybe several needles, infected her. Most likely they were needles used to inject cocaine into the veins of a friend and co-worker, who died in 1995 while Schultz was holding his hand and praying him to heaven.
This was the same person who infected her eight years earlier as she tried to revive him from a drug overdose at a local dance bar. Schultz had met him at the door to the mens room, where he had been spending a good part of the night, and noticed he looked wired, as if his eyes were popping out of his skull. He took a few steps outside before falling flat on his face and knocking out his front teeth.
Schultz, who is trained in CPR, noticed he wasnt breathing. Her mouth filled with his blood as she struggled to breathe air into his lungs.
Three months later, after donating to a local blood bank, a certified letter from the Red Cross arrived at her home. Her blood had tested positive for HIV.
At that point, Schultzs life changed dramatically. With an HIV-negative husband and support groups filled with gay men, she felt isolated and alone. She found herself spending more time with the friend who infected her. In spite of her warnings, he continued to use intravenous drugs and share needles with whomever happened to be getting high with him.
If clean needle exchange was possible, he would have been taking advantage of that, she says. But unless you have a bunch of needles, you use the same ones.
Eventually Schultz went through Red Cross training to become an AIDS educator. Lately shes been too sick to work, but she continues to speak to people about AIDS and lobby politicians on AIDS policy. Over the last few months, Schultz has been trying to drum up support for a needle-exchange program in Memphis.
Ive written letters to politicians, she says. Ive talked with people at the AIDS consortia, but people tell me Im wasting my time. They tell me Im hitting my head against a brick wall. Itll never happen here.
For people opposed to needle-exchange programs, only one thing is more unsavory than giving needles to junkies. And thats using tax dollars to buy needles to give to junkies. Despite the Clinton administrations vow to declare an all-out war on the growing AIDS epidemic, it has yet to lift the ban on federal funding for needle-exchange programs, which is essentially the roadblock that makes such programs inaccessible in Memphis and in many other parts of the country.
Its not for lack of advocates. Needle exchange has been endorsed by everyone from Elizabeth Taylor and Miss America Kate Shindle to the American Medical Association and the U.S. Conference of Mayors. Its not for lack of proof needle exchange works either. Researchers from the Centers for Disease Control, the General Accounting Office, and others have found that needle exchange reduces HIV transmission and does not increase drug use.
Those opposed to needle exchange, including the national Family Research Council and members of the religious community, contend such programs are part of a larger effort to legalize drugs. They have questioned the scientific findings and produced studies that suggest the life-saving potential of such programs is grossly overstated.
Although AIDS will kill some, most will die from drug overdoses or other high-risk behaviors, writes Robert L. Maginnis, a policy analyst for the council.
The real reason needle-exchange programs have not gained widespread acceptance is because, as one AIDS activist put it, we are reluctant to face the reality of intravenous drug use in our communities and because we dont want to indulge it. Needle-exchange programs require us to do both.
We tend not to look at it because we dont want to look at ourselves, says Sharron Moore Edwards, program coordinator for the AIDS outreach prevention program at New Directions, a substance-abuse treatment center. Its easy to ignore it, but instead of going away, its festering. Its getting bigger than anything Ive ever seen in my life.
By September 30, 1997, 2,960 Shelby County residents had tested positive for HIV. The Memphis and Shelby County Health Departments statistics show as many as 20 percent of people with AIDS say they could have been exposed to the disease by injecting drugs. But given the shame associated with intravenous drug use, advocates say many drug-users lie and claim to have been infected some other way.
Tom Roden, executive director of Friends for Life AIDS Resource Center, thinks intravenous-drug use is responsible for about a fourth of local HIV infections. Nationally, it accounts for more than one-third of infections.
While the federal government has boosted funding for most AIDS-related programs, Congress has upheld the temporary ban on using federal funding for needle-exchange programs until March 31st. After that date, Shalala can lift the ban if she determines that the programs effectively prevent the spread of HIV and do not increase drug use.
Unlike in some East Coast cities where injected drug use has become the most common mode of HIV transmission, the health departments statistics show the majority of local people still get AIDS through sex. But with the reported increase in heroin usage in Memphis, intravenous transmission of HIV is on the rise.
Needle-exchange programs provide intravenous-drug users with an opportunity to trade their used syringes for sterile ones. Proponents say such programs link drug-users to the health-care system. In addition to providing clean syringes, outreach workers also supply them with information about safe sex and drug treatment, as well as other services.
Local AIDS service providers overwhelmingly support needle exchange as a bona fide
method of prevention. But those who have expressed interest in starting a program here say they have been discouraged by the lack of money and support.
Dr. Chris Sands, who treats people with AIDS at Methodist Hospital, says he has met nothing but resistance in his efforts to organize a needle-exchange program. Even among others involved in the HIV/AIDS community, he has detected a belief you will encourage IV-drug abuse by giving away needles.
Sands, an associate program director for the Methodist Hospital Central Internal Medicine Residency Program, has observed programs in New York City and Jersey City. In his opinion, not all drug-abusers can be cured.
I think there are some people who are going to do drugs no matter what, even if they have to use toilet water and a dirty needle, he says. Needle-exchange programs, however, can successfully prevent many users from contracting AIDS and spreading it to their sex partners, their children, and whomever else they might expose to the virus.
Like the federal government, the state doesnt allow its funds to pay for needle-exchange programs. The local health department hasnt endorsed them either.
When the Flyer first contacted the health department about this issue, Brenda Ward, director of public relations, said the department has not supported needle-exchange programs because we dont want to encourage drug use.
Its been a long time since it was brought up, but the climate was not one where we thought the community was ready for it, she says.
After consulting with health department director Yvonne Madlock, however, Ward called back to modify her statement.
