Voluntary and Community-Based Organizations
From the early Christians who cared for the victims of third century plagues and earned the name parabolani or ''reckless ones" to the gravediggers of the Black Death and even to the volunteer "sanitary monitors" of the influenza epidemic of 1919, epidemics have always called forth volunteer helpers. With the rise of governmental public health agencies and organized health care, however, the role of volunteers in epidemics became less prominent: it was expected that existing social and government institutions would respond to the needs of the sick and the protection of the well.
The AIDS epidemic once more pushed to the fore the importance of volunteers. Already stigmatized by homophobia, distrustful of governmental intrusions and angry over the slowness of those same government agencies to take action, the gay community quickly began to organize volunteer efforts to help their own. At the same time public health officials and providers of care, frustrated by governmental inaction at high levels and aware of their limited ability to gain the trust of the communities most affected, encouraged the active participation of volunteers. Thus, one of the prominent features of the HIV/AIDS epidemic has been the growth and influence of volunteer groups in providing education, support, and care, as well as advocacy. Even before AIDS had a name, there were volunteers: community-based organizations (CBOs) rapidly appeared, devoted to serving persons with AIDS, raising money for care and for research, fighting discrimination, and providing education to those at high risk.
Observers of the American scene dating back to de Tocqueville and as
recently as Bellah and colleagues (1985) have described Americans' penchant for forming voluntary associations as a way of coping with social problems. As de Tocqueville said (1835-1839 [1945:115-116]): "Americans of all ages, all conditions, and all dispositions constantly form associations … associations of a thousand other kinds, religious, moral, serious, futile, general or restricted, enormous or diminutive. … I have often admired the extreme skill with which the inhabitants of the United States succeed in proposing a common object for the exertions of a great many men and inducing them voluntarily to pursue it". AIDS has been no exception. Community-based organizations are a key component in the care of persons with AIDS. In many communities they play an important role in reducing the length of hospital stays for persons with AIDS by enabling them to be cared for at home by friends and family to the greatest extent medically appropriate.
Little of the research on the costs of providing care for persons with HIV disease or AIDS has looked explicitly at the contribution of volunteers. Arno's studies (1986, 1988) are among the few exceptions. In the 1985 fiscal year, Arno (1986) estimated the value of AIDS-related volunteer labor to be $1.2 million. Some researchers have attributed a drop of more than two-thirds in the annual cost of caring for persons with AIDS in San Francisco (from $150,000 to $40,000) to the contribution of volunteers. According to Arno (1988:57):
[An] important reason to determine the value of volunteer labor is that it is not equally available in all regions of the country or to all groups at risk. Further, as the nature of the epidemic shifts, the supply of volunteers may prove inadequate. Thus, full market value may have to be paid if services now provided by volunteers are to be available, and it is therefore vital to know what those services actually cost.
The volunteer and community-based organizations that formed in response to the epidemic appear to have reached a crucial crossroads as the epidemic moves into its second decade. Doubts have arisen about whether CBOs will be able to meet the needs of increasing numbers of persons with AIDS and about whether the needs of intravenous drug users, their sexual partners, and their offspring can be addressed in ways that replicate the response of the more affluent and organized gay community from which the volunteer movement arose.
THE ORIGINS OF COMMUNITY-BASED SERVICE ORGANIZATIONS
It is often said about AIDS that it shines a harsh light to expose the cracks and flaws in the U.S. system of delivering and financing health care.
The community-based volunteer organizations that sprang up in high-incidence urban centers such as New York City and San Francisco were in part a response to a lack of sensitivity to the health care needs of gay men and lesbians by mainstream medical establishments. Their lineage can be traced to the human rights and consumer movements of the 1960s.
One of the earliest groups formed to respond to AIDS was New York City's Gay Men's Health Crisis. It grew out of meetings in gay playwright Larry Kramer's living room in the summer of 1981, during which a group of gay men discussed the rumors about a new disease that was striking down previously healthy young gay men. In San Francisco, the Kaposi's Sarcoma Foundation was formed in 1981 to respond to the crisis, and by early 1982 volunteers began to staff hotlines, distribute literature, and provide advice to help individuals confront a disease about which very little was known except its fearsome potential consequences.
