Testing, Prevention, and Education

Chapter 8
Testing, Prevention, and Education

HIV TESTING

Voluntary, Not Mandatory

Few issues about the HIV/AIDS epidemic have prompted more controversy than the use of antibody tests to identify people who are infected with HIV. Soon after the enzyme-linked immunosorbent assay test was developed and licensed in 1985, many public health officials supported testing in an attempt to change "undesirable" behaviors that were determining the course of the epidemic (such as male to male sexual contact [MTM] and intravenous drug use [IDU]). Those who favored testing claimed that if a person knew he or she was HIV-positive, the infected person would change his or her behavior. Others argued that aggressive public health education and carefully planned and implemented counseling would be more productive strategies to achieve the desired results, even if people did not know their HIV status.

In the early years of the epidemic, health care officials in the public and private sectors refrained from advocating mandatory testing; instead, they focused on HIV testing that would be performed by physicians for patients they believed to be at risk for infection. In 1990 the House of Delegates of the American Medical Association (AMA) voted to declare HIV/AIDS a sexually transmitted disease (STD). This designation allowed physicians more freedom to decide the conditions under which HIV testing should take place.

In the late 1980s, when the research community announced that HIV-infected, symptom-free people could receive early intervention with azidothymidine (also known as zidovudine) to slow the effects of the illness and delay the onset of Pneumocystis carinii pneumonia, the debate took another turn. Gay rights advocates, such as the Gay Men's Health Crisis Center in New York, began to encourage those at risk for HIV infection to get tested rather than discouraging testing, as the group had previously done. In June 1997 the Center opened its own testing facility. This service continues in 2005 as part of the range of care and support services offered by the Michael Palm Center. The center also offers a twelve-week "harm reduction program" designed to curb risky behaviors such as substance abuse and unprotected sex. The intent of the program is to encourage people to change their risky behavior in a supportive atmosphere of care.

Another controversy surrounding testing concerns reporting HIV-positive patients by name. Every state is required to report AIDS cases. As of December 2003 forty-one states, American Samoa, Guam, the U.S. Mariana Islands, and the U.S. Virgin Islands had implemented HIV case surveillance using the same confidential system for name-based case reporting for both HIV infection and AIDS. (See Table 8.1.)

Only Connecticut and Oregon conduct pediatric surveillance. Washington State implements HIV reporting by patient name to enable public health follow-up; after services and referrals are offered, names are converted into codes. At least six states (California, Illinois, Maine, Maryland, Massachusetts, and Pennsylvania) and Puerto Rico are reporting cases of HIV infection using a coded identifier rather than patient name. In most other states HIV case reporting was under consideration, or regulations enabling HIV surveillance were expected to be implemented. As of 2003 thirty-six states reported pediatric AIDS statistics as part of their confidential surveillance programs.

Critics, including the American Civil Liberties Union, assail name reporting as an invasion of privacy that carries social and economic risks. They claim that any benefit that would result from reporting names could not override the negative consequences (such as ostracism and loss of jobs and health insurance) of being classified as infected. They add that name reporting discourages those at risk for HIV from coming forward to seek testing and timely treatment.

