Chapter 4.0 Findings
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In this section, we present major findings from a comparison of the four case studies. We structure this discussion around several key assessment issues:
Who is at greatest risk of becoming infected with syphilis?
What institutions are best able to reach these individuals?
What barriers to mobilizing these institutions have been encountered?
What programs are needed and what innovative approaches have been planned or undertaken to meet these needs?
Before discussing the findings of our study, we wish to emphasize that, unless another source is explicitly cited, the information contained in this chapter is based on our interviews in the eight communities we visited for our case study. These findings represent the beliefs and perceptions of our informants upon which they base their actions to prevent and control syphilis. As such, this is important information. However, it is not necessarily based on data collected from members of high-risk groups or client populations. Our findings should be interpreted in this light.
4.1 Those Judged to Be at Greatest Risk of Acquiring or Transmitting Syphilis
The statistics on the 1990-91 syphilis epidemic showed that African Americans are the demographic group at highest risk of excess syphilis morbidity in the southern states. Those interviewed for this project confirmed that low-income African-American residents of both urban and rural areas are at elevated risk of becoming infected with syphilis. However, interviewees raised the issue of reporting bias in assessing the degree to which syphilis morbidity is truly concentrated in this population subgroup.
Some public health agency staff and community activists feel that morbidity statistics reflect the predominance of African Americans among the clientele of public health department clinics. Our interviewees believe that these cases of syphilis are more likely to be reported to the state health department and included in state statistics than are cases treated by private providers. While each of the case study states has a reporting requirement for both laboratories and physicians, the view among DIS staff in particular is that private providers may be inclined to circumvent the surveillance system by making a general diagnosis without testing and then prescribing a large supply of antibiotics to cover both patient and contacts. Other interviewees argued that private physicians, ever mindful of the potential for litigation, are more likely to order blood tests if syphilis is suspected in order to protect themselves from malpractice accusations.
There is a relatively weak association between substance abuse and syphilis among infected individuals who become known to the health system. In one of the cities we visited, a January 1996 sample of newly reported syphilis cases showed that only 30 percent of the infected individuals acknowledged an involvement in substance abuse. A medical researcher at a university in another of our case study communities told us that, in late 1995, if a woman enrolled in a maternal-child health study tests positive for crack, the chances are only one in four that she will also test positive for syphilis. However, we were told by hospital infection control specialists in two other urban centers that the syphilis cases they observe are usually associated with admissions for overdose or chronic substance abuse and psychiatric evaluation.
This relatively low number of syphilis cases among substance abusers who become known to the system does not tell us much about the relationship between substance abuse and syphilis infection itself. The fact that few substance abusers appear for diagnosis and treatment of syphilis may be one reason why syphilis is difficult to control in populations with a large number of substance abusers.
Almost everyone we interviewed could identify categories or groups of individuals whom they felt to be at high risk of acquiring or transmitting syphilis, but practically no one uses the term "core transmitter" or "core transmitter group" to describe them. Terms used by our respondents included: high-risk population, high-risk group, target population, target group, people at greatest risk, at-risk, and usual clientele.
A handful of public health agency staff in the states we visited had heard of the term "core transmitter," but the only respondents who used the term were public health officials in South Carolina involved in the CDC-sponsored Syphilis in the South project. Even those individuals have switched from using the term "core transmitter" to "high-frequency transmitter," which they believe better characterizes the group under consideration. To the extent that a "core transmitter" group for syphilis exists, the occurrence of repeat infections is likely to help identify group members. Other STDs, especially gonorrhea and chlamydia, show higher rates of repeated infections, while repeated syphilis infections are reported to be relatively infrequent. The relatively small number of individuals treated for repeat syphilis infections are often crack cocaine users.
4.1.1 Scenarios of High Risk
Our evidence shows that many of the risk factors for syphilis cannot be conveyed by the concept of one or more core groups who are the major sources of disease in a population. For this reason, we have moved away from a focus on individuals or groups of individuals in order to look at scenarios of risk in which high-risk behaviors - and thus transmission of syphilis - are likely to occur.
The primary behavior leading to a high risk of syphilis transmission is unprotected sex of an individual or a group of individuals with multiple partners. Other risk factors include patterns of behaviors and contextual situations that place individuals in a position where this happens. In the sections that follow, we discuss contexts in which our interviewees felt that high-risk behaviors are most likely to occur, focusing on the following situations:
Sexual activity that occurs in exchange for drugs,
High-risk sexual activity among adolescents and young adults,
Sexual behavior in correctional facilities,
Unmanaged STD risk among homeless persons, and
Syphilis risk in the male homosexual population.
4.1.2 Sexual Activity in Exchange for Drugs
Many researchers point to the rapid rise of crack cocaine use in southern states in the late 1980s as one of the key elements in the syphilis epidemic. Crack is believed to have come to the region as a combined result of enforcement and market conditions. Stepped-up drug enforcement efforts in South Florida and New Orleans caused narcotraffickers to seek alternative points of entry in the less heavily patrolled rural South. In addition, market dynamics in larger metropolitan areas (New York, Detroit, Chicago, Miami) led smaller scale wholesalers to establish operations in Atlanta, Memphis, and other southern metropolitan areas.
In rural settings, local officials believe there is a strong association between syphilis and crack use, but it is difficult to assess the accuracy of this view. The literature concerning trends in crack use in rural areas is mixed. Several recent studies find crack use to be significantly associated with rural cases of STDs in general (Schulte et al. 1994), HIV (Ellerbrock et al. 1992, 1995), or syphilis in particular (Forney et al. 1992). At least one study acknowledges that crack is only one of a number of factors that contribute to increased morbidity (Thomas et al. 1996). A lack of access to primary health care and concerns about confidentiality in smaller communities may also inhibit people from seeking treatment for STDs.
Newspaper accounts have reported the discovery of rural crack distribution operations in several southern states. However, evidence of crack trafficking and use may be more conspicuous in rural areas, even if it is less prevalent than in urban areas. Although crack cocaine use in rural areas is certainly cause for alarm - officials in one state pointed to a parallel movement of crack use and syphilis morbidity throughout the state - an emphasis on the crack-related risk of STD infection in rural areas may distract from other opportunities for public health interventions.
