The role of community-based organizations in responding to the AIDS epidemic: examples from the HRSA service demonstrations

This paper considers the role of community-based organizations in providing out-of-hospital services to persons with AIDS, using information collected as part of a case-study evaluation of AIDS service demonstration grants in four cities. Community-based organizations which existed prior to the AIDS epidemic have been reluctant to expand services to persons with AIDS. The widest array of services is provided by new broad-based organizations. Also, exclusive reliance on community-based organizations for service delivery leads to inequities in the delivery system, due to difficulties in developing such organizations in low-income communities.     

Appeals court says FBI erred in terminating doctor's services. Federal Bureau of Investigations

The late Dr. James Cullen of San Francisco had a four-year contract to perform physical exams on local FBI agents and job applicants. When the FBI learned that Dr. Cullen had AIDS, the San Francisco field office stopped using his services. An initial non-jury trial found that Dr. Cullen did not have private right of action to sue the Federal government, and that his evasive answers as to his state of health and risk of transmission had prevented the FBI from learning the extent of risk. Upon appeal by Dr. Cullen's estate, however, a Federal court determined that the FBI had terminated Dr. Cullen based on his HIV status, not on the quality of his work. The FBI's actions violated the 1973 Rehabilitation Act barring government-funded programs from discrimination based on disability.     

Stressed out

With mental health services shrinking, emergency departments are deluged by patients they were never designed to handle."The safety net for these poor people is unraveling," says Alicia Boccellari of San Francisco General Hospital. Her hospital and several others are confronting the crisis with little help from the government or private insurers.     

Minorities and AIDS

A common misconception is held among many ethnic minoritiesin San Francisco that AIDS is exclusively a ‘gay whitemale disease’. This myth is false, but dangerous. To assistethnic minorities in understanding their risks for AIDS, successfuleducational programs for these populations must recognize thediversity within these communities, including their differingcultures, languages and religious backgrounds. San Franciscohas adopted a model that utilizes well-established and well-respectedcommunity-based organizations to provide the education and riskreduction programs. Utilizing these organizations allows foreducation of diverse populations that is culturally and linguisticallyrelevant, thus allowing San Francisco an opportunity to preventthe national minority AIDS statistics from occurring withinits boundaries.     

Improving community support for HIV and AIDS prevention through national partnerships.

If the transmission of human immunodeficiency virus (HIV) is to be prevented, the environment in which people live should predispose them to engage in and sustain safe behaviors. Too often in public health, the range of organizations that make up that environment are overlooked, and prevention strategies are limited to familiar medical and public health institutions. Improvement in public health does not occur in isolation, apart from the other institutions of society--and so it is with the HIV-AIDS epidemic. Education; business and labor; religion; government; voluntary, civic, and social organizations; and the media can all serve as facilitators or as barriers to creating the environment--at the national, regional, State, or local level--that will prevent and control the spread of HIV infection and AIDS and support the needs of those already infected. Collectively, they become a comprehensive HIV prevention network with access to and influence on the total public. One of the most significant benefits of this network is the multiplier effect on the limited resources of public health. Therefore, as part of its HIV and AIDS prevention strategy, the Centers for Disease Control (CDC) has developed national partnerships to involve the leadership of business, labor and industry, religious institutions and organizations, and voluntary organizations in HIV and AIDS prevention and service. Some of these partnerships are federally funded, others are not. The national partnership program described in this paper has produced increased resources for HIV education and services and has demonstrated the synergistic benefits resulting from public and private cooperation in addressing the HIV epidemic.     

Private funders fall short in HIV prevention, study says

A study conducted by the Center for AIDS Prevention Studies at the University of California, San Francisco concluded that private funders are reluctant to support needle-exchange or condom distribution programs. The study found strong funding support for public policy, outreach, and community mobilization, but major gaps remain in terms of harm reduction programs. Most grants were found to be targeted toward the general populations, rather than at-risk groups such as gay men, ethnic minorities, or drug users.     

Report seeks new prevention strategies for young people

The AIDS Research Institute and Center for AIDS Prevention at the University of California, San Francisco collaborated with the Harvard AIDS Institute on a report that considers HIV/AIDS among young people in the United States. The report indicates that AIDS is becoming a disease of the young, and prevention policies are not addressing the realities of youth beliefs or behaviors. The report calls for expanding age-appropriate sex education and condoms in schools, increasing government prevention funding, urging prevention educators to use private-sector marketing tools, and encouraging the private sector to market HIV prevention.     

