The fact that the SSA has ruled that AIDS patients are eligible for presumptive disability illustrates the gay community's ability to influence public health policy. In cities with large gay populations, such as New York and San Francisco, the supportive care received by many AIDS patients is actually superior to that received by the victims of other severe chronic illnesses. The Federal Government, however, cannot take credit for this. The development and growth of communitybased AIDS service organizations, largely through massive gay-organized volunteer efforts, is helping to create a highquality integrated care delivery system. Whether the current level of voluntarism can continue to match the pace of the epidemic or serve the growing segment of IV drug users; whether volunteer care is viable outside major metropolitan areas and can serve victims of other diseases; and whether voluntarism allows the government to abdicate its obligations to its people, remains to be seen.

The AIDS epidemic, then, highlights structural flaws in our national health policies. While federal health programs increasingly focus on strengthening the private sector's role in health care, publicly provided care is underfunded and inadequate, and a national health plan remains years away. The decentralized approach to health care forces municipalities affected by the epidemic to shoulder the burdens of national problems. Research becomes entangled in the federal budget process, blocking a decisive response to public health emergencies An obsession with technological solutions to illness allows lifesaving health education to be undervalued and underfunded.

Abstract: Community-based organizations in San Francisco have played a key role in providing social support services and public health information to those affected by acquired immune deficiency syndrome (AIDS). These services have helped minimize the economic impact of the epidemic by reducing the level and expense of hospitalization of AIDS patients. During fiscal year 1984-85, the three largest communitybased groups in San Francisco provided more than 80.000 hours of social support and counseling services. responded to over 30,000 telephone inquiries and letters, and distributed nearly 250.000 pieces of literature. Home-based hospice care was provided to 165 AIDS patients at an average cost per day of $94 per patient.

Community-based organizations require a significant level of funding from government and private sources. Local government in San Francisco has provided 62 per cent of the revenues for these groups. At the same time, they are not viable without a steady stream of volunteer labor. More than 130,000 hours were donated this past year. There are intrinsic limits to the current dependency on unpaid labor and contributions made by private charity and local government which will eventually require increased support and intervention at the state and federal levels. (Am J Public Health 1986; 76:1325-1330.)

Introduction

Community-based organizations have played a key role in responding to the AIDS (acquired immune deficiency syndrome) epidemic. In the fall of 1984, a survey of 55 cities conducted by the United States Conference of Mayors reported that 60 per cent of local health departments had established working relationships with community-based organizations providing a number of AIDS-related services ranging from public health education to psychosocial counseling and housing for AIDS patients.' This paper examines the role of nonprofit community-based services in response to the epidemic in San Francisco, California which has experienced the second largest AIDS caseload in the world (next to New York City).

History

The total number of reported AIDS cases in San Francisco grew dramatically from 24 in 1981 to 1,631 through the end of 1985. In 1982, the San Francisco Department of Public Health (SFDPH). through its Office of Lesbian and Gay Health, began to coordinate efforts to plan and develop services to meet the growing demands that the epidemic placed on the health care system. To avoid duplication of services and to coordinate the City and County's response (hereafter referred to as the City), a separate AIDS Activity Office was established within the SFDPH in 1983.3

The City has provided a substantial level of funding for a wide range of AIDS-related services. Funds have been allocated for epidemiological surveillance, assessments for medical care, home care, housing, psychosocial counseling, professional education, public health education, and risk reduction activities. Approximately $7.4 million in local funds were spent during fiscal year (FY) 1984-85 (July 1,

Address reprint requests to Peter S. Ammo, PhD, Assistant Professor. Department of Health Care Administration. Baruch College Mount Sinai School of Medicine, City University of New York. 17 Lexington Avenue, Box 313. New York NY 10010 This paper, submitted to the Journal March 3, 1986. was revised and accepted for publication May 30, 1986

1986 American Journal of Public Health 0090-0036/8651 50

1984-June 30, 1985); $8.8 million is projected for FY 1985-86.3

The City chose to contract a number of services to community-based organizations; they included public health education, risk reduction strategies. psychosocial counseling, and home health care services. City funds provide a substantial percentage of the total revenues required by AIDS-related nonprofit groups.