Our interviewees told us that exchanging sex for crack cocaine, or for the money to purchase crack, is a drug procurement strategy pursued mainly by women aged 18 to 30. These exchanges occur in several types of locations:
Crack houses. "Crack houses" are distribution centers where users come to purchase crack, often remaining on the premises to smoke it. The use of crack houses often evolves from a stage where a small number of users occupy the premises at the invitation of the occupant to a stage with steady traffic at all hours. This eventually attracts the attention of law enforcement officials, and the regulars are of necessity displaced to another location.
Included among regulars at a crack house are women (and some men) who offer to engage in a sexual act in exchange for a portion of the drugs that paying customers purchase. The implications of this form of sex-for-drugs exchange for syphilis infection are not clear. While no data are available from our study on the frequency of different types of sex acts in crack house exchanges, ethnographic evidence from other locales (e.g., Bourgois and Dunlap 1993, Bourgois 1995, Williams 1989) suggests that oral sex is much more common in these settings than vaginal or anal intercourse. However, none of our interviews with STD clinic staff elicited an unprompted observation about an unusual prevalence of oral lesions among female patients.
Truck stops, road-side rest stops, and road-side parks. Truck stops, road-side rest stops, and parks located near highways are another type of location where sex is exchanged directly for drugs or money to purchase drugs. In at least two of the urban settings where such venues were identified by DIS staff, a solicitation might take place in the park or truck stop, with the actual sex occurring in a nearby hotel with rooms to rent by the hour.
Streets, bars, clubs. A third type of sex-for-drugs exchange in urban settings occurs along well-known street segments, either along the street itself (in cars or alleyways) or in bars and clubs. In each urban area we visited, these areas were well known to DIS staff and a frequent target of DIS health education and condom distribution activities. We were left with the general impression that with additional resources, DIS would target these areas even more intensively than they currently do.
A distinction was made by the most informed of our respondents between the syphilis risk from sex-for-drugs exchanges and commercial prostitution. These respondents felt that higher priced commercial prostitutes were not as likely to become infected with syphilis as were crack-addicted women trading sex for drugs or for money to buy drugs. It makes good business sense for commercial prostitutes to remain disease-free, and in each metropolitan setting, we were told that some well-known prostitutes go to the STD clinic routinely for checkups.
The Hollywood image of prostitution - call girl operations, massage parlors, street strolls, and so forth - does not fit rural southern patterns of sexual partnership. If rural residents engage in such activities, they are more likely to do so in urban settings. In our rural study communities, we were told that women were more likely to be involved with a series of short-term partners (serial monogamy) from whom they receive gifts, money, drugs, or other favors. The fact that these women may be engaged in coercive relationships, or having unprotected sex with male partners who may also be involved in sex-for-drugs liaisons, puts them at increased risk for acquiring syphilis.
4.1.3 High-risk Sexual Activity among Adolescents and Young Adults
Teens and single young adults who engage in a series of relationships involving unprotected sex are a risk group often mentioned by interviewees. While syphilis infections among adolescents are acknowledged to be rare - gonorrhea and chlamydia are more prevalent - many respondents expressed the view that unless behaviors change, as these teens grow older their risk of syphilis infection can be expected to increase.
In both the urban and rural locales, respondents noted that teens are initiating sexual activity at an early age and that a substantial proportion of this activity involves multiple partners and unprotected sex. In a survey conducted for the West Alabama Health Services, young teens reported that they have had 25 to 250 sexual partners. The same survey showed that they have a low level of knowledge and many misconceptions about the causes and signs of HIV and other STDs. Youth workers in other settings indicate that teens' lack of knowledge is combined with an outlook of invincibility, making them feel that they do not need to take steps to reduce their risk of infection. Representatives of community-based organizations working with youth attribute a high risk for syphilis and other STDs in part to limited availability of organized recreational activities in southern communities, leading to increased sexual activity among young people.
We were told in several locales that it is not uncommon for teenage girls to have sexual relationships with men who are several years older, men well into their mid- to late twenties. Interviewees told us that the motivation for these young women involves gifts or small amounts of money the men can offer. Our interviewees seldom speculated about the motivation for older men to enter into these relationships, although it was suggested that teens offer a partner who has no children for whom the men would have to provide support. This is contradicted by other statements that younger girls emulate the behavior of their own single mothers who have multiple partners. Definitive evidence on this issue can only be obtained by ethnographic research with adolescents themselves.
An element of coercion may be present in these relationships between young women and older men, making it difficult for the women to insist that partners use a condom or restrict sexual partnerships. One researcher described a protocol that is being tested in which teenage girls are being asked questions like:
Many young people feel real pressure to have sex when they really don't want to have sex. Has this ever happened to you? Tell me about that?
Pilot test responses to this instrument indicate that non-consensual activity is frequent, especially involving older males and younger females. The researcher told us:
A 16-year-old who is involved in a sexual relationship with her 21-year-old boyfriend might say, "If I don't let him do this, he won't stay with me," or, "He gives me things."
As interpreted by the researcher, the 16-year-old benefits from complying with her boyfriend's wishes, not from saying "No." Peer pressure is strong. The researcher quotes a respondent:
I'd like to have a baby, because all my friends are having babies, and I really want one.
In the researcher's view, sexual activity and pregnancy may be yielding important secondary gains for teenage girls.
4.1.4 Sexual Behavior in Correctional Facilities
Inmates at state corrections facilities generally receive an initial screening (and treatment, if necessary) upon entry to prison. As recent disease outbreaks attest (e.g., about 80 syphilis cases in the West Jefferson County Correctional Facility near Birmingham, Alabama, in 1995), male inmates may become infected through sex with other inmates, or through sexual encounters while on minimum-security work details, where they have contact with infected persons outside the prison. These inmates may in turn infect their long-term female partners on the outside upon release, or during conjugal visits while incarcerated.