Government dependence of Chinese and Vietnamese community organizations and fiscal politics of immigrant services

Few studies have examined the impact of government support and policies on immigrant services within ethnic enclaves. This paper seeks to address this gap and examines the structure and challenges of ethnic community based organizations (CBOs) that serve low income immigrant populations and the impact of government support and policies on these CBOs. The study utilized case study and ethnographic methodologies and examined 2 Chinese and 2 Vietnamese CBOs in the San Francisco Bay Area. The findings show that ethnic CBOs critically depend on government fiscal support for survival. In exchange for fiscal support, ethnic CBOs represent public assistance and legitimacy interests for government in immigrant communities. However, culturally proficient and community leadership resources of ethnic CBOs can serve as bargaining chips to secure government funding, reduce compliance to government demands, and advance immigrant community interests. Nevertheless, in times of government fiscal crisis, ethnic CBOs and immigrant services tend to be most vulnerable to budget cuts due to lack of political voice. In sum, government-community collaboration through ethnic CBOs has a central role to play in facilitating and strengthening health and human services for rapidly growing, culturally diverse immigrant populations. These collaborative efforts in immigrant services are vital to cultivating healthy immigrant human capital and multicultural communities across the United States.     

AIDS Service Organizations and Their Presence on the Internet

Summary

AIDS service organizations have been the driving forces behind providing HIV/AIDS-positive individuals and the public with up-to-date information about the disease, treatment regimens, and prevention measures. It is critical that these organizations develop and maintain Internet sites for the rapid dissemination of information. The Internet offers the capability of providing a communication and publication means to reach a wider audience, reach greater numbers of HIV/AIDS-positive individuals, and reach even those in the most remote areas. This article discusses six major AIDS service organizations (Gay Men's Health Crisis, San Francisco AIDS Foundation, AIDS Project Los Angeles, AIDS Action Committee of Massachusetts, AID Atlanta, and the Howard Brown Clinic) and their presence on the Internet. All six organizations have made a national impact on the provision of HIV/AIDS services, programs, information, and advocacy efforts.     

Providing support to caregivers and self-care

The evolution of HIV/AIDS care has resulted in a wide range of caregivers who work out of public and private hospital facilities, nongovernmental organizations (NGOs) and community-based facilities. Others are volunteers and community health and social workers based at facilities or community sites. Many caregivers are family members or part of a client's close social network. Additionally, people living with HIV/AIDS (PHA) themselves engage in self-care and provide support to other PHA through support groups. In the best-case scenario the services of these caregivers are sometimes provided free of charge at one site by a specialized NGO. In many cases, however, a person wishing to gain access to care and social services may need an understanding how the systems and procedures of various institutions operate. Many PHA are unprepared for the administrative, financial, and legal barriers that they may encounter. To cope with this need, a new type of support service called the "buddy" system has emerged. Buddies are individuals who are less directly involved with, but who know about HIV/AIDS, the services available and the rights of PHA. A buddy is close enough for the PHA to approach, has sufficient time to devote to him/her and can be asked almost everything. The article on the Rio de Janeiro Buddy Project provides an example of a project for gay men in Brazil. In other parts of the world where the buddy system is non-existent, the PHA must often rely on support provided by family and friends.     

Staffing in AIDS service organizations: the volunteer contribution

This article reports results from a survey of AIDS service organizations (ASOs) that provide medical and social services to people with AIDS in the Oakland, California, area. The survey was designed to assess organizational and staffing characteristics of ASOs. Forty two of sixty-seven (62.7% response rate) ASOs responded, providing detailed data on their staffing patterns. ASOs that provided social services reported 48.5 percent of their total full-time equivalents (FTEs) as volunteers while medical organizations reported only 9.5 percent of their total FTEs as volunteers. Among the social service providers, ASOs that self-identified as private, non-profit community-based organizations (CBOs) reported greater than half (50.8 percent) of their total FTEs as volunteer staff. All CBOs that reported utilizing more than five volunteer FTEs were AIDS-specific providers and had designated a full-time, paid staff position as volunteer coordinator/director.     

Memisa and home care for AIDS patients in Zambia

Health care in Zambia has since long been receiving support from non-governmental organizations (NGOs) like Memisa. Church organizations bear responsibility for a considerable part of the national health services. During the last 15 years, growing attention has been given to improvement of basic services in the villages and to recruitment and organization of groups in the community active in the field of health care. The combat against AIDS is a major focus. Many NGOs give health education on HIV and AIDS, are coaching HIV-positive individuals and are trying to organize support for AIDS patients and their relatives and relief for women and children after the death of husband or father. The community home care projects established in the urban areas of Copperbelt province in Zambia provide a decent terminal phase for AIDS patients and assist the surviving families in maintaining a certain socioeconomic level of existence.     