The San Francisco AIDS Foundation (SFAF) was founded in April 1982 as a direct response to the AIDS epidemic. It began as an all-volunteer, grass roots organization composed mainly of gay community leaders and physicians. Initially located in a storefront with a single telephone. the group set up an Information and Referral Hotline that soon became nationally known as a source of accurate information on AIDS.

Beginning in October of 1982 and continuing to the present, the SFAF formally contracted with the San Francisco Department of Public Health (SFDPH) to provide educational services in San Francisco. These services include educational events, telephone services, materials development, and providing the media with accurate information on AIDS. In November 1983, the foundation contracted with the State of California Department of Health Services to provide information and referral services and educational programs to other counties in Northern California. The foundation established a social services department in 1983 to assist persons with AIDS and related conditions in need of emergency services such as shelter, financial assistance, and medical attention.

The Shanti Project was founded in 1974 by Dr. Charles Garfield, a research psychologist, and began as a nonprofit community-based organization to deal with the problems of death and dying. In the fall of 1981, its focus shifted to the AIDS epidemic. In December 1982, Shanti entered the first in a series of contracts with the SFDPH to provide counseling services and a housing program for persons with AIDS.

Hospice of San Francisco (Hospice) was formed in 1978 as a nonprofit corporation to provide physical, emotional, and spiritual care for terminally ill patients and their families

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in San Francisco County. In July 1983, it merged with two other existing nonprofit health care providers-the San Francisco Home Health Service, and the Visiting Nurse Association of San Francisco. Hospice is a subsidiary of its parent corporation, now known as the Visiting Nurse Association of San Francisco. In 1983 at the request of the San Francisco Board of Supervisors (the elected governing body). Hospice entered into a contract with the SFDPH to augment its existing programs to serve AIDS patients. By July 1984, a contract was negotiated to provide home health and hospice care to persons with AIDS. Under the terms of this contract, financing is per project rather than on a fee-for-service basis.

Services Provided by Organizations

Emotional Support/Counseling

The psychosocial needs of AIDS patients are extensive. complex, and unique. Persons with AIDS and AIDSRelated Complex (ARC) are typically young men in the prime of their lives who were recently in good health and are poorly prepared to suddenly face a life-threatening illness. Over 90 per cent of all AIDS patients in San Francisco are between the ages of 20 and 49.7 An AIDS diagnosis is a terrifying experience that raises a number of difficult issues that an AIDS patient must immediately face. These include reactions of employers, families, and friends, treatment options, sexual behavior modification, community fear and ostracism, financial hardship, physical deterioration, depression, and the fear of death itself." Traditional health care systems have been unable or unwilling to develop an integrated approach to these areas of concern and have thus become the major focus of counseling interventions by community-based groups.

Emotional support and counseling services are provided by the Shanti Project whose trained professional and nonprofessional community volunteers offer free long-term counseling to persons with AIDS, their sexual partners, and their families. All counseling is done individually thus far, but the organization is also considering using a group counseling approach. Clients are matched to their counselors within 48 hours of their initial request. The meetings may take place at the client's home, the hospital or outpatient clinic, or any other agreed-upon setting, and they occur as frequently as is mutually suitable. During FY 1984-85, Shanti provided more than 56,000 hours of emotional support counseling to people affected by AIDS in San Francisco (Table 1).

As San Francisco General Hospital, the only acute care municipal hospital in the city, more than 6.000 hours were spent counseling AIDS patients and their visitors by Shanti's staff.

Practical Support

AIDS is a progressively debilitating disease which causes both functional impairment and physical dependency upon others. At intermittent points throughout the disease cycle, normal activities such as cooking, cleaning, doing the laundry, shopping, and getting from one place to another become extremely difficult. The practical support programs of the Shanti Project and Hospice provide volunteers to help with these normal day-to-day activities. During FY 1984-85. Shanti and Hospice provided nearly 17,000 and 2.000 hours of practical support, respectively.

Home-based Hospice Care

During the course of the disease including the final days before death, there may be periods of time when hospital care is unnecessary and treatment at home desirable. Intermittent nursing and social work visits are inadequate to meet the multiple physical and psychosocial needs discussed earlier.* In addition, traditional home care under the Medicare structure generally does not meet the intense needs of persons disabled with AIDS because most patients are not eligible for Medicare.

