PROVIDING HIV/AIDS CARE IN A CHANGING ENVIRONMENT — JUNE 2003
The young man from Puerto Rico was ultimately drawn to the Borinquen Family Health Center in Miami because its name was familiar. “Borinquen” was the name the Indians native to Puerto Rico gave the island (it means “island of the sun”). Even so, he wasn’t inclined to share too much about his life.
“When he first came to our clinic, he introduced himself by a fictitious name,” says Vincent Delgado, HIV coordinator at the health center, which is funded under Titles I and III of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. “I had a long conversation with him, and I could tell that he was very afraid.”
Helping the young—and the not-so-young—cope with the relationships between sexual activity, drug use, and risk for HIV is often a challenge for organizations that, like the Borinquen Center, provide prevention and care to men of color who have sex with men (MSM).
Currently, approximately 290 men are enrolled in HIV care at the Borinquen clinic. Sixty percent are from either Cuba or Puerto Rico and speak mostly Spanish. An additional 30 percent are Haitian and speak primarily Creole. Histories of substance abuse are common among this client population, as is trading sex for drugs.
“It is very difficult to reach out to our target population,” says Delgado, “because of stigma.” The stigma he refers to is not just about HIV: It’s also about homosexuality and substance abuse. A related problem is what Delgado describes as a lack of trust of “mainstream” medical care providers. In response, the clinic has adopted a five-step process for cultivating trust and providing high-quality, nonjudgmental services that help MSM acknowledge their risk, get tested, and stay in care over time:
1. Develop trust. When outreach workers go to places frequented by high-risk MSM of color, the first interaction must be solely about building a relationship. In fact, continued trust building is likely to be a big part of subsequent encounters because men have to believe that they are not being judged and that the outreach workers care about them. Building trust was critical to helping the young Puerto Rican man who finally found the courage to seek care at the clinic. Delgado recalls, “Over time he was able to say, ‘I want to be honest with you,’ and that’s important for his being honest with himself.” Today the young man is one of the health center’s 380 clients.
2. Educate. Delgado emphasizes that the high-risk, disenfranchised populations served by the Borinquen Center will accept education about HIV and other sexually transmitted infections (STIs) only after trust has been developed. Education therefore includes one-on-one counseling and discussion.
3. Provide HIV counseling and testing. The clinic provides counseling and testing in accordance with Federal guidelines. Special attention is given to the need for anonymity and confidentiality. At Borinquen, “HIV” and “AIDS” appear nowhere on public signage—the HIV clinic is called the Phoenix Program—and the clinic promises no waiting for clients who agree to come in for testing. Funds from HHS’ Centers for Disease Control and Prevention (CDC) pay for counseling and testing, ensuring that CARE Act funds are not used to supplant other resources.
4. Use peers. The importance of using peers in providing access to hard-to-reach populations has been discussed in the literature. Peers at Borinquen lead outreach efforts off site, build relationships with members of the target audience, and provide support to men who come in for counseling and testing.
5. Follow up with clients. The Borinquen Center has not experienced the high number of individuals not returning for test results that has plagued many providers of HIV services. Delgado attributes this success both to taking the time to develop a trusting, caring relationship with clients and to the follow-up that peers provide for clients who do not return for posttest counseling. “We go find them,” he says, “whether it is in a park, on the streets, or in a bathhouse.” To ensure confidentiality, the same peer counselor who developed the relationship with the client and brought him in for testing conducts the posttest follow-up.
The process adopted at the Borinquen Center appears to be characteristic of many CARE Act providers’ efforts to reach specific populations in that it enhances existing clinic programs instead of creating an entirely new program. Currently, Borinquen is reaching 5 to 10 new HIV-positive clients per month, and Delgado credits the clinic’s five-point process for much of its success.
It is easy to overgeneralize about the epidemic among minority MSM, just as it is about the epidemic among gay white men or among minorities in general. The fact is that risk for and incidence of HIV vary greatly among subpopulations within the demographic groups broadly defined by sexual orientation and race. In one realm, many MSM are effectively incorporating HIV prevention behaviors into their lives; if they are living with HIV disease, they are in care and are enjoying the benefits of today’s treatments. In another realm, many men remain out of care, untested and unaware that they are HIV positive.