Prevention and control of AIDS: the role of NGOs

Because of their ability to more easily provide services to high-risk groups, non-governmental organizations (NGOs) will play a critical role in any successful AIDS prevention program. Since HIV is often transmitted through behavior deemed intimate or taboo, government health officials have a difficult time reaching the affected group. But NGOs, which have a long record of involvement in the field of health and social welfare, possess several advantages over government agencies: 1) they have rich experience working at the community level; 2) their autonomous nature allows them to respond more quickly; 3) they have access to marginalized groups; 4) they generally work with the target groups to raise their self-esteem; 5) they can act as a bridge between the community and the national level; 6) they often employ innovative methods; and 7) their method of operation allows for cost- effectiveness. Furthermore, NGOs can choose their own areas of involvement according to their feasibility, past experience, and priorities. NGOs can be instrumental in providing information on HIV infection and AIDS to the public particularly to special target group populations -- the young, women of reproductive age, prostitutes, and intravenous drug users. Additionally, NGOs can work in policy advocacy, in providing training for different groups, in providing counselling and other assistance to those affected by HIV, in screening donated blood, and in caring for AIDS patients. Though offering a great vehicle for combating the epidemic, NGOs will have to overcome several obstacles, including lack of government support, and lack of funds and resources.     

Do health plans influence quality of care?

OBJECTIVE: To investigate the relative impact of physician groups and health plans on quality of care measures. DESIGN: Secondary data analysis of receipt of preventive care services included in the Health Plan Employer Data and Information Set (HEDIS) among 10 758 patients representing 21 health maintenance organizations and 22 large provider groups in the San Francisco and Los Angeles, California, areas in 1997. Each patient was eligible for (at least) one of six HEDIS-measured services. Data identify whether or not the service was provided, the patient's health plan, and the provider group responsible for the care. We used logistic regression to examine variations across plans in HEDIS rates, and whether variations persist after controls for provider groups are included. SETTING: Patients from 21 health maintenance organizations serving San Francisco and Los Angeles, California, in 1997. MAIN OUTCOME MEASURES: Breast cancer screening, childhood immunizations, cervical cancer screening, diabetic retinal exam, prenatal care in the first trimester, and check-ups after delivery among patients for whom these services are appropriate. RESULTS: There are statistically significant differences across health plans in utilization rates for the six services examined. These differences are not substantially affected when we control for the provider group that cared for the patient. That is, controlling for provider group does not explain variations across plans, consistent with the view that health plans have an impact on HEDIS quality measures independent of the providers that they contract with. CONCLUSIONS: There are activities that plans can undertake which influence their HEDIS scores. On the face of it, these results suggest that plans can independently improve quality, in contrast to hypotheses that plans would be "too far" from patients to have an influence. Continued attention to collecting plan-level data is warranted. Further work should address other possible sources of variations in HEDIS scores, such as variability in the quality of plan administrative databases.     

Gender-specific Correlates of Sex Trade among Homeless and Marginally Housed Individuals in San Francisco

Objective: Sex exchange is a well-established risk factor for HIV infection. Little is known about how correlates of sex trade differ by biologic sex and whether length of homelessness is associated with sex trade. We conducted a cross-sectional study among a sample of 1,148 homeless and marginally housed individuals in San Francisco to assess correlates of exchanging sex for money or drugs. Key independent variables included length of homelessness; use of crack, heroin or methamphetamine; HIV status; and sexual orientation. Analyses were restricted by biologic sex. In total, 39% of women and 30% of men reported a lifetime history of sex exchange. Methamphetamine use and greater length of homelessness were positively associated with a history of sex trade among women, while heroin use, recent mental health treatment, and homosexual or bisexual orientation were significantly associated with sex trade for men. Crack use was correlated with sex trade for both genders. Correlates of sex trade differ significantly according to biologic sex, and these differences should be considered in the design of effective HIV prevention programs. Our findings highlight the critical need to develop long-term services to improve housing status for homeless women, mental health services for homeless men, and drug treatment services for homeless adults involved in sex work.Weiser, Dilworth, and Neilands are with the Center for AIDS Prevention Studies, University of California, San Francisco (UCSF), San Francisco, CA, USA. Cohen, Bangsberg, and Riley are with Epidemiology and Prevention Interventions (EPI) Center, Division of Infectious Diseases, San Francisco General Hospital, UCSF; Bangsberg is with the Positive Health Program, San Francisco General Hospital, UCSF.The Epidemiology and Prevention Interventions Center, Positive Health Program and Center for AIDS Prevention Studies are programs of the UCSF AIDS Research Institute.     