TABLE 8.1
Reported cases of HIV infection, by area of residence and age category, cumulative through 2003
Area of residence (date HIV reporting initiated) Cumulative through 2003a
2003 No. Adults or adolescents Children (<13 years) Total
Note: Includes only persons with HIV infection that has not progressed to AIDS. Includes data from 37 states and from U.S. dependencies, possessions, and independent nations in free association with the United States.
aIncludes persons with a diagnosis of HIV infection, reported from the beginning of the epidemic through 2003.
bConnecticut has confidential name-based HIV infection reporting only for pediatric cases.
cFlorida (since July 1997) has had confidential name-based HIV infection reporting only for new diagnoses.
dPennsylvania (October 2002) implemented confidential name-based HIV infection reporting only in areas outside the city of Philadelphia.
eTexas (February 1994 through December 1998) reported only pediatric HIV infection cases.
fIncludes 812 persons reported from areas with confidential name-based HIV infection reporting, but whose area of residence is unknown. Includes 7 children reported from Oregon prior to the change in 2001 from name-based HIV infection reporting for pediatric cases to code-based reporting for all persons with HIV infection.
Source: "Table 16. Reported Cases of HIV Infection (Not AIDS), by Area of Residence and Age Category, Cumulative through 200341 Areas with Confidential Name-Based HIV Infection Reporting," in HIV/AIDS Surveillance Report: Cases of HIV infection and AIDS in the United States, 2003, vol. 15, Centers for Disease Control and Prevention, 2004, http://www.cdc.gov/hiv/stats/2003SurveillanceReport.pdf (accessed July 18, 2005)
Alabama (Jan. 1988) 501 6,065 45 6,110
Alaska (Feb. 1999) 39 277 2 279
Arizona (Jan. 1987) 510 5,343 56 5,399
Arkansas (July 1989) 183 2,290 21 2,311
Colorado (Nov. 1985) 365 6,295 28 6,323
Connecticut (July 1992)b 1 106 106
Florida (July 1997)c 5,467 31,191 306 31,497
Georgia (Dec. 2003) 52 502 13 515
Idaho (June 1986) 28 429 4 433
Indiana (July 1988) 336 3,985 46 4,031
Iowa (July 1998) 43 465 6 471
Kansas (July 1999) 93 1,120 14 1,134
Louisiana (Feb. 1993) 787 8,030 134 8,164
Michigan (April 1992) 548 6,196 129 6,325
Minnesota (Oct. 1985) 225 3,256 35 3,291
Mississippi (Aug. 1988) 354 4,548 54 4,602
Missouri (Oct. 1987) 467 4,968 51 5,019
Nebraska (Sept. 1995) 48 604 8 612
Nevada (Feb. 1992) 221 3,488 22 3,510
New Jersey (Jan. 1992) 1,361 16,382 423 16,805
New Mexico (Jan. 1998) 71 775 3 778
New York (June 2000) 8,403 34,194 1,868 36,062
North Carolina (Feb. 1990) 1,315 12,453 133 12,586
North Dakota (Jan. 1988) 2 84 1 85
Ohio (June 1990) 786 7,438 89 7,527
Oklahoma (June 1988) 206 2,674 30 2,704
Pennsylvania (Oct. 2002)d 2,665 3,258 45 3,303
South Carolina (Feb. 1986) 539 7,527 108 7,635
South Dakota (Jan. 1988) 18 224 4 228
Tennessee (Jan. 1992) 696 6,812 85 6,897
Texas (Jan. 1999)e 4,292 18,023 375 18,398
Utah (April 1989) 96 687 11 698
Virginia (July 1989) 723 9,555 81 9,636
West Virginia (Jan. 1989) 92 707 6 713
Wisconsin (Nov. 1985) 172 2,508 32 2,540
Wyoming (June 1989) 10 95 1 96
    Subtotal 31,715 212,448 4,375 216,823
U.S. dependencies, possessions, and associated nations
American Samoa (Aug. 2001) 0 1 0 1
Guam (March 2000) 0 60 0 60
Northern Mariana Islands (Oct. 2001) 0 5 0 5
Puerto Rico (Jan. 2003) 951 965 10 975
Virgin Islands, U.S. (Dec. 1988) 25 243 6 249
Persons reported from states with confidential name-based HIV infection reporting, who were residents of other states 421 1,981 151 2,132
    Totalf 33,301 216,486 4,579 221,065

The American Medical Association and other advocates for reporting patients by name claim that it is essential for contact tracing, or partner notification, so that others who may have been infected will obtain treatment and other services. In Iowa, before name-reporting legislation had been adopted, John Katz, the STD/HIV program manager for the state's Department of Public Health, claimed that it was virtually impossible to determine trends without name reporting. Patients have repeat tests, and tests are performed to verify the analytical accuracy of testing labs. An anonymous system can confuse test results when testing is repeated in this way. Katz stated that not using name reporting "essentially leaves us with a big batch of nothing. We can tell how many positive tests have been reported, but I can't tell you how many human beings that represents."

Demographic data are used in states that do not require name reporting. During 1998 the Centers for Disease Control and Prevention (CDC) funded projects in Texas and Maryland that incorporated unique identifiers (the last four digits of the Social Security number, birth date, sex, and race), instead of names, for those tested. While the name-reporting debate continues, there is widespread agreement that testing is most effective if followed by counseling that completely explains the results and their consequences.

Counseling and Testing

Counseling and testing are important components of state and local HIV-prevention programs. Testing at publicly funded centers is free or available at nominal cost. In contrast, testing through a private physician can cost more than $200.

Each year the CDC conducts the world's largest telephone survey to track health risks in the United States. People between the ages of eighteen and sixty-five in forty-nine states and the District of Columbia respond to the telephone survey. Examination of the data from the 2000 Behavioral Risk Factor Surveillance System survey is typical of data obtained and, as of June 2005, represents the most current year for which HIV/AIDS data was obtained.