The AIDS epidemic is, in many ways, one in which the “easy-to-reach” populations have been reached and the people remaining out of care face barriers that may seem insurmountable to them, especially among certain communities of minority MSM. An extraordinary proportion of MSM of color are at heightened risk of contracting the virus, or they are already infected with HIV—but many do not know it. And for reasons ranging from stigma to being overwhelmed with challenges in meeting basic human needs, such as food and shelter, some people do not want to know it.
By the end of 2001, 666,026 of the 807,075 AIDS cases diagnosed in adolescents and adults in the United States since 1981 were among males—nearly 5 times the number of female cases.1 For an estimated 59 percent of male AIDS cases, MSM was the HIV exposure category.2
The leading cause of HIV infection among minority men is sexual contact with other men.3 For AIDS cases reported among males in the United States in 2001, MSM was the HIV exposure category in 66 percent of cases among Asian/Pacific Islanders (A/PIs), 48 percent of Hispanics, 46 percent of American Indians/Alaska Natives (AI/ ANs) and 43 percent of blacks. The risk factor was MSM who also inject drugs (MSM/IDU) for 20 percent of A/PI males, and between 5 and 7 percent for all others.4 By 1998, men of color accounted for more than half of new AIDS cases related to the exposure category MSM in the United States, up from 31 percent in 1989. Five cities accounted for 33 percent of AIDS cases reported among MSM from 1996 to 1998: New York (12 percent), Los Angeles (9 percent), Miami (5 percent), Washington, DC (4 percent), and Chicago (3 percent).5
If studies like the CDC’s Young Men’s Survey reflect the entire epidemic, the worst may be yet to come. In this seven-city study of young men frequenting bars, dance clubs, and other venues where MSM congregate, HIV infection rates were high, particularly among minorities (see table). For example, the study found that prevalence of HIV among survey participants ages 23 to 29 was 7 percent for whites, 14 percent for Hispanics, and a startling 32 percent for blacks.6 In other words, compared with whites, the rate was twice as high for Hispanics and almost 5 times higher for blacks.
Other studies indicate that minority MSM become infected at earlier ages than do whites and are more likely to learn that they are HIV-positive later in the course of infection. In a CDC analysis of surveillance data from 1996 to 1998 from 25 States with HIV reporting systems, the proportion of men who were age 13 to 14 at initial diagnosis was 16 percent among blacks, 15 percent among A/PIs, 15 percent among AI/ANs, 13 percent among Hispanics, and 9 percent among whites. In the same age group, a much higher proportion of minorities had already progressed to AIDS at initial diagnosis than had whites.7
Despite the tremendous gains in health and lifespan attributable to antiretroviral therapy (ART), black and Hispanic MSM are less likely to receive ART than are whites and thus have benefited less. Through efforts of CARE Act providers and others, the gap has diminished, but it still exists.
Providers face a variety of challenges in bringing minority MSM into care and helping them stay there, including stigma, historically poor access to care, and negative perceptions of the health care system.
The Betances Health Center on the Lower East Side of Manhattan serves a primarily Hispanic population. According to Nunzio Signorella, the center’s director of behavioral health, virtually all HIV-positive male patients report on intake that their HIV risk factor was heterosexual contact. “Then, through treatment and counseling, it becomes evident the patient is also an MSM,” he says. “If they’re in denial of their own sexual orientation, they’re much more likely to deny their HIV risk, too.”
HHS’ Health Resources and Services Administration (HRSA) commissioned research activities in 2000 to increase understanding of the epidemic among minority MSM populations. Activities summarized in the report MSM of Color (available through the HRSA clearinghouse) included roundtable discussions and interviews with key informants in the community.* Study participants highlighted the role that stigma plays in keeping people out of care. Specifically, they explained that MSM fear condemnation from their families, their communities, and service providers in a world that generally views same-sex sexual activity as unacceptable.