Across the study sites, screening and treatment of inmates at county and local corrections facilities is much more limited than in the state facilities. Since a significant portion of arrests are for illegal drug possession, trafficking, or drug-related charges, it is expected that some undetermined (but substantial) portion of the corrections population may have been exposed to STDs, including syphilis, through sex-for-drugs exchanges.
4.1.5 Unmanaged STD Risk among Homeless Persons
Social service workers suggested that homeless and nearly homeless persons are a group at elevated risk for syphilis infection. Homeless persons may go for long periods before seeking health care, often waiting until they are seriously ill or injured. They may also have a series of unprotected sexual encounters with individuals of similar health status. More men than women are likely to be visibly homeless, but women without stable housing may circulate with their children among several temporary situations to keep off the streets and out of shelters. Anecdotal evidence of other STDs and hepatitis B in this group suggests that homeless persons should be evaluated as a possible reservoir of syphilis infection.
4.1.6 Syphilis Risk in the Male Homosexual Population
At one time, men having sex with men - especially anonymous, unprotected sex in public venues like parks and highway rest stops - was a major risk group for syphilis infection, as well as for HIV transmission. Research results demonstrate that in the late 1970s and 1980s syphilis was largely an infection seen in gay and bisexual men (Fichtner et al. 1983, Rolfs and Nakashima 1990). Up until the mid-1980s, the gender ratio approached 3 infected males to every infected female. By the end of the 1980s, the ratio had shifted closer to 1:1 (Rolfs and Nakashima 1990).
Some overlap is seen among those at greatest risk for syphilis and those at greatest risk for HIV infection. Almost all of our respondents felt that those individuals at greatest risk for syphilis infection were also at risk for HIV infection because many of the risk behaviors are the same for both diseases. However, public health officials in Mississippi and South Carolina said that current co-infection rates are low, between 1 and 4 percent. One respondent with experience in the HIV clinic at an urban public hospital said that "over 50 percent of HIV-positive African-American males were [RPR] positive for syphilis." This respondent, and others to whom we spoke, expressed the opinion that, although they do not self-identify as homosexual, a significant number of African-American men engage in bisexual behaviors, possibly creating opportunities for further co-infection.
4.2 Institutions Most Likely to Reach Those at Greatest Risk
In the communities we visited, only the health departments were dealing directly and specifically with the prevention and control of syphilis. Other organizations with which we came in contact were working to prevent STDs on a broader basis or were focused on preventing HIV infection. However, at each site, interviewees identified ways to make the current institutional responses more effective at the level of the public health system, the broader social support system, and the community as a whole. Respondents also identified institutions currently not involved in disease prevention and control activities that have the potential to reach those at greatest risk.
Below we discuss these institution grouped according to the following broad categories of activities for which they might be mobilized: (1) disease control activities, (2) syphilis prevention activities, and (3) community-based health promotion activities. Some of the institutional types appear in more than one category.
4.2.1 Disease Control Activities
Disease control includes activities aimed at identifying and treating persons already infected with syphilis, including their contacts. These activities include information and referral, screening, contact tracing, and treatment services provided directly to infected persons, as well as surveillance systems to monitor the performance of disease control efforts.
Disease control programs are undertaken mainly by public health department-operated STD units. To a much lesser extent, other health care providers perform STD screening and treatment or provide testing and treatment for infected persons in a more general context of reproductive health.
Public STD clinics. In all of the urban settings we visited, the public health department operates an STD clinic that manages a program of STD diagnosis, treatment, and control. This clinic serves as the administrative operations center for contact tracing, partner notification, and surveillance activities. A public health clinic is located in each of the rural settings included in this study, but these are not specialized STD facilities and are not all co-located with the administrative operations center for a rural multi-county public health district.
In three of the urban settings (all but Jackson, MS), the main STD clinic is located in the same building or building complex as are other clinical facilities (e.g., maternal and child health, immunizations) from which referrals to the STD clinic might be expected. The clinic in Jackson is located in a shopping center close to several public housing projects and other residential areas where morbidity has been high. Satellite STD clinics are located in outlying counties included in the metropolitan Montgomery and Columbia areas, but not in the Memphis or Jackson areas.
Where infected persons have a choice of treatment facilities, patients with repeat infections may not be detected if there is no routine mechanism in place for infectious disease specialists in different facilities to communicate information about persons with repeat infections. None of the public health facilities, in either the urban or rural settings, has an electronic mail or electronic data exchange link with public or private hospitals in the area to facilitate the transfer of medical records to the public health staff for partner notification and surveillance purposes. Nor do health district offices have an electronic means for exchanging records with the state-level STD prevention and control program.
Federally qualified primary health care centers. Other health care providers offer some syphilis diagnosis and treatment services. Federally qualified primary care centers operate in all of the settings we visited, offering a wide range of services to low-income residents on a sliding-fee basis. STD screening and treatment services are provided by these centers, and DIS staff work closely with the staff at primary care centers to follow up on contact tracing.
Women's reproductive health clinics. Planned Parenthood or other non-profit organizations emphasizing women's reproductive health care operate clinics in each of the urban settings except for Jackson. These clinics generally serve a patient population of college students and young adults who do not have employment-related health care coverage. These organizations offer STD screening and treatment services but report that few patients request these services.
Hospitals and emergency rooms. Some low-income residents in Jackson, Columbia, and Memphis seek health care at the emergency room of a local public hospital and may present information or symptoms that indicate testing for STDs. DIS staff work with the infection control staff at these hospitals to obtain records for contact tracing and partner notification. Montgomery no longer has a public hospital, but three private hospitals in the area have agreed to a rotating "ER of the Day" designation to more equitably distribute the ambulatory emergency room patient load. The absence of a mechanism for coordination among infection control specialists at these three hospitals leaves it up to the DIS staff to detect persons with repeat infections whose treatment rotates among emergency rooms.
Veterans facilities. Each urban setting we visited had a medical center operated by the federal Department of Veterans Affairs (VA). These centers each have an identified patient population drawn from a broad geographic region encompassing both urban and rural settlements. STD screening and treatment services are provided to VA patients, and center staff report that a large portion of patients with early syphilis are psychiatric admissions seeking treatment for problems derived from substance abuse.