A median (half the states had more; half had less) of 45.7% of respondents reported having at least one HIV-antibody test; in 1998 a median of 40% of respondents had been tested for HIV. The 2000 survey found the proportions of those who had been tested for reasons other than donating blood ranged from a low of 35% in Minnesota to a high of 65.3% in the District of Columbia. Of those who had been tested for HIV, a median of 86.4% reported receiving the results of their last HIV test; less than one-third of those tested (the median was 32.3%) received post-HIV test counseling.

Contact Tracing/Partner Notification

A by-product of testing is contact tracing, or partner notification. When individuals test positive for HIV, health officials ask them to provide, with the promise of anonymity, the names of those with whom they have had sexual contact or shared needles. The CDC asks counselors to inform contacts if the patient is reluctant to do so and strongly endorses contact-tracing programs, but results vary. States struggling under the strain of numerous HIV/AIDS cases continue to support programs that encourage the infected people to notify partners on their own. Contact-tracing programs in states with fewer HIV/AIDS cases are more likely to contact partners. Many patients who have HIV or AIDS fear that the promises of confidentiality will be broken; others fear retribution from those they may have infected.

Increasingly, states are trying to expand contact-tracing programs of health departments that notify sexual partners exposed to the virus. As an example, since 1995 health department counselors in Missouri's partner notification system have received additional training in teaching skills to reduce risky behavior. CDC-funded demonstration projects such as the San Francisco Bay Area Partner Assistance, Information, and Referral Services, which began in 1998, are trying to determine whether aggressive, confidential partner notification will prove to be an effective HIV prevention measure.

Home Testing

Home HIV tests were developed in the mid-1980s but were opposed by the Food and Drug Administration (FDA) and some HIV/AIDS organizations and health care agencies. The FDA was concerned about telephone counseling for those who tested positive, the accuracy of the tests, and confidentiality. In 1996 the FDA reversed its position, deciding that despite its limitations, the benefits of home testing outweighed the risks.

The CDC claims that significant numbers of people have acquired HIV but do not know it. Many, say public health officials, are afraid of getting tested at a physician's office or public clinic because of the associated stigma. Some drug companies suggest that an HIV-antibody test that can be performed at home may be the only way some of these people will learn their HIV status and argue that more people will then take steps to get treatment and prevent spreading the infection.

Some home tests use saliva, which does not require a needle stick, and others use blood samples. When blood is tested, the patient draws a few drops of blood from a fingertip, places it on filter paper, and mails the paper to a company laboratory, which performs the standard HIV assay. If the results are positive, a confirmation test is performed. An HIV test kit called the Home Access Express HIV-1 Test System, manufactured by Home Access Health, which was approved by the FDA in 1996, remains the only HIV home test kit approved by the agency as of June 2005. Three days after the Home Access Express test kit is received by Home Access Health, results and counseling are available by calling a twenty-four-hour toll-free number and giving an identification code. Home Access claims a greater than 99.9% accuracy rate.

Critics of home testing say that news of HIV infection is not as easy to accept as the results of other in-home tests, such as those for pregnancy and cholesterol. They claim that most people cannot properly prepare themselves for the news that they have a life-threatening disease. They advocate expansion of current testing sites to include mobile vans, sports clubs, and other places that are not exclusively associated with HIV testing, but where in-person counseling could be provided.

Military Practices

The Department of Defense (DOD) regularly screens all members of the armed services and those seeking to join for HIV. Annual HIV testing is required of all personnel on active duty, as well as all members of the reserves and National Guard. In 1995, after two months of debate on Capitol Hill, federal legislators scrapped a discharge provision that would have forced the DOD to dismiss members of the military within six months of testing positive for HIV. Along with HIV infection, a number of chronic conditions, including cancer, asthma, diabetes, heart disease, or complications of pregnancy place troops on limited assignment, precluding them from overseas service or combat.

Debating the merits of permitting HIV-infected personnel to remain in the military, representative Robert K. Dornan, a California Republican, argued that HIV-infected troops constituted a threat to military readiness. He explained that because of the provision limiting the chronically ill to limited duty, they cannot serve overseas and must return to the United States during a time of cutbacks in defense resources. He added that the military could not afford to keep HIV-infected personnel if they were unable to perform all duties.