Participants in the roundtables also highlighted the different ways in which men view sexual activity, confirming what advocates, consumers, and CARE Act providers have long reported: Minority MSM are less likely than their white counterparts to identify as gay or bisexual. These findings echo those that emerged from a HRSA-sponsored discussion group among gay men of color convened almost 10 years ago to identify health care access issues among this underserved population. They also mirror those reported in a recent issue of the Journal of Acquired Immune Deficiency Syndrome, which said that “[i]n a CDC-sponsored study of 7871 MSM with HIV infection or AIDS (excluding 909 MSM/IDU), 21 percent of black MSM, 13 percent of Hispanic MSM, and 12 percent of A/PI MSM identified themselves as heterosexual, compared with 5 percent of AI/AN and 5 percent of white MSM.”8 Findings from both the HRSA- and the CDC-sponsored research illuminate the need for outreach and prevention messages to MSM who do not see themselves as sexual minorities. Moreover, these men—indeed, anyone who fears encountering a family member or neighbor at a pharmacy or doctor’s office or being otherwise associated with the “gay” disease—needs access to providers and interventions that are not perceived to be gay-related.9,10
Philippe Chaliade, M.D., medical director for Washington, DC’s Whitman-Walker Clinic, says that the perception persists among many people of color that the clinic only serves gay white men, despite the fact that 75 percent of its HIV clients are African American. When Whitman-Walker opened a men’s clinic—the Max Robinson Center, located in a largely African American area of the District—it deliberately did not call it a gay men’s clinic in order to encourage black men, particularly MSM who do not identify as gay, to use the clinic’s services.
Stigma is not the only factor preventing MSM of color from receiving HIV care. Not knowing one’s HIV status keeps people out of care, and research indicates that young black MSM in particular tend not to be aware that they might be infected.11 For example, of the 150 HIV-infected black MSM who tested positive when participating in the Young Men’s Study, 139 (93 percent) had not previously known their serostatus. Of those who did not know their status, 71 percent stated either that it was unlikely or that there was “no chance” they were infected.12 Lack of knowledge of one’s HIV status may be related to a host of factors ranging from lack of information to denial, from having no access to services to needing to give full attention to more immediate unmet needs.
For example, consider HIV-positive men of color leaving corrections. Although some programs—many funded through the CARE Act—provide transition planning services to this population, most ex-offenders do not have access to those programs. The seven grantees participating in the joint HRSA–CDC Corrections Initiative understand that many ex-offenders return to society no better prepared to earn a living wage than when they entered incarceration and that employers willing to hire them can be hard to find. The grantees, which are currently testing models for transitional services for people leaving corrections (a monograph on the initiative will be published in summer 2003) describe a population for whom imprisonment and the activities leading to it often result in estrangement from family. Without access to services that address immediate socioeconomic needs and health care, many HIV-positive men will have nowhere to turn—except to the behaviors that led to incarceration in the first place—and may remain unaware of their serostatus, out of care, or both.
Several cultural factors affect access to both HIV prevention and care. In HRSA’s roundtable discussions with and interviews of MSM in 2000, participants described the medical system as unwelcoming for men of minority cultures. This perception may be especially true for people for whom English is a second language, AI/ANs, and A/PIs, groups that encompass many cultures.13 AI/ANs, for example, make up less than 1 percent of the U.S. population but comprise 557 federally recognized tribes.14 Similarly, the term “Asian/Pacific Islander” describes about 40 cultures and more than 100 languages and dialects. Few HIV prevention materials have been translated into Native American or A/PI languages, but they are needed: Results from the Young Men’s Study (described on page 3) reveal HIV prevalence rates among AI/AN young men of 6.7 percent, more than twice that for whites (3.3 percent) and virtually equal to that of Hispanics (6.9 percent).
Jaime Martinez, M.D., director of HIV youth services in the Adolescent Medicine Division of Stroger Hospital of Cook County (Chicago), notes that young men face youth-specific barriers to HIV care. They may have no way of getting to a clinic and no way to pay for services once they are there. Clinic staff may not be comfortable with the way youth dress, and legal issues can confront those who are underage or undocumented as well as clinicians who treat them. If a patient tells his family that he is gay or HIV positive, he may also face homelessness. Martinez explains, “When they disclose about their sexual lifestyle or inform their family about their HIV status, many of our young men are asked to leave home. At that point coming into care is not a priority—they are looking for shelter.”