Hospice's AIDS Home Care Program has organized a multidisciplinary team to provide health monitoring, skilled nursing, and other home health services which enable AIDS patients to maintain themselves at home. This team is comprised of registered nurses, medical social workers. home attendants (home health aides and homemakers), and volunteers, with contract services from physicians, therapists, and licensed vocational nurses when necessary A broad range of services is available for those living independently and those in the terminal stages of their illness. During FY 1984-85, Hospice provided 7,764 days of home care to 165 different persons with AIDS (averaging 47 days per person).

Housing Services

Housing has been a particularly acute problem for persons with AIDS throughout the country. 10.11 Persons with AIDS have been displaced from their homes either because of financial difficulties relating to the burden of catastrophic illness or because of discrimination by landlords, family, or friends fearful of contagion.

By early 1983, increasing numbers of persons with AIDS were losing their homes and the Shanti AIDS Residence Program was established. This program operates low-cost independent housing for San Francisco residents with AIDS. Each tenant has a private bedroom and cooperatively runs the Residence. Although no direct health care services are provided by Shanti, home health care is available at the Residence through Hospice and other community providers. Shanti currently administers eight of these Residences During FY 1984-85, 87 persons spent a total of 7,046 days in a Shanti Residence (averaging 81 days per person).

While long-term housing is handled by Shanti, emergency housing is provided by the San Francisco AIDS Foundation to persons with AIDS/ARC who have been displaced from their homes. Housing is available for up to two weeks during which time social workers assist clients in finding permanent housing.

"Martin JP. Schietinger H. Pratt S. Titus G. A model for providing comprehensive community-based care to people with AIDS, an alternative to institutional care. Paper presented at the annual meeting of the American Public Health Association. Washington, DC. November 1985.

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In lieu of a vaccine, which could be many years away. effective public health education is the best known method to curb the transmission of AIDS. This includes disseminating information to high-risk groups about safe sex practices and the dangers of needle sharing, as well as promoting health activities that bolster the immune system, such as better nutrition, stress reduction, and exercise. The population outside the main risk groups needs information on transmission of the disease in order to reduce unwarranted fears. promote support for effective programs, and prevent further spread of the epidemic.

The paucity of federal resources devoted to public education efforts is of particular concern. During FYS 1984 and 1985, less than 4 per cent of all US Public Health Service AIDS funds were appropriated for information dissemination/public affairs." Thus, much of the burden for providing public health education has been placed on local governments and community-based groups around the coun

1

In San Francisco, public health education is largely the province of the AIDS Foundation, which works closely with the SFDPH, university scientists, and market researchers. There are five components to the education program at the AIDS Foundation: telephone services, educational events, media advertisements, media relations, and material development and distribution (Table 2).

A telephone hotline and a variety of educational events provide the public basic information about AIDS (such as symptoms, risk reduction guidelines, infection control precautions, treatment protocols, and side effects). Telephone referral services are also offered to physicians, screening clinics, and other organizations. Advertisements reach large numbers of people through the print and electronic media. In addition, considerable effort has been spent working with the media to ensure accurate reporting of the epidemic. The final component of the AIDS Foundation's educational services is developing and distributing detailed and informative brochures, flyers, and videotapes.

Social Services

Access to government programs has been facilitated by the social services program at the AIDS Foundation. Social workers act as liaisons between persons with AIDS and

government bureaucracies at the Social Security Administration, General Assistance, and Food Stamp programs to ensure efficient application for benefits when necessary.

A privately funded food bank at the AIDS Foundation provides groceries for those in financial need. Disability benefits are the sole source of funds for many persons with AIDS/ARC. The food bank provides eligible persons with a weekly bag of groceries worth $25-30. At the present time. approximately 150 people use this service each month. Financial Status of Community-based Groups

A detailed picture of the community-based groups' financing is given in Table 3 Clearly local government provides the bulk of support to these groups, with private donations the second largest source of funding. The latter come primarily from individual donors and fund-raising events and to a lesser extent from local business and foundation contributions.

This pattern of funding differs from non-AIDS related community groups in San Francisco. According to a recent study** of nonprofit health care organizations (exclusive of hospitals) in the San Francisco Bay Area. only 10 per cent of revenues came from private donations: 40 per cent came from government sources, primarily at the state and federal level. It is worth noting that only Hospice, the most traditional health care provider of the three groups, suffered a net loss Urban Institute The Nonprofit Sector Project. Washington, DC. unpublished data. 1985

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