Two years into the AIDS epidemic, 45 self-help groups had been formed in the United States, mostly organized by gay men (Chambre, 1989). By the end of the first decade of the AIDS epidemic, more than 600 community-based AIDS service-providing organizations had sprung up around the country. A handful of the oldest and largest of those organizations now have annual budgets in the millions of dollars, scores of paid staff, and hundreds of volunteers. Other groups are considerably more modest, yet they make a large difference in the lives of persons with AIDS. Among the hundreds of groups organized in the past few years is a proliferation of AIDS-specific volunteer organizations, many seeking to address targeted needs of persons with AIDS, such as food, health education, housing, income support, or hospice care.
By the time AIDS appeared, the consumer movement had matured, and there was a new-found willingness to confront and question professional authority of all types, including the traditional "paternalism" of medical care. These attitudes were embraced by those with AIDS. Many resented being labeled as "victims" or even "patients,'' preferring instead "persons with AIDS," so as not to convey the same flavor of dependency as "patient" (Grover, 1988; Navarre, 1988; Gayle, 1989).
The decades prior to 1980 had also witnessed a remarkable shift in attitudes toward death and dying on the part of patients and health care practitioners. Earlier, an age-old taboo had precluded the discussion of impending death between patients and their doctors was reflected in the practice of many doctors. A 1961 survey of physicians, for example, showed that 90 percent of them preferred not to inform patients of a cancer diagnosis; they were more likely to disclose a terminal diagnosis to the spouse or other family member and even to enlist them in the deception of the patient. By 1977, however, 97 percent of physicians surveyed said they routinely disclosed cancer diagnoses to patients (President's Commission for the Study
of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982:76, n. 14).
The significant shift in attitudes toward death and dying was partly a result of the writings of Elisabeth Kubler-Ross (1969, 1987), who encouraged an open discussion of death and popularized the ideas that there are stages in the dying process and that it is healthy and therapeutic for dying persons and their loved ones to struggle together toward acceptance of death. This development prepared the way for caring for those dying of AIDS. According to Chambre (1988:15-16):
The sustained response of citizens to care for the dying evident in this epidemic is an historically unique event; in the past caring for the sick and the dying was restricted to plague doctors, to priests and nuns, and to a few heroic and later sainted individuals who were sometimes forced to live in isolation until the epidemic ended. … Actual care of the dying evident in the AIDS epidemic has one precedent, the influenza epidemic of 1918-19, when there was a better understanding of disease transmission and infection control. Unlike AIDS, the response was a short-term collective response to a disaster, quite different from the sustained, long-term efforts that have been required for AIDS [footnotes omitted].
WHO VOLUNTEERS AND WHY
A number of studies of altruism, volunteer motivation, social movements, and volunteer organizations have been conducted in recent years independently of the HIV/AIDS epidemic (Jenkins, 1983; Bellah et al., 1985; Ayers, 1989). Also of interest are studies of gift giving in various cultures. It was the work of anthropologists, dating back to the classic studies of gift exchanges among the people of Melanesia and Polynesia by Mauss (1925), that began to unravel the complexities of the gift relationship. Those studies show that gifts are rarely given without engendering an obligation of reciprocity. Gift givers and receivers are intertwined in a cycle of giving and receiving. Gifts are often given out of a feeling of perceived obligation, and they frequently impose substantial obligation, in turn, on the recipient. Similarly, volunteering is not a unilateral act, a charity that flows only in one direction. Although volunteers may feel uncomfortable admitting that their motivations are not purely altruistic, it should not be surprising, or embarrassing, to find that this is true. Studies of volunteering and giving to charities have revealed a complicated welter of emotions and motivations.
When Titmuss (1970) studied blood donors in the United States and Great Britain, he found that volunteer donors were not spontaneous or purely altruistic. In interviews, donors expressed a wide array of reasons for making a donation of blood that would eventually be transfused into a stranger.