The principal investigator of the Adolescent Medical Program at the CORE Center (AMaC), a Title IV-funded youth initiative, Martinez says that mental health assessments of a subset of the young people seen at the center have found that a large proportion showed symptoms of mental health disorders, including depression (83 percent), posttraumatic stress disorder (73 percent), anxiety disorders (64.9 percent), and even psychotic symptoms (32 percent), which complicate treatment. An unresponsive health system, stigma, and problems such as mental illness are three possible reasons that so few HIV-positive young people are in care, despite estimates that 25 percent of all HIV infections occur in youth age 21 or younger.15
Each of the five CARE Act providers interviewed for this article uses a composite of community and peer outreach initiatives to reach MSM of color. Once individuals have entered care, comprehensive care and support services are provided to keep them there. AMaC uses a team approach that includes medical providers, case managers, and social support groups to address young people’s multiple needs. For example, a support group for young men offers lunch as well as the opportunity to talk with each other about dealing with families, adopting preventive behaviors, and adhering to ART.
“Youth buddies” are also critical to the AMaC program. Following the peer education model, youth buddies are HIV-positive young people who provide one-to-one counseling. They not only provide opportunities to discuss topics such as negotiating work and school and dealing with medication side effects but also make the issues surrounding those topics more believable to youth than if the information were to come from an adult clinical provider. Suicide is a critical concern for providers who work with youth, whose rates of suicide are substantially higher than among the general population; if suicide is identified as an issue, the youth buddies inform the clinic psychologists. Martinez explains that the availability of youth buddies is especially important for young MSM who are struggling with issues of disclosure.
“Models of care where adults come in the door, get seen by a medical provider, and then are sent out the door are not transportable to these young men,” says Martinez. “Programs for adolescents have to address not only medical [needs] but mental health and social needs and take into consideration their psychosocial development. Teens must be talked with in a way they understand.”
To address some of these issues, the Comprehensive HIV Center at St. Vincent’s Hospital and Medical Center, in the Greenwich Village area of Manhattan, offers a program targeting MSM called “Talk Safe,” which is funded in part through Title I. Each participant, whether HIV negative or untested, is offered up to 10 sessions of counseling on harm reduction and preventive behaviors. Despite St. Vincent’s downtown location, Baney says, 70 percent of the center’s clientele come from the outer boroughs or upper Manhattan. Ninety percent of clients are minorities: 42 percent Hispanic and 40 percent African American. Half are MSM.
Besides bringing clients in for counseling and testing, St. Vincent’s reaches out to communities in which MSM and others at risk for HIV can be found. Churches, schools, and social service agencies are avenues through which MSM may be reached. Sending a nurse into the community to find patients who have fallen away from treatment has been especially helpful in finding patients with substance abuse issues. At the center, everything is done to help clients feel comfortable, according to Antonio Urbian, M.D., director of the Comprehensive HIV Center’s education and training program. “We do not try to put people in categories,” he says.
Martinez, of Chicago’s CORE Center, puts it a bit differently: He says that the process of providing a good sexual history takes the pressure off clients. “After we ask the question about their sexual behavior with men, it takes the burden off them,” he says. “In general, many males we see feel great relief in being able to speak about their activities to adults who are not judgmental about the sexual behaviors they engage in.”
Delgado says that making all clients feel comfortable is the cornerstone of the Borinquen Center’s care activities. Outreach efforts within the nine ZIP codes of Miami the agency serves bring in people from high-risk sites that staff have identified, such as under bridges and inside shooting galleries—hangouts for people who may be prostitutes, homeless, or substance abusers. Whatever their station or orientation, Delgado says, all that matters is to provide the care they need. “To me, labels are not significant,” he says. “Care is what I really care about. I just want to show them sensitivity, period.”
No single approach ensures successful outreach to MSM of color and the ability to keep them in care. However, the programs highlighted in this article all have incorporated elements including cultural competency, awareness of stigma, and aggressive case finding. The programs also reflect the need to demonstrate not only that they are competent to treat the physical symptoms of HIV disease in MSM of color but also that they can do so in ways that meet their clients’ particular social and psychological needs.
The five CARE Act providers profiled in this article are reaching MSM with much success. However, the high seroprevalence among some populations of MSM of color and the reemergence of unsafe sexual behavior among a broad spectrum of MSM call for renewed attention to the epidemic among minority MSM and development of new ways to fight it.