It would take community input and further public-health assessment in order to make a decision as to whether a needle-exchange program would be appropriate, she says.
AIDS advocates say such lukewarm attitudes on the part of public-health officials reflect a disregard for the facts and a reluctance to institute a proven strategy of preventing AIDS. According to a 1996 study published in the British medical journal The Lancet, a national needle-exchange strategy could have prevented between 4,394 and 9,666 new HIV infections in the United States between 1987 and 1995. The researchers also predicted that an additional 5,150 to 11,329 preventable infections could occur by the year 2000 if needle-exchange policies do not change.
The Lancet editorialized this month that given the weight of the scientific evidence supporting the efficacy of needle-exchange schemes, it is hard to attribute the reluctance to back such programmes to anything other than political considerations.
Needle-exchange programs now exist in half the states, Tennessee included. But funding is scarce, skeptics abound, and organizers go to great lengths to keep their programs out of the public eye.
In Nashville, for example, opposition on the part of several Metro Council members prompted the health department to transfer a $28,000 needle-exchange program grant to an inner-city church. Dr. Stephanie Bailey, director of the Nashville and Davidson County Health Department, says she feared the council might have voted to return the grant because some council members felt a needle-exchange program would encourage drug use.
We put all the statistics in front of them and we still had a verbal minority that made such a debacle of it, she says. I didnt want to put it to the test.
To avoid a vote, Bailey transferred its grant from the Washington D.C.-based Drug Policy Foundation to the Metropolitan Interdenominational Church, which began implementing the program in July.
I wasnt going to let anything keep us from doing a needle-exchange program in Davidson County, she says.
Bailey became a firm believer in needle-exchange programs after a pilot program yielded positive results. More participants in that program went into drug treatment than expected, even more than the national average.
Joyce Perkins, a longtime AIDS activist who worked in underground needle-exchange programs in New York City a decade ago, coordinates the Nashville program. There is no advertising or promotion aside from word of mouth. Even the words needle exchange were deliberately excluded from the name of the Davidson County Harm Reduction Program.
Since July, about 10,000 needles have been distributed. They come in kits of 10, along with cotton, cookers, alcohol wipes, antibiotic cream, bleach for cleaning needles, and condoms.
To one reporter who called the church pretending to be a drug user, the needle-exchange programs modus operandi bore a striking resemblance to a drug deal. Over the telephone, the church gave him a pager number to call. He was told to page an outreach worker who would meet him somewhere with clean syringes.
Most participants, it seems, do not call in. Perkins says outreach workers drive a city-supplied van to drug-infested areas of the city. They also do home deliveries and provide needles to people on an as-needed basis. Some outreach workers strike out on their own, blending into the inner-city neighborhoods and attempting to penetrate hard-to-reach groups of intravenous-drug users. Perkins says it takes a long time to gain trust on the street. Thats one reason she doesnt let reporters accompany the outreach workers.
In some places, people still think Im a cop, she says.
In addition to clean syringes, the outreach workers offer information to the programs participants, if they request it.
Its not, Heres a needle. Come to treatment, Perkins says. But thats what she hopes happens. About 40 participants have accessed drug treatment since July.
Edwards incorporates needle-cleaning techniques into her HIV-education program at New Directions. She and her staff educate people on the street, bring their program into housing projects, and conduct seminars on HIV prevention. Since intravenous-drug users often have a difficult time getting syringes from pharmacies, many rely on the black market. Edwards says drug users get syringes from diabetics willing to sell them and from people with connections at local pharmacies.
Because New Directions HIV program is 100 percent state-funded, it is prohibited from distributing bleach kits. But a New York-based organization distributed some in Memphis last fall. As Edwards recalls, they were quite popular.
Dressed in blue jeans and heels, Edwards stands just outside the open door to the community center at Fowler Homes. She wont let a person walk by without inviting them to come inside the building, where her staff has set up for the afternoon.
Seven years of AIDS outreach has turned Edwards into a hard-core advocate for needle-exchange programs. She has gathered plenty of anecdotal evidence that it could save lives. One woman she remembers in particular could have spared her son from AIDS if she had provided him with a sterile syringe instead of sharing her own HIV-tainted needle with him.
Ive seen it affect little girls, babies, yet people are afraid to talk about it, she says. Our hands are tied from so far up.
As the March deadline for lifting the ban on federal funding for needle exchange approaches, supporters nervously await some word about what Shalala plans to do. Even though needle exchange is favored by an impressive list of advocates, theres a comparatively small but vocal group of adversaries, including some members of Congress and the Clinton admini-strations drug czar Barry McCaffrey, who seem to pose a serious threat. Its not an effective way to reduce the spread of AIDS or the use of drugs, says Kristin Hansen, press secretary for the Family Research Council. It only drives up crime and drugs and sends a mixed message to teenagers.
Shalala has remained mum on the topic. But needle-exchange advocates can look to the polls for encouragement. Several recent polls have shown the public sentiment shifting toward favoring needle-exchange programs. Thats a change from the late 1980s, when at least two different polls found that roughly half or less than half of respondents supported giving sterile needles to addicts in order to slow down the spread of AIDS. Last year, a Kaiser Family Foundation poll found that 66 percent supported it.
Perhaps people are beginning to realize what AIDS advocates, medical professionals, and others have been saying for years: A needle is a small trade-off for saving a life.
Even though RhondA Schultz feels her advocacy for needle exchange has been discouraged, she will not be silent. While she was undergoing training to become an AIDS educator, she says she was inspired by an Ethiopian proverb that hung in the office. It read, He who hides his disease will never be cured.
She hopes it applies to her disease, AIDS, and to the disease of ignorance.
Its a sentiment shared by Sharron Moore Edwards too.
I struggle with this every day, she says. This has become too political. Tennessee is going to have to grow up someday, especially Memphis.
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