Private care providers. Private care providers are another source for syphilis testing and treatment. Until recently, rural public health clinics referred individuals who tested positive for syphilis to local private physicians for treatment. Standing orders have since been implemented allowing public health nurses to administer bicillin shots without the presence of a physician. In urban areas, private practices generally report few syphilis cases among their patients, either because patients with STD symptoms avoid bringing these to the attention of their personal physician or because of the hesitancy of private physicians to order diagnostic tests to confirm suspected cases.
Corrections facilities. Three of the urban settings (all but Memphis) have a nearby state corrections reception and referral center that screens male and female inmates after sentencing and before they are placed in their assigned prison facility. STD screening and treatment services are provided by these reception centers, and the corrections authorities work with DIS staff to support contact tracing and partner notification activities outside the prison system. Screening of inmates incarcerated in local and county jails does not appear to be undertaken on a systematic basis in any of the settings included in this study, except for Montgomery, where the county jail has a staff nurse on site trained by the Health Department to screen inmates.
Community-based organizations. Community organizations formed around health issues are sources of referral for syphilis control services. In each of the urban settings, the public health agency has a close working relationship with a community-based group organized around HIV/AIDS prevention and treatment. The community-based group either provides HIV testing and clinical services to HIV+ persons and persons with AIDS, or refers these individuals to the public health agency and other providers.
4.2.2 Syphilis Prevention Activities
Syphilis prevention refers to activities directed at altering behavioral risk factors so that syphilis infection and transmission are avoided. Prevention includes health education, programs to reduce high-risk behaviors, and prevention services.
In all of the sites included in this study, institutions are in place to provide health education, outreach, and prevention services to those at risk of becoming infected with syphilis as well as to the community as a whole. Urban settings generally have a diversified set of specialized organizations engaged in these activities. Urban community-based organizations are more likely than their rural counterparts to maintain diversity by focusing their efforts on a single, well-defined problem; by drawing on their own sources of support; and by maintaining their own organization. They may be "top-down" bureaucracies or participatory consensus-based coalitions. In small towns, organization likely to reach those at risk are more difficult to separate from one another, since the same people tend to be involved in all of them as part of organized responses to an ongoing stream of events in the community. Access to individuals at risk of syphilis and other STDs is more likely to be effective if efforts can be linked to church, schools, and other community organizations.
Public health agencies. Public health agencies generally have staff qualified to provide health education and prevention services. However, as measured in resources invested and specific steps taken to free up staff time for such services, health education and health promotion are secondary to disease control activities. At each site, individual staff members identified activities they have undertaken with schools, churches, and other community groups, often on a voluntary basis. We were frequently told that outreach and education were more centrally featured by the public health agency in the past, but have been given a lower priority in the face of budget restrictions.
Federally qualified primary health care centers. Federally qualified primary health care centers, in both urban and rural areas, often have their own health educators, school-based clinics, and other activities to support prevention messages.
Private providers. Primary care providers are also sources of health and patient education, and were frequently named as a credible source of factual information about the efficacy of specific risk reduction steps and the consequences of becoming infected with syphilis and other STDs. The extent to which health care providers themselves consider this an important function is a significant issue that cannot be deduced from our data.
Substance abuse treatment centers. Substance abuse treatment centers generally address their clients' health status holistically, rather than focusing exclusively on detoxification and behavior modification. In the urban settings we visited, these centers are unable to keep up with the demand for their services. Substance abuse treatment service centers are unavailable in the rural settings we visited, except for Orangeburg County (South Carolina), by far the largest of the rural counties in the study.
Schools. School districts were identified as the main setting through which to reach children during their formative years with age-appropriate information about reproductive anatomy and physiology, pregnancy and contraception, and reducing the risk of sexually transmitted infections. Each of the states involved in this study has enacted comprehensive health education legislation that sets general curriculum objectives but authorizes local school districts to decide whether to enact curricula that meet these objectives. As a result, considerable variability is found among school districts with respect to how much health instruction students receive. In addition, a substantial portion of the school-age population in these four states is not enrolled in public schools, and private schools are not subject to the health education laws.
Religious institutions. Churches may be the single most influential set of institutions in the South in influencing social norms and behavior, both in urban and rural settings. Public health agencies and community-based organizations have attempted to involve churches in STD/HIV prevention activities with varying degrees of success. Churches throughout the South have instituted a number of relevant programs, such as HIV/AIDS support groups, teen peer counseling services, activities to promote teen-parent communication, women's support groups, training for lay health workers, services for the homeless, residential centers for substance abuse treatment, and financial support for prescription drugs. However, a limitation of relying on churches to deliver STD prevention messages can be religious prohibitions against presenting the sexually explicit information needed to interrupt the transmission of these diseases effectively.
Academic institutions. University- and college-based research, outreach, and education efforts can be important. Institutions of higher learning are located in all of the urban settings, and in or near each of the rural settings included in this study. Affiliated with each of these institutions are public health researchers and health education specialists who, generally, are already serving their own school populations through the Student Health Service and nursing programs. Most also have faculty and research associates who work with nearby communities in pilot interventions, teacher training programs, and on-campus continuing education programs for local professionals. In addition, campus fraternity, sorority, and alumni organizations frequently sponsor community service activities, recreational activities, health fairs, and "Big Brother/Big Sister" mentoring programs for youth and other nearby residents.
Public housing authorities. Some Public Housing Authorities feature youth activity programs with a health education emphasis (e.g., messages targeting pregnancy prevention and avoiding substance abuse) and have collaborated with local public health agencies to sponsor satellite clinics, health fairs, and clinic transportation services.
Community-based organizations. Finally, community-based social services and advocacy organizations - specifically those targeting youth, gay and bisexual males, those in need of help with substance abuse, women involved in violent domestic relationships, and the homeless - are important sources of support in delivering prevention messages to high-risk populations. These organizations tend to be found in the urban (and some rural) settings. They usually have been formed around a particular problem, issue, or task.