Responding to Dornan's plea to oust HIV-infected personnel, Frederick F. Y. Pang, the assistant defense secretary for force management policy, said discharging was unnecessary and would not improve military readiness. Pang wrote that if HIV-infected military personnel could perform required duties there was no reason to separate them from others or remove them from the armed forces. Dornan tried to pass a legislative provision (part of the proposed 1997 DOD authorization) that would discharge all HIV-positive military and would cut off benefits to dependents. But the House and Senate voted 399-25 to overturn the discharge law, which had been part of the 1996 DOD authorization.

Since 1985 the DOD has screened all new recruits, students entering the service academies, and those in the college Reserve Officers' Training Corps (ROTC) program. Those who test positive for HIV are not permitted into military service.

Pregnant Women and Newborns

The issue of testing newborns has placed the rights of mothers at odds with those of their newborns. States have kept HIV test results anonymous to preserve a mother's right to privacy. Civil libertarians and some groups that represent women, gays, and lesbians support anonymous testing, claiming that attaching names to test results would start local, state, and federal governments down the "slippery slope" of mandatory testing of adults. They also raise further privacy concerns, contending that once names are known, there is no guarantee they will not fall into the hands of employers, insurance companies, and others who might discriminate on the basis of HIV status.

On the other hand, proponents of disclosure claim newborns that test HIV-positive could be denied adequate medical care because their parents are unaware of their status. Approximately 75% of babies who test positive for HIV immediately after birth do not actually develop the disease. If their mothers breastfeed, however, the babies may contract the infection from their mother's milk.

In May 1996 the U.S. House and Senate passed bills that would cut off federal money for HIV/AIDS treatment to states that fail to comply with the new disclosure requirements. President Bill Clinton signed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Amendment (PL 104-146) requiring mandatory testing of newborns if too few pregnant women agree to voluntary testing. States must now test all newborns for HIV and notify parents of the results. In June 1996 New York became the first state to mandate that health officials tell parents the results of HIV tests that the state routinely performs on all newborns. Before June 1996 parents in New York did not receive results unless they requested them, as was still the case in most states in 2005.

Health Care Workers and Patients

There has been a continuing debate over whether health care workers, who, many believe, have an obligation to inform their patients about their own HIV status, should be required to get tested. Some fear that mandatory testing of health care workers could eventually lead to mandatory testing of patients. In 1998 only patients who exhibited or claimed risk-taking behaviors or requested an HIV test were tested. In the medical setting in the early 2000s, however, all patients were treated as potentially infectious, and treatment personnel were required to wear protective gloves and, for some invasive medical procedures, goggles and masks. These safety measures are known as "universal precautions."

Prisoners

Screening prison inmates for HIV antibodies has been even more controversial than screening people in the general population. Prison officials feel pressure from lawmakers, city and county officials, correctional officers, and even some inmates to perform mandatory screening of all inmates and to make their HIV status known. Testing prisoners raises the issue of spending resources on screening instead of on educational materials to prevent infection. A number of prison systems engage in blind, anonymous prevalence studies where only overall results are made known and individual inmates are not told the test results. The majority of prison systems offer HIV testing for those who request it.

PREVENTION

Critics Fault Programs' Focus and Funding

The objective of HIV prevention programs is to reduce the number of new cases to as close to zero as possible. All prevention efforts are based on the belief that individuals can be educated in a way that will lead to changes in behavior, which will help bring an end to the spread of HIV/AIDS. But many AIDS advocacy groups have long been critical of the ways the CDC has communicated the message. In 1987 CDC officials decided to emphasize the universality of AIDS, instead of focusing its efforts on those most at riskthose who engage in male to male sexual activity (MTM) and intravenous drug users (IDUs). This strategy, according to AIDS advocates, misdirected the spending of available prevention dollars. Today, although the number of infected people outside of these two groups is growing, HIV/AIDS is still largely a threat to MTM, drug addicts, their partners, and their children. Most women with HIV/AIDS are drug users or sex partners of drug users.

This emphasis on the "anyone can get HIV" concept, critics claim, has diverted funds from the target populations with the greatest need for preventive health education. In 1995 the federal AIDS-prevention budget allocated no funds for programs aimed at MTM or for needle exchange programs. The CDC's 1996 $584 million AIDS prevention budget went largely to programs to help fight the disease among heterosexual women, college students, and others who face a relatively low risk of HIV infection. This policy continued into 2003.