Focusing on the negative

A San Francisco HIV prevention group has started a series of programs focusing on keeping HIV-negative gay men uninfected. The group, Invention, began the programs in September in response to city-funded studies showing gay men returning to unsafe sexual practices. The San Francisco AIDS Office estimates that 650 gay or bisexual men seroconvert each year, up from 250 in 1987. Infection is sometimes regarded as a rite of passage into the gay community, where half of all gay men are already HIV-positive, and those with HIV are perceived as having a superior social service network for health and counseling needs. The HIV-negative men regard infection as inevitable, and are not as fearful of HIV since those who are positive are living longer. Programs will discuss how to build a meaningful life, help the HIV-negative develop a sense of the gay community apart from AIDS, and encourage dialogue between negative and positive men.     

Temporal trends in the incidence of non-Hodgkin's lymphoma and selected malignancies in a population with a high incidence of acquired immunodeficiency syndrome (AIDS)

Annual incidence rates for 1975-1985 were derived for Kaposi's sarcoma, non-Hodgkin's lymphomas, and seven other malignancies. Never-married men in the San Francisco Bay area constituted the study population. The pattern of increase in incidence of non-Hodgkin's lymphoma among men aged 25-44 years was similar to that seen for Kaposi's sarcoma; both increased significantly in San Francisco between 1980 and 1985 (p less than 0.001), with an increase among census tracts with high incidence of acquired immunodeficiency syndrome (AIDS) that was greater than the increase seen in other San Francisco census tracts. Among men in tracts with a high incidence of AIDS, non-Hodgkin's lymphoma reached an incidence in 1985 that was five times greater than preepidemic rates. These increased rates support the conclusion of clinical studies that non-Hodgkin's lymphoma is an additional manifestation of AIDS. Similar increases in incidence rates were not observed for other malignancies, suggesting that reports of these malignancies in homosexuals may be isolated incidents. Whether rates of non-Hodgkin's lymphoma will continue to increase and whether rates of other potentially AIDS-associated malignancies will increase in the future may depend on the latency of these malignancies and the survival period of AIDS patients.     

Few answers available to those re-entering job market

Speakers at the 9th National AIDS Update Conference coined the phrase the Lazarus Syndrome to describe AIDS patients whose health is improving following treatment with protease inhibitors. The improved quality of life and indefinite life expectancy has brought several issues to the forefront, including long-term planning and relationships, retirement funds, employment, and choosing between government disability benefits and health insurance. San Francisco Mayor Willie Brown will convene a summit to help people with AIDS to reenter the workplace. Currently, AIDS patients whose health has improved as a result of protease inhibitors will continue to receive Social Security benefits.     

Soft tissue infections among injection drug users--San Francisco, California, 1996-2000

Soft tissue infections (STIs), including abscesses and cellulitis, are a common complication of injection drug use. In 1997, 54 (32%) of 169 injection drug users (IDUs) in one San Francisco neighborhood had a drug-injection-related abscess or cellulitis (1). To characterize STIs among IDUs, data from San Francisco General Hospital (SFGH) discharge and billing records were analyzed. This report summarizes the results of that analysis and presents the case report of one IDU with an STI. The findings indicate that STIs are among the most common diagnoses among patients admitted to SFGH. Preventing STIs among IDUs in San Francisco will require coordinated action involving health-care providers, public health agencies, substance abuse treatment, community outreach, syringe exchange programs, IDUs, and community-based organizations.     

SEXINFO: a sexual health text messaging service for San Francisco youth

In response to rising gonorrhea rates among African American youth in San Francisco, Calif, Internet Sexuality Information Services, Inc, in partnership with the San Francisco Department of Public Health, developed SEXINFO, a sexual health text messaging service. SEXINFO is an information and referral service that can be accessed by texting "SEXINFO" to a 5-digit number from any wireless phone. A consortium of community organizations, religious groups, and health agencies assisted with identifying culturally appropriate local referral services. We conducted focus group sessions among youth aged 15 to 19 years to discuss the viability of the service. Usage of the service has been greater than expected, and an initial evaluation to assess the impact of SEXINFO on increasing access to sexual health services among at-risk adolescents has had promising results.