4.2.3 Community-Based Activities
In many of the communities we visited, we were referred to organizations seeking to address the root causes of poverty and community underdevelopment that undermine efforts at disease control and prevention at every turn. These organizations are not necessarily thought of as engaged in health promotion and, by themselves, will not cause the reservoir of endemic sexually transmitted disease to recede. However, they are an important component of community-wide efforts to bring syphilis (and any other health problem) under control.
To make clinical services more accessible to those who need them most, and to target interventions where the risk of continued transmission is greatest, requires that some basic public systems (e.g., housing, transportation, education, public safety, utilities) are intact and that an accumulated distrust of the public health system is at least reduced, if not altogether eliminated. For example, there is a broader significance when the Jackson-Hinds Comprehensive Health Center turns an abandoned inner-city shopping mall into a community medical center, and when Habitat for Humanity sponsors housing rehabilitation and construction for first-time homeowners in Columbia, Montgomery, and Memphis. These investments have the potential to become anchors to which further developments can attach themselves and eventually create sufficient local demand to justify more accessible health care facilities and to address the public health deficiencies marked by syphilis morbidity (cf. Kilmarx and St. Louis 1995).
Many of the same institutions involved in implementing syphilis prevention activities are also trying to gain some purchase on the root causes of poverty among southern African-American communities. Efforts aimed at effecting community changes that support health promotion appear to have two key underlying premises: (1) underdevelopment in inner cities and rural areas is complementary to the development of suburban and exurban areas; and (2) interorganizational collaboration is necessary to transcend narrowly defined policy domains and geographic boundaries.
The need for interorganizational collaboration to address complex systemic changes was recognized in each of the communities we visited, in both urban and rural settings. In rural settings, collaborations involving public health agency personnel tend to be more easily established, at least in part because of a less elaborate (and less specialized) set of formal organizations. In the urban settings, the public health agency administrators and managers are involved in collaborative activities with a series of social service agencies and community-based organizations. At the staff level, collaboration appears to be more uneven, often dependent on the strength of individual staff members' personal commitments and energy, and not necessarily supported by job descriptions or other ways in which staff expectations are communicated by management.
4.3 Barriers to Reaching Those at Greatest Risk
A number of barriers were identified that must be overcome to reach those at greatest risk of syphilis infection more effectively and to prevent others from becoming infected. In this section we discuss:
Restrictive local norms about public discourse on issues of human sexuality,
Distrust of the public health system among African Americans,
A low priority of health relative to other issues of poverty in the community,
Limited access to and utilization of STD prevention and control services,
Inadequate recruitment and preparation of public health staff, and
Limited organizational collaboration and coalition-building.
Restrictive Local Norms about Public Discourse on Issues of Human Sexuality
Prevailing local perspectives about how to discuss sexual activities appropriately in public are part of the political context in which STD prevention programs must operate in the South, and they are unlikely to change in the near future. Public discussion about human sexuality is enormously complicated in the settings we visited. Church, government, schools, race, health care, family, television, movies, music - it is much easier to separate these issues from one another on paper than it is in real life. In real life, relationships are embedded in several domains that may have widely disparate values with regard to sexuality.
We heard much about the dominant authority of the local churches in southern communities. We were told that the resistance of churches to public discussion of sexuality was coupled with an unwillingness to acknowledge a disparity between official church teachings and some congregants' sexual behaviors. The opposition of churches to discussion of sexual issues is reinforced in the political arena, as candidates for elected office - including school boards - are judged by members of churches on the basis of their agreement with religious teaching. This in turn restricts the content of public school health education curricula. Church leaders, school officials, and some parents believe that to mention condoms is to condone and even promote sexual activity among youth.
We were struck by the creativity with which local health educators have approached even the most reluctant authorities, relying frequently on the strength of personal relationships to persuade pastors, organization boards, school officials, and the like to reconsider an inflexible resistance to more open and frank discussion of sexual issues. Health educators and outreach workers frequently remarked that they were discouraged by the difficulties and limitations they encountered in approaching authorities. Just as frequently, however, they acknowledge that their target audiences are far more receptive than the gatekeepers who seek to shape and limit public dialogue on sexual issues.
Some flexibility has been introduced when issues are placed in a more encompassing context; for example, when sexual relationships are considered in the broader context of general health promotion. Messages about sexuality directed to young people are more acceptable when the legitimacy of abstinence-based messages is acknowledged and when issues of sexuality are addressed in the context of social relationships and personal growth and development.
Distrust of the Public Health System among African Americans
From our interviews, it is clear that a lack of trust is still a formidable barrier to reaching African Americans with testing, treatment, and health education activities. While the legacy of the Tuskegee study is certainly in the background, distrust is not due solely to this factor. Not very many people in the African-American community know specifically how study managers withheld treatment from the Tuskegee study participants. However, the name itself is a reminder of the injustices that black people have experienced. In one respondent's words, "the public health authorities are out to get blacks, they (the public health authorities) are not to be trusted."
Several observers suggested that the state health departments are perceived by blacks as mainly white institutions. Most key leadership positions within the departments are occupied by whites. Relatively few district health officers throughout the four states are African American. People within the health departments are aware of this perception. They recognize that most management positions are held by whites. Health department officials with whom we spoke frequently acknowledged that their department does not have a good reputation for treating STD patients respectfully.
Another trust-related issue surfaces in the rural areas. Community activists and DIS staff in all of the rural communities reported to us a local perception that the health department facilities do not adequately protect patients' confidentiality. In the small towns, where most people know each other, some patients with syphilis are said to be embarrassed to seek treatment because clinic employees are neighbors, friends, and relatives. There is the fear that people seeking other services, such as WIC, will see them in the waiting room, guess why they are there, and possibly make this information known around town.
Low Priority of Health Relative to Other Issues of Poverty in the Community
The states we visited vary with respect to the strategic priority assigned to STD prevention. For the Mississippi Department of Health Services (MDHS), treatment and control of syphilis infections are seen as important near-term health care priorities. The current focus heavily emphasizes treatment at the expense of prevention initiatives and longer term organizational development issues. In Alabama, the Health Department clearly emphasizes a "medical" model of diagnosis, treatment, contact tracing, and surveillance, without significant attention to the complex behavioral and infrastructural elements considered outside the Health Department's domain. Syphilis treatment and control are given relatively high priority by the Memphis/Shelby County Health Department. As with the other metropolitan areas, the main focus is on surveillance and contact tracing, while prevention and education receive less emphasis.