CDC Prevention Activities

The CDC believes its role is to prevent HIV infection and to reduce the illnesses and deaths that result from HIV infection by working with communities and other partners. The agency's efforts focus on:

  • Monitoring the epidemic
  • Improving public understanding of the HIV epidemic
  • Preventing risk behaviors among students
  • Preventing and reducing behaviors and practices that transmit HIV
  • Increasing individual knowledge of HIV status and improving referral to appropriate prevention and treatment services

According to the CDC, the most reliable ways to avoid HIV infection or transmitting the virus are abstaining from sexual intercourse, maintaining a mutually monogamous, long-term relationship with a partner who is uninfected, and/or to abstaining from sharing needles and/or syringes in drug use. While seemingly logical, critics contend that the emphasis of the CDC in particular, and of the administration of George W. Bush more generally, on abstinence burdens people with an unrealistic expectation. Critics also point to the insistence on abstinence policies as a condition in United States government assistance for other countries' health programs to be an ill-advised foreign policy intrusion.

The CDC's current HIV Prevention Strategic Plan has as its goal to "reduce the number of new HIV infections in the United States from an estimated 40,000 to 20,000 per year by the year 2005, focusing particularly on eliminating racial and ethnic disparities in new HIV infections." The CDC is devoting 10% of its AIDS budget to prevention efforts through FY 2005.

To accomplish their prevention goal, the CDC has adopted four specific criteria, which are to remain in effect beyond 2005:

  • To decrease the number of people in the United States at high risk of acquiring or transmitting HIV by a minimum of 50%, by providing prevention interventions that are specific and ongoing, and that are based on evidence
  • Increase the proportion of HIV-infected Americans who are aware of their HIV status from the current estimated 70% to 95%
  • Increase the proportion of HIV-infected Americans who can get access to appropriate prevention, care, and treatment from an estimated 50% to 80%
  • Increase the ability of national health agencies, including the CDC, to monitor the incidence and spread of HIV/AIDS, develop and initiate effective prevention strategies, and to evaluate the success of HIV/AIDS programs

The CDC's HIV prevention strategy has four components:

  • To monitor the epidemic so that prevention and care activities can be strategically and appropriately targeted
  • To research the effectiveness of the prevention methods
  • To fund local prevention initiatives that target high-risk communities
  • To develop fruitful linkages with care and treatment programs.

As part of this effort, the CDC stresses cooperation with, and provision of financial assistance and technical support to, state and local health and education agencies, national and local minority organizations, community-based organizations, schools and colleges, and business, labor, and religious organizations. The CDC distributes almost 75% of its HIV prevention funds through grants and contracts, primarily to state and local health and education agencies.

EDUCATING YOUTH

In 2001, 133,725 cases of AIDS in Americans between the ages of twenty and twenty-nine were reported to the CDC. With an average incubation period of ten years, it is likely that most of these young people were infected while they were teenagers. As some people begin having sexual relationships and using intravenous drugs at earlier ages, many fear the number of HIV-positive young people will grow.

Most states offer prevention programs for students in public schools. But youths who are not in school may not have ready access to such programs. Many homeless shelters and local health departments employ roving counselors who seek out these young people to offer prevention information and direct them to health and social service agencies.

Sexual Health Education

Many education programs offer students sufficient information about STDs and HIV/AIDS, but only high-quality education affects behavior. A 1997 review by the Joint United Nations Program on HIV/AIDS (UNAIDS) concluded that effective sexual education programs should include:

  • Focused curricula, clear statements about behavioral goals, a clear picture of the risks of unprotected sex, and ways to avoid it
  • Teaching and practice in communication and negotiation skills
  • Openness in communicating about sex
  • Theories stressing the social nature of learning

The review's conclusions have remained relevant and controversial. Even in 2005 some people do not agree that information about sexual decisions should be offered in public schools, preferring that parents instill their own values in their children. But others point out that some parents never talk to their children about sex and drugs, and school may be the only place a child can get reliable information. According to the National Conference of State Legislatures, forty states, the District of Columbia, Puerto Rico, and the Virgin Islands require HIV/AIDS prevention education. Though laws vary from state to state, and some allow local school districts to decide on curricula, many of these states have one or more mandates determining the material that may be taught in the programs. The mandates range from requiring age-appropriate materials, to teaching comprehensive sex education programs (advocating contraceptive and condom use), to providing programs in which abstinence from premarital sex is presented as the only 100% effective means of preventing HIV/AIDS.

Federal funding for abstinence-only educational programs, which was initiated in 1998, was cut in August of 2005. Proponents of these programs claim that they change attitudes about casual sex, reducing both teen pregnancies and rates of STDs. They also maintain that teaching students about contraceptive and condom use condones, or even encourages, unsafe sexual behavior. Critics of these programs argue that there is no reliable evidence that abstinence-only programs are effective. In addition, they contend that for the five out of ten teens ages fifteen to nineteen who do choose to have sex, lack of knowledge about contraception and condom use will only result in continued teen pregnancies, STDs, and HIV infections.