The 31-year-old Borinquen Center began as a grassroots effort to serve Miami’s growing Puerto Rican population. Today, it serves a multiethnic clientele who are predominantly Haitian, Puerto Rican, Cuban, and Hispanic. Its client population is largely uninsured (81.5 percent), and at least 2 of 3 clients live at or below 200 percent of the Federal poverty level. To reach MSM of color, the center has established linkages with religious organizations that serve its target populations and conducts outreach in other areas of the community where MSM may be found. When prospective clients arrive at the center, they are welcomed by trained peer educators who aim to make the men feel welcome and accepted. The peer educators are Latino and Haitian MSM who are trained to be sensitive to clients’ culture, beliefs, and values. The center offers outreach, voluntary HIV counseling and testing, primary care, in-house dental care, psychotherapy, and nutrition services.
The Borinquen Center receives CARE Act funding under Title I (outreach, case management, primary care, and counseling) and Title III (early intervention services and planning).
Contact: Vincent Delgado, 305.576.6611, ext. 307.
|
Phase I 1994–1998 (Young Men Age 15–22) |
Phase II 1998–2000 (Young Men Age 23–29) |
|||
|---|---|---|---|---|
N |
Prevalence (%) |
N |
Prevalence (%) |
|
| Black | 587 |
14.1 |
497 |
32 |
| Mixed Race | 335 |
13.4 |
— |
— |
| Hispanic | 1027 |
6.9 |
641 |
14 |
| American Indians/ Alaska Native |
45 |
6.7 |
— |
— |
| White | 1246 |
3.3 |
1409 |
7 |
| Asian/Pacific Islander | 203 |
3 |
||
| Total | 3449 |
7.2 |
2942 |
13 |
| — = Data not collected. Source: Centers for Disease Control and Prevention. HIV incidence among young men who have sex with men, seven U.S. cities, 1994–2000. MMWR 50(21):440-4. |
||||
Located on the Lower East Side of Manhattan, this 33-year-old health center offers comprehensive health prevention, care, and support services to an active caseload of more than 11,000 underserved patients. The Lower East Side is home to much poverty, but only 30 percent of the center’s client base qualify for some form of public assistance. The area accounts for 14 percent of all HIV/AIDS cases in Manhattan; an estimated 1 in 17 Hispanics in the clinic’s service area are HIV-positive.
Betances staff represent the diversity of the ethnically rich communities the center serves and speak many languages, including English, Spanish, Mandarin, Cantonese, and Russian. Comprehensive HIV/AIDS care at the center includes noninvasive testing, counseling, medical care, support groups, nutritional counseling, and access to a roster of alternative treatments that promote immune functioning and treatment success.
“To reach our target audience of men who have sex with men,” says Nunzio Signorella, the center’s director of behavioral health, “we have to provide a nonjudgmental environment and complete anonymity.” Signorella explains that upon intake, few of the clinic’s clients acknowledge their MSM risk factor. Currently, the clinic cares for approximately 380 clients living with HIV/AIDS; 56 percent are men, and of those, 40 percent—approximately 85 clients—are MSM.
The clinic, which currently receives Title III early intervention services funding as well as Title I resources to provide adherence support and harm reduction, uses a comprehensive outreach strategy to bring MSM of color into care. The approach includes both peer-based, one-on-one interventions (e.g., for men leaving corrections and living in transitional housing) and communitywide HIV counseling and testing activities. Signorella notes that increasingly, men are coming into the clinic as a result of word-of-mouth information from their friends. He attributes this shift to the center’s longstanding position in the community and its track record of building trusting and confidential relationships with sexual minority men.
To meet the challenge of keeping clients in care over time, Signorella places both case management and ancillary services at the top of the list of critical activities. “We provide group counseling to men struggling with their HIV diagnosis and also to those dealing with addiction,” he says. He underlines the importance of harm reduction counseling and the strong role of the organization’s peer-based adherence program.
Contact: Nunzio Signorella, at 212.227.8401, ext. 192; nsignorella@betances.org.