At the community level, we found that STD prevention and treatment take a back seat to other health care needs. Prenatal and neonatal care are seen as more pressing problems. Cardiovascular disease, teen pregnancy, diabetes, and cancer are problems identified especially within the African-American community. In one rural county, we heard from a community activist that the health effects from industrial contamination should rate a higher priority than STD management.
More generally, we found throughout the rural areas we visited that local residents do not appear to place a high priority on health issues in the face of other urgent poverty-related problems. Between 30 and 60 percent of the households in each rural county included in this study live below the poverty level. For many people in such circumstances, the difficulties one faces - such as unemployment, illiteracy, general economic decline, a substandard educational system and limited basic primary health care - push health issues farther down on the priority list. With so many unmet basic needs, STD prevention is not a top priority, either for individuals or for the population as a whole.
Local leaders hope that economic improvements will trickle down to the rural areas, due to casino development in Tunica County, the growth of the nearby Montgomery metropolitan area in Lowndes County, and a generally strengthening regional economy that may benefit agricultural areas like Orangeburg and Humphreys Counties. If these improvements do make a difference in rural communities, public health issues might receive a higher priority as other local problems are reduced or eliminated.
Limited Access to and Utilization of STD Prevention and Control Services
Some of the barriers to reaching those at greatest risk of syphilis infection involve obstacles to access and utilization of STD prevention and control services.
Staffing. A shortage of physicians, especially in rural areas, places heavier demands on other clinic staff. Professional standards that limit the services that can be delivered by mid-level professionals may restrict services that can be provided on a regular basis in small clinics.
Transportation. Transportation to clinics for testing and treatment is identified as a barrier in both urban and rural areas. In urban areas with a central STD clinic location, our main impression is that the clinic sites are as accessible via public transportation as any location, but that bus service has declined substantially in recent years and shows few signs of improvement.
For some, especially in rural areas where distances are long and public transportation service is limited, lack of transportation is a barrier to seeking health care until symptoms are judged to be serious. This can be an impediment to preventive medical care. Even when people pay relatives or neighbors to take them to a health care facility, they find it difficult to return for follow-up visits.
Satellite clinics. Establishing satellite clinics involves a tradeoff between improved accessibility on the one hand, and additional capital costs accompanied by reduced staff productivity on the other (in cases where the same staff must serve multiple sites). Even when the decision is made to improve accessibility by establishing a satellite location, the experience has been mixed. Improved access through highly localized services does not assure utilization. One must make people aware of the services available and the value of using these services. In a Memphis housing project, for example, a pilot project ended in June 1995 with the closure of a satellite facility after 18 months. After initial interest in the satellite facility, residents' attention flagged, only to be piqued again with "blitz" activities. This suggests that long-term satellite programs may not be appropriate in all instances.
Hours. Operating hours at most public clinic sites do not easily accommodate working peoples' schedules. For women especially, finding child care is an obstacle to be overcome in seeking a clinic appointment.
Costs. For some patients, we were told that the cost of services is a subtle barrier. Most of the federally qualified community health centers, and some of the public health clinics, have a modest co-payment or a sliding-fee scale for STD testing and treatment. Yet the cost of a clinic visit and blood test, however modest, may be enough to discourage teenagers and those living in poverty from seeking care.
Substance abuse treatment facilities. Syphilis prevention for substance abusers may require access to both residential substance abuse treatment and after-care to break the cycle of addiction and exchanging sex for drugs. In every metropolitan area, we were told that facilities for residential drug treatment are extremely limited; most people are admitted to outpatient treatment before arriving at a residential treatment center. Availability of treatment services for women is even more restricted than for men, as women often have issues about child care during residential treatment. Because of difficulties with transportation, outpatient treatment is not a practical consideration for rural area residents. For those from rural areas who manage to make it into a residential treatment program in urban settings, access to after-care programs is especially difficult.
Lack of awareness of services. Some categories of at-risk individuals may simply be unaware of services offered. A 1993 survey by the Mississippi Department of Education, "Youth At Risk," indicated that 75 percent of all teens surveyed did not know how to access health services. They did not know where to go for an exam, nor did they know where to go to obtain condoms, family planning advice, or free testing for HIV/STDs (Mississippi Department of Education 1993).
Restrictions on use of programmatic funds. Barriers to service utilization sometimes result from inconveniences created by restrictions on the use of certain program funds. The same patient must schedule multiple appointments, often serially, to see different clinics for different types of service. A similar barrier to service utilization may be created by the use of stand-alone facilities dedicated to STD/HIV treatment. Qualitatively, this is seen by some as no different from the Health Department's "treatment days" for STDs, which are known to put off clients concerned about their health status becoming more publicly known.
Inadequate Recruitment and Preparation of Public Health Staff
The public health care sector has a difficult time competing for trained staff in southern states because better pay and working conditions are often available in the private sector. Recruitment difficulties can result in barriers to service, as positions remain vacant.
In one rural area we visited, our respondents described a pattern of rotating private physicians, who stay just long enough to fulfill an education-related obligation or to obtain their US citizenship, and then move away. Under such circumstances, it is difficult for local residents to establish any relationship at all with a health professional, and it is equally difficult for physicians to gain the trust of their patients.
The staff who are recruited may not be matched to the patient population in a way that overcomes trust and confidence barriers. We were told about a popular perception that clinic staff members are mostly white, while most patients are African American.
Clinic staff attitudes and the waiting-room environment may discourage African Americans from seeking testing and treatment. Patients report feeling they are treated with disdain, although it is sometimes difficult to separate concerns about race-based attitudes from concerns about the stigma associated with STDs. Still we were told that in many instances, clinic staff display a negative attitude towards patients who present with STDs. We were also told of instances where nurses do not follow standing orders for syphilis treatment, and of instances in which female nurses were not comfortable conducting uro genital tract exams of male patients.