CONDOM USE

In June 2000 a workshop organized by the National Institutes of Health in collaboration with the CDC, the Food and Drug Administration, and the United States Agency for International Development evaluated published evidence on the effectiveness of latex male condoms in preventing STDs, including HIV. The results of the workshop were published in July 2001 (http://www.niaid.nih.gov/dmid/stds/condomreport.pdf). The publication stresses that studies provide compelling evidence that latex condoms are highly effective in protecting against HIV infection when used properly for every act of intercourse. But it warns that "no protective method is 100% effective, and condom use cannot guarantee absolute protection against any STD. Furthermore, condoms lubricated with spermicides are no more effective than other lubricated condoms in protecting against the transmission of HIV and other STDs."

While latex condom use is still considered a highly effective method of preventing the transmission of HIV and other STDs, the report concluded that abstinence or a mutually monogamous, long-term relationship with an uninfected partner is the "surest way to avoid transmission of sexually transmitted diseases."

Other Forms of Protection

In 1993 the FDA approved Reality, a female condom that serves as a mechanical barrier to viruses. The condom is designed for women to protect themselves from STDs, including HIV. It is made of polyurethane (a resin made of two different compounds used in elastic fibers, cushions, and various molded products) and is unlikely to rip or tear. The condom is prelubricated and is intended for use during only one sex act.

Spermicides, which contain the chemical nonoxynol-9 and are found in various lubricants used in conjunction with condoms in order to kill sperm and therefore further protect against pregnancy, were once thought to be a means of preventing HIV infection. As highlighted in the above-mentioned 2001 report, however, condoms lubricated with spermicides are no more likely to be effective than condoms used with other water-based lubricants.

IMPROVING PREVENTION SERVICES

In March 2000 community planners, health educators, and program directors met at the Community Planning Leadership Summit for HIV Prevention in Los Angeles, California, to share some of the most successful prevention and health education strategies from across the United States. By sharing these new and noteworthy "best practices," state health departments and local community planning groups were able to learn useful and proven approaches they could incorporate into their own programs.

The CDC reviewed the HIV prevention programs and compiled descriptions of them in a publication called Bright Ideas 2000. The publication was so well received that another edition, Bright Ideas 2001: Innovative or Promising Practices in HIV Prevention and HIV Prevention Community Planning, followed, profiling additional programs from several jurisdictions that had not been represented in the previous edition.

The latest edition available as of 2005, Bright Ideas 2001, describes programs that use innovative approaches to reach their target audiences, from an Alabama program that trained high school students to serve as peer group facilitators and counselors to an Iowa strategy to get members to arrive on time for meetingslatecomers were required to sing a song, tell a joke, or dance for the assembled group. A Louisiana program sought to improve its organizational ability to set priorities by using coded maps of STD rates, and in Maine a Web site helped people gain online access to HIV prevention information.

In 2000 the CDC also published the results of a study conducted by its Program Evaluation Research Branch (PERB), which tried to determine which factors help or hinder the efforts of community-based organizations (CBOs) that serve people at risk of acquiring or transmitting HIV. Using one-on-one and group interviews, PERB looked at twenty-six CBOs that varied in terms of target audience, geographic location, and type of services offered.

The PERB study found that some characteristics of the communitysuch as support from city and local health departments; well-organized target populations; strong, supportive families and faith organizations; and well-established social networkswere associated with the success of the CBOs in reaching their target audiences. Characteristics of the CBOs themselves that helped them to reach their target groups included a long history in the community; a strong, clear mission and identity; and a charismatic leader (one easily able to gain the trust and devotion of the group). Effective CBOs also established realistic goals and objectives, developed programs to meet clients "where they are at," and delivered information in an entertaining way. (See Table 8.2.)

Factors that hampered the effectiveness of the CBOs were high rates of poverty, racism, sexism, drug use, homophobia, teen pregnancy, and domestic violence, along with transient client populations. Policies that prevented condom distribution, not enough money to pay CBO staff, and limitations on the accessibility of syringes also prevented CBOs from reaching their target populations. (See Table 8.2.)