Since expanding its focus beyond diagnosis and treatment of gay men’s sexually transmitted infections in the 1970s to HIV/AIDS services in the 1980s, the Whitman-Walker Clinic has struggled against the perception that it only serves white gay men—despite the fact that most of its HIV/AIDS clients are people of color. The clinic, which receives CARE Act funding from Titles I through IV, has reached out to MSM of color in part by hiring staff who are culturally competent. In addition, the clinic placed its Max Robinson Center in DC’s Anacostia neighborhood, which is largely African American. The Max Robinson Center’s services include primary medical care, dental care, day treatment, HIV/AIDS support services, mental health and addiction treatment, legal services, and voluntary HIV counseling and testing. The center also reaches out to MSM of color through its Men’s Health and Wellness Clinic, which offers confidential STD testing, hepatitis A and B vaccination, and risk-reduction counseling.
Several prevention initiatives targeting minority MSM underscore Whitman-Walker’s array of prevention services. The clinic targets HIV-negative African American men through its Black Men’s Health Network, which provides street outreach and group interventions. The network collaborates with communities of faith and community organizations to reach subpopulations of African American men. The clinic targets Latino men through a similar culturally competent program called Acuarela. Whitman-Walker is also implementing “Proud and Positive,” a prevention with positives initiative.
Contact: Stephen McDonnell, at 202.939.1536. smcdonnell@wwc.org.
The CORE Center is a four-story, 60,000 sq. ft. facility founded by the Cook County Bureau of Health Services and Rush-Presbyterian-St. Luke’s Medical Center to provide comprehensive outpatient care to individuals and families affected by HIV/AIDS and other infectious diseases. Physical comfort, language, and privacy are priorities at the center, and its diverse staff convey caring and respect to clients. The center offers a full range of HIV primary care and social services for men, women, adolescents, and children.
The Adolescent Medicine Program at the CORE Center (AMaC) presently cares for the majority of identified HIV-positive youth receiving care in Chicago. The discrepancy between the estimated number of HIV-positive youth and the actual number of youth in care highlights the need to improve the system linking youth to care.
AMaC takes four approaches to case finding of HIV-infected youth. First, the program focuses on communities identified as epicenters for HIV and associated comorbidities (such as STIs and TB). Second, AMaC works within subpopulations and subcultures, especially youth from communities of color, adolescent women, and adolescent MSM, groups that traditional outreach and education programs often have difficulty reaching. Third, the program reaches out to youth who fit youth profiles developed from data collected in the case-finding program and from primary care services (e.g., youth with high variability in sex partners, a history of drug use, gang affiliations, or a history of STIs). Last, the program identifies and works with networks of youth (defined as an HIV-positive youth and his or her friends and sexual partners), who are often characterized by similar risky behaviors and comorbid factors.
HIV-positive peer buddies and peer health educators are a cornerstone of the AMaC services offered to youth. Peer buddies help bridge the gap between patients and the professional staff, and peer health educators conduct community outreach where many professional health workers may not be as effective in engaging youth at risk for HIV. As the AIDS epidemic has changed, peer educators have reached out to people of color and other populations disproportionately affected by the epidemic.
Contact: Jaime Martinez, M.D., at 312.633.3202.
With a presence in Greenwich Village that long predates the AIDS epidemic, St. Vincent’s has built on its reputation for compassionate care by reaching out to MSM of all colors. The HIV/AIDS Center conducts outreach to MSM of color through churches, community organizations, social service agencies, and schools. In addition, an African American physician on staff coordinates outreach to the African American community, and a staff nurse goes into the community to find patients who have stopped returning for services. Staff reflect the patient population and speak the same languages as patients, including Spanish, French, Portuguese, and several Chinese dialects. A Title I-funded HIV program called “Talk Safe” provides 10 counseling sessions at no cost to help HIV-negative and untested clients protect themselves against HIV infection and access HIV care if they need it. The center is piloting a rapid HIV testing program as a way of bringing people who test positive directly into care without having to return for test results. Current clients are offered incentives to bring in people they know for testing; clients who test positive are referred to staff physicians. The counseling process includes a risk assessment to determine what behaviors may have put the client at risk for HIV.
Contact: Matthew Baney, at 212.604.2943.
In this Issue
Prevalence of HIV Among Young MSM
Prevention and Care at Whitman-Walker Clinic
Publisher
U.S. Department of Health and
Human Services
Health Resources and Services
Administration
HIV/AIDS Bureau
Editor
Richard Seaton
Impact Marketing and
Communications
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