The pattern of rotating physicians is not likely to change in the near future, placing greater responsibility for continuity of service on the shoulders of nurses, physicians assistants, and other health care professionals who staff local facilities.
Limited Organizational Collaboration and Coalition-Building
Public health agencies in the localities we visited are, at one level, actively collaborating with other organizations - generally where it further serves treatment, contact tracing, and partner notification objectives. In attending to outreach and education objectives, however, these agencies appear to us for the most part to be more removed, either pursuing separate programs without engaging community-based groups that promote prevention activities or, if engaged, then mainly not in a central leadership role.
There are barriers that limit public health agency collaboration with community-based groups to pursue outreach and prevention objectives. In some instances, the community-based groups themselves are unstable or altogether absent. In Jackson, for example, a small cadre of energetic, resourceful, and dedicated activists maintains an informal institutional alliance that covers many important bases. The daily grind of coping with inner-city poverty dissipates energy, however, and distracts from neighborhood organizing. Due to at least two decades of white flight, the city is filled with pockets of shotgun houses in dilapidated condition. Most are owned by absentee landlords and occupied by poor tenants who are reluctant to complain for fear of eviction. In short, for many of the city's neediest areas, no "neighborhood" exists to link with counterparts and direct public investment resources where they could make a significant difference.
In metropolitan Columbia, Montgomery, and Memphis, informal and formally instituted collaborations are better established, joining together organizations and agencies from health care, educational, church, housing, and criminal justice and law enforcement domains. The Memphis/Shelby County Health Department has been particularly active in establishing informal network ties with organizations working with STD prevention and control, including criminal justice and mental health agencies, and community-based organizations. The presence of these collaborative efforts is evidence that consensus can be built around issues that are important to the community. Syphilis has not been an explicit focus of organizing activities, but HIV/AIDS and teen pregnancy prevention have been.
4.4 Innovations in STD Control and Prevention
At all of the sites we visited, we were told of innovative disease prevention and control strategies that are in the planning stages or have already been implemented. Innovative disease control measures are largely the province of public health agencies, while the prevention and community-level innovations generally involve collaboration between public health agencies, other government agencies, and community-based organizations. Not many of the latter innovations specifically address syphilis. Yet these activities warrant further attention, both because of the work they are doing and because they could be effective conduits for further interventions relating to syphilis and other STDs.
Innovative Disease Control Measures
While many aspects of clinic and field operations are prescribed by treatment protocols, sufficient latitude for management innovation exists to improve syphilis and other STD control. We discuss several of these here.
Targeted DIS assignments. The Disease Intervention Specialists (Public Health Representatives in Alabama) are key to productive contact tracing and partner notification. Although it seems like a straightforward management decision, the organization of DIS staff activities by geographic area and/or institutional domain is an important innovation. For example, in Richland County, one staff member works with the area's Department of Mental Health facilities and the west side of Columbia. Another works with the military base and several housing projects. Another works with prison facilities and the congenital syphilis cases that appear in metropolitan area hospitals, while another works with the portions of the regional district located outside of Richland County. This organization of staff assignments deepens the specialized knowledge that DIS possess of the populations with which they work and facilitates the development of long-term relationships with cooperating institutions.
Better integration of STD control with other clinical services. One approach to overcoming barriers to mixing of program funds is to integrate a suite of services into a single clinical facility. A program is in the planning stages in Columbia, South Carolina, to combine family planning, WIC (Women, Infants, and Children, a nutrition and health program), and STD services into a Women's Health Center. The Health Department STD Clinic will remain but will primarily serve male patients. This reorganization will separate the younger teenage female patients visiting the Family Planning Clinic from the older males who make up the STD Clinic patient population. This will make the waiting room more comfortable for young women.
Improvements in integrating training. Departures from program-specific training approaches to institute cross-program training for health workers promises to weaken barriers to inter-organizational collaboration in meeting the needs of high-risk populations. States are turning to the use of a centrally located STD clinic for a statewide staff training center. This has the benefit of promoting informal networking among STD clinic staff throughout the state. In other cases, public health agency staff are providing specialized training (1) to state and county corrections authorities for inmate screening and to introduce STD information and referrals in pre-release counseling for inmates; and (2) to substance abuse treatment center staff to accomplish client screening.
Recognizing the role of domestic violence and coercive relationships in STDs. Public health researchers and agency administrators point to innovative work with primary health care protocols, women's support groups, and other steps to increase attention to coercive sexual relationships. While there is no evidence that coercive relationships cause syphilis, some of our informants believe that there is an association between the two. A woman in a coercive relationship may not be able to persuade her partner to wear a condom or to control her partner's involvement in multiple sexual relationships. In Montgomery County, clinic-specific protocols have been created to help recognize domestic violence - STD clinics have a protocol tailored to their work; the maternity clinic has a protocol tailored to theirs. All the "protect yourself" prevention messages being produced for reducing risk of sexually transmitted infections are beside the point if attention is not also paid to enabling women to see how they can have a choice in protecting themselves.
Complementary school- and community-based instruction. A common theme among those with whom we spoke is the need for more widespread education on STDs and related health issues. Discussion of sexuality and STDs in schools is very limited, and we were told by a number of observers that parents are not educating children outside of school, leading to continued high rates of teenage pregnancy and STDs. The consensus is that reproductive health education is needed in both schools and homes.
In urban and rural areas alike, we were told that youth should receive age-appropriate health and sexuality education in the schools, beginning with basic hygiene in the elementary schools, and moving to issues of pregnancy prevention and STDs in junior and senior high school. But it was also agreed that parents and families must be involved if the information is to be translated into behaviors. From this, many respondents suggested educational training courses geared specifically for parents, teachers, and community leaders, so that these key individuals would have the proper information and could feel more comfortable presenting it to the youth.