SYRINGE EXCHANGE PROGRAMS

Intravenous drug users (IDUs) often share the syringes they use to inject drugs into their body. If an HIV-positive IDU uses a syringe he or she may contaminate it with HIV-positive blood that can then cause the disease in other IDUs who use that syringe. Needle or syringe exchange programs attempt to prevent the spread of HIV in this manner by encouraging IDUs to bring in their used, unsafe syringes and exchange them for new, safe syringes. The reasoning behind these programs is that if people are going to use drugs, at least an effort can be made to make sure they do not contract HIV because of it. Proponents of these programs point out that the spread of HIV among IDUs threatens everyone, as people who contract HIV through drug use can then pass it on to their sexual partners and through childbirth. Federal officials estimate that each day thirty-three people are infected with HIV as a result of IDU. This figure includes IDUs, their sexual partners, and their children.

Despite these arguments, syringe exchange programs are highly controversial because of their connection to drug use. Some see them as helping IDUs avoid the consequences of their actions, or even providing them with the means to continue their illegal activities. In April 1998, after much debate, the Clinton administration decided not to lift a nine-year-old ban on federal financing for programs to distribute clean needles to drug addicts. This means that state and local governments that receive federal block grants for HIV/AIDS prevention are not permitted to use that money for needle exchange programs. Public health experts and advocates for people with HIV/AIDS criticized the decision. Later in 1998 Congress considered even more restrictive legislation that would ban indirect federal funding (such as funding for counseling, medical care, or funds dispersed by city or state) to needle exchange agencies. Regardless, in 2000 five U.S. health groups (including the AMA and the American Pharmaceutical Association) spoke out in favor of needle exchange programs and advised state leaders to coordinate efforts to make clean needles easily available to IDUs.

TABLE 8.2
Factors that help and hinder community-based organizations in reaching their target populations and delivering interventions
Factors that help Factors that hinder
Source: "Table 2. Examples of Factors That Help and Hinder CBOs to Reach Their Target Populations and Deliver Interventions," in Learning from the Community: What Community-Based Organizations Say about Factors That Affect HIV Prevention Program, Centers for Disease Control and Prevention, September 2000
Structural/external Supportive city and health department Police harassment
Well organized target population Limitations on the accessability of syringes
Policies that prevent condom distribution
Poverty
Racism, sexism, drug phobia, homophobia
Cultural norms Strong role of families Distrust of social service providers
Active faith communities Ashamed to talk about sexuality
Client factors Well established social networks High rates of drug use, poverty, unemployment, mental health issues, STDs, teen pregnancy, domestic violence, etc.
Transient nature of clients
Denial/clients tired of hearing about AIDS
Organizational Long history in the community Overly bureaucratic management
Credibility Insufficient support for line staff
Clear mission/strong identity Insufficient infrastructure
"One stop shopping": multi-services Abstinence/no condom distribution policy
Staff Charismatic leader High turnover/vacancies
Flexible work environment Difficulty finding staff that represent target population
Support for line staff Conflicts between staff
Staff represent community Not enough money to pay staff
Commitment/work as a team
Program Needs assessments Unrealistic goals and objectives
Market research Inappropriate strategies for target population
Realistic goals and objectives No meaningful integration of evaluation data
Incentives
Meet clients "where they are at"
"Infotainment"combining education and entertainment
Flexible implementation design

The article "Update: Syringe Exchange ProgramsUnited States, 1998" (Monthly Morbidity and Mortality Report, vol. 47, no. 31, August 14, 1998) summarizes a survey of U.S. syringe exchange program (SEP) activities during 1998. As of 2005 an updated survey has yet to be published. The survey was conducted in October 1999 by the Beth Israel Medical Center (BIMC) in New York City, together with the North American Syringe Exchange Network (NASEN). They mailed questionnaires to the directors of 131 SEPs in the United States who were members of NASEN. (Previous surveys contacted sixty-eight SEPs during 19941995, 101 in 1996, and 113 in 1997.) The BIMC contacted SEP directors and conducted telephone interviews based on the questionnaires. The directors responded to questions about the number of syringes exchanged during 1998, program operations, and services provided.

Of the 131 SEPs, 110 (84%) participated in the survey, but some asked that their data be reported only when considered along with all the data (aggregate reporting), rather than considering each jurisdiction separately. SEPs operated in eighty-one cities in thirty-one states, the District of Columbia, and Puerto Rico. The greatest numbers of SEPs were located in four states: California (21), New York (14), Washington (12), and New Mexico (9). Nine cities had at least two SEPs.

In 1998 the 107 individually reporting SEPs exchanged approximately 19.4 million syringes, up from the 1997 total of 17.5 million. The twelve largest SEPs (those that traded five hundred thousand or more syringes) exchanged approximately 12.1 million (62% of all replaced syringes). (See Table 8.3.)

In addition to exchanged syringes, most SEPs provided other public health and social services. Virtually all offered instruction in preventing sexual transmission of HIV and other STDs; 98% provided male condoms and 73% distributed female condoms. Ninety-nine percent provided IDUs with alcohol pads, 90% offered bleach to use as a disinfectant, and 95% referred clients to substance abuse treatment programs. Other on-site health care services provided by some SEPs included HIV counseling and testing (64%), tuberculosis skin testing (15%), STD screening (14%), and primary health care (19%).

TABLE 8.3
Syringe exchange statistics, 1998
Size No. syringes exchanged per SEP No. SEPs Total no. syringes exchanged % syringes exchanged
Note: SEP means syringe exchange program.
Source: "Table 1. Number of Syringe Exchange Programs (SEPs), Number of Syringes Exchanged per SEP, Total Number of Syringes, and Percentage of Total Number of Syringes, by Program Size CategoryUnited States, 1998," in "Update, Syringe Exchange ProgramsUnited States, 1998," in Morbidity and Mortality Weekly Report, vol. 50, no. 19, May 18, 2001
Small <10,000 30 108,136 1%
Medium 10,000-55,000 26 778,701 4%
Large 55,001-499,999 39 6,398,409 33%
Very large >500,000 12 12,112,281 62%
    Total 107 19,397,527 100%

Helping IDUs Saves Lives

In "Changing Syringe Laws Is Part of Strategy to Help Stem HIV Spread" (HIV/AIDS Prevention, December 1997), the CDC points out that drug users must have access to clean syringes and drug treatment as part of a complete HIV prevention plan. One way to make this happen is to change the drug paraphernalia laws so that clean needles and syringes are available to IDUs. However, many people believe that by doing so the state is allowing drug use to take place, or even worse, condoning it.

The U.S. Public Health Service recommends that IDUs be counseled and encouraged to stop using intravenous drugs, if possible, through substance abuse treatment that includes relapse prevention. Failing this, however, drug users should follow various preventive plans that include:

  • Never reusing or sharing syringes, water, or drug preparation equipment
  • Using only syringes obtained from a reliable source (e.g., pharmacies)
  • Using a new, sterile syringe to prepare and inject drugs
  • Safely disposing of syringes after one use

Despite social and economic obstacles to their success, SEPs have repeatedly demonstrated that they can help change the lives of IDUs. Research reported in "A Drug Abuse Treatment Success among Needle Exchange Participants" (Public Health Reports, supplement 1, June 1998) found that 50% of clients referred for substance abuse treatment entered treatment and 76% completed thirteen weeks of treatment. These findings were especially impressive in view of the programs' clientele: people with more severe drug abuse, more HIV risk behaviors, and more participation in illegal activities than IDUs referred to treatment from other sites.

Legislation in Maine and Minnesota

A 1997 law in Maine (Maine Statute, Title 32, Ch. 117, Sect. 32, Para. 13787-A) permits anyone to legally possess ten or fewer syringes. "Illegal possession" of syringes applies to anyone who knowingly owns or furnishes eleven or more syringes, except those who must self-inject prescription drugs (like insulin-dependent diabetics) and SEP operators, who are not limited in the quantity of syringes they possess. The statute authorizes the state Bureau of Health to establish SEPs and set the rules that will govern them. SEPs must keep track of and dispose of syringes, they must have drug prevention education, and they are required to submit an annual report on the operation of their programs.

Legislation in Minnesota (Minnesota Statute Section 151 Para. 40) modified its drug paraphernalia law so that pharmacists are permitted to sell, and IDUs to buy, ten or fewer syringes. The state's commissioner of health is now required to give pharmacists help with technical issues, such as proper disposal of used syringes and provision of materials needed to make the program work.

Legal Barriers to Federal Funding of Needle Exchange Programs

Regardless of the evidence from a number of sources that needle exchange programs are effective strategies for the prevention of HIV transmission, the federal government, as well as most local and state governments, have not made them legal. They argue that illicit drug use should not be financed by taxpayers. Since 1988 Congress has passed at least six laws that contain provisions specifically prohibiting or restricting use of federal funds for needle exchange programs and activities. The Comprehensive Alcohol Abuse, Drug Abuse, and Mental Health Amendments Act of 1988 (PL 100-690) requires states, as a condition for receiving block grant funds, to agree that funds would not be used "to carry out any programs of distributing sterile needles for hypodermic injection of an illegal drug or distributing bleach for the purpose of cleansing needles for such hypodermic injection."

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