Using local resources to deliver the prevention message. The most obvious local resource available to deliver prevention messages are community coalitions made up of a broad range of local leaders capable of reaching the target population on a variety of poverty issues. In rural areas, two different models of coalition-building are apparent. Highly localized organizing, town by town, can be seen in the Mississippi Delta counties. We encountered one example of this local-level organizing in Isola (Humphreys County), Mississippi, where a community planning group has been formed by local leaders to address the needs of the residents. The group is exploring ways to purchase two adjoining properties in Isola to build a community center, which would be used to house GED and job training, recreation, exercise, and day care, as well as health education programs. A district-level public health official has been instrumental in helping this community group organize their efforts and seek funding sources.
Combining resources across several counties is another form of rural coalition building. The Orangeburg-Calhoun-Allendale-Bamberg (OCAB) Community Action Agency in central South Carolina is a well-regarded participant in general health promotion activities, although syphilis is not as high a priority as teen pregnancy prevention, maternal and child welfare, and HIV prevention. OCAB administers Headstart programs in its four counties. It also collaborates with a community organization called AIDS Busters to train teen peer educators for community and street-based HIV prevention.
The "natural helper" model, already being applied for other health issues by university-based researchers in rural Alabama, can be highly appropriate for increasing local knowledge about STDs and disease prevention. The main idea here is to train key members of communities to serve as local experts and resources on health promotion issues. This is a decentralized approach to health education and can be especially effective in rural minority communities, where trust of the messenger is very important. Local experts can become sources of information and skills for others in the community, and can train others.
Health fairs are hardly innovative; they were mentioned by several respondents as an activity undertaken more frequently in the past, but scaled back today due to funding restrictions. Re-introducing them offers opportunities for broadcasting general health promotion messages, and more specifically, a chance to introduce the subject of STDs in the less controversial context of education, screening, and referral for a broad range of health issues. Trained community leaders ("natural helpers") could be used effectively for STD-related health and prevention messages at these health fairs.
Integrating syphilis prevention with life skills education. Many respondents mentioned that training in self-esteem and personal efficacy building is needed in combination with health information, so that young people can make more thoughtful choices about engaging in activities that could put them at risk for diseases. Young people need instrumental skills to decide about their sexual activity, such as communication, decision-making, and conflict-resolution skills.
Others to whom we spoke, especially in the rural areas, said that recreation programs are needed for young people and that these programs need to be available every day after school, not just occasionally. Reliable transportation is needed to bring youth to and from such programs. This type of program must be "sold" to the teens, who should also feel they have input into its design. Such recreational programs offer both an alternative to sexual experimentation and a venue for reaching youth with STD and pregnancy prevention messages.
A number of programs we visited serve as an effective setting for teaching life skills, parenting skills, and sex and health education. Several church-based youth programs employ this same encompassing approach, but broader replicability involving other churches would probably require special dialogue with ministers and others in the church hierarchy to review the need for frank and open discussion with teens about such issues as sexuality, pregnancy prevention, and sexually transmitted diseases.
Performing and utilizing outcome evaluation. Professional evaluation specialists in Montgomery pointed out to us that formative and outcome evaluation components need to be built into any training programs to enable program funders and implementors to distinguish effective from ineffective activities and to facilitate productive use of scarce financial resources.
In several of the sites we visited, public health agencies are collaborating with agencies and community-based organizations whose main mission is in some domain other than health services. Current efforts to mobilize community infrastructure to achieve short-term reductions in syphilis morbidity can support community efforts to address other fundamental problems if these collaborative relationships can be maintained and broadened.
Building trust. Specific steps are being implemented in at least two of the states we visited to overcome perceptions of the public health departments as "white" institutions, and all four states have embarked on improving their "customer satisfaction" performance, part of which is tied to enhancing their reputation for treating patients respectfully.
In Mississippi, the 1995 State Health Plan acknowledges the need for direct involvement from minority community members in health policy and planning decisions. As community involvement measures are implemented, the potential exists to (1) make policy and planning decisions that are more sensitive to the needs and concerns of minority community members and (2) create a cohort of people who, by virtue of their participation in the department's decision-making process, are better prepared to step into key department positions and thereby change the agency's sensitivity to minority issues from within. In South Carolina, the state's public health authority has recognized and placed a high priority on cultural competence training, as well as on recruitment, retention, and promotion of minority staff. We were told by one central office staff member in South Carolina that achieving a culturally competent organization depends not just on training, but on support from the top levels of management, which appears to be happening in South Carolina in the form of long-range planning goals.
Developing housing as a key to urban "neighborhoods." The non-profit Metropolitan Housing Partnership (MHP) of Jackson has a contract with the city to disburse federal housing funds. The MHP purchases housing and enters into subcontracts for rehabilitation. It also provides homeowner training classes on maintenance and financial management. Since creating a sense of neighborhood must come before any city-wide coalition building is possible, the Housing Partnership focuses in a more encompassing way on neighborhood development through its rental units, street reconstruction with city funds, demolition of dilapidated structures, coordination with churches to build parks, its Land Bank, community policing partnership, and assistance in organizing neighborhood associations. The Partnership has also initiated discussions with local health care providers about locating primary care facilities in the neighborhoods where it is focusing its organizing activities.
Rural community revitalization. The major issue facing many rural southern towns today is how to interrupt the downward spiral of diminished economic opportunity, shrinking population, reduced tax base, and a lack of public investment funds to promote local revitalization. Leadership groups in towns like Isola, Mississippi, and Orangeburg, South Carolina, invite local public health officials to take part in community planning activities. This affords an opportunity to put "health" on the community development agenda, reduce the distrust of public health agency practices, and open channels of communication that can be used for localized "targeted intervention research." In this way, health professionals and community organizers can develop a shared knowledge base of perceptions, terminology, practices, and beliefs to help prevent further disease transmission.
A "neighborhood" cannot be created at will, but the conditions under which neighborhoods can grow and flourish can be promoted through concerted action by public servants and community members with shared goals. Key decisions are made at the local level about where to locate and how to operate clinics, public transportation, parks and recreation programs, law enforcement authorities, and public schools. If county commissions, city councils, school district boards, and public health advisory boards are to target high-risk neighborhoods with long-term community development investments, it will be because a coherent, persuasive investment strategy has been presented with a unified voice that speaks for neighborhood groups and coalitions of community-based organizations.