Respondents mentioned reciprocity, gratitude, awareness of need, and response to a personal or public appeal as reasons for giving. More recently, Murray (1991:238) concluded, "AIDS does not appear to have altered in any fundamental way the meaning of gifts of blood for giver or recipient."
Chambre (1988) and Kobasa (1991) have suggested some particular factors that motivate AIDS volunteers. Chambre describes volunteering as "bearing witness," a complex blend of secular and religious responses to a frightening epidemic before which one feels powerless: volunteering is a way of coping with the uncertainty posed by an incurable illness. To understand volunteers' motivations, according to Chambre (1988:7), it is necessary to understand such diverse topics as "cultural definitions of disease and terminal illness, social responses to natural and man-made disasters, social movements, the search for meaning of community, and changes in the meaning of death and dying." Chambre's research calls attention to the parallels between the creation of new organizations and the mobilization of volunteers. She notes (Chambre, 1991:278) that: "although actual concerns or grievances are important in understanding how a social movement evolves, it is also important to point to the historical and cultural context and to an organization's ability to mobilize two key resources: money and people." The rapid growth of the Gay Men's Health Crisis (GMHC) in New York is consistent with mobilization theory. GMHC served as the entry point for large numbers of men into volunteer associations dealing with AIDS, and it also provided access to the funds needed to support such organizations.
Chambre (1991) has examined volunteerism specifically in the context of the AIDS epidemic and drawn some interesting observations regarding the mobilization of volunteers. She notes that volunteering reveals collective behavior during a period of turmoil or social change and the apparent differences between recruitment of volunteers for a new social cause as opposed to recruitment for long-standing and more persistent problems (Chambre, 1991:276):
… it's easier to find volunteers to do difficult work than it is to find volunteers to do easy work. … Most people who volunteer want to do something meaningful, where they know they're making a difference. And in some ways they want to be challenged by what they're doing … they don't hesitate to do something that's going to be hard. In fact, they seek something that's going to be hard.
The trauma of the AIDS epidemic in gay communities fits the model of volunteering for a major natural or man-made disaster—the sense of shock and total devastation motivated the level of response normally found only in extreme emergencies.
In addition to being a way to cope with fears about getting AIDS, and to create or reconstruct a sense of community, Chambre (1991:277) found that volunteering "entails a complex and broad range of motivations that
merit consideration." Almost universally, she found an important reward "was the privilege of working with truly exceptional people. In some settings, this was defined as a transformative experience." She suggests new directions for understanding the meaning of volunteer work and the process of burnout, including a "conscious effort by the organization to clarify the powerful impact that volunteering could have on the volunteers' lives."
Other students of AIDS volunteers have identified similarly complicated motivations. There is, of course, the unalloyed desire to help someone in need. Many volunteers describe the privilege of volunteering and talk about what they learn from those they help. For those who are infected or at risk of HIV, volunteering may be perceived as a way to keep from getting ill. Individuals who are fearful of AIDS may find volunteering a way of coping with and confronting their own fears and mortality. Sometimes the bargaining is explicit: volunteers may seek preferential treatment when they themselves become ill and look to the organization for which they volunteered for support.
The demographics of AIDS volunteers is also interesting. Kobasa (1991) studied 600 new volunteers at New York City's Gay Men's Health Crisis from 1988 to 1990 and found that although most of the earlier volunteers had lost friends or lovers to AIDS, many new recruits simply wanted to help. Gay male volunteers are being supplemented by increasing numbers of lesbians and heterosexual women, whose motivations may be somewhat different.
VOLUNTEERS AND WHAT THEY CONTRIBUTE
It is not immediately obvious what is meant by "volunteer work." In fact, much unpaid work on behalf of persons with AIDS may not even be thought of as volunteering because it takes place in the context of kinship or other personal relationships. A spouse taking care of a dying partner or a gay man taking care of his lover is seldom regarded as volunteering. In fact, in certain contexts there may be more social support for strangers than for family members in caring for individuals. In the foster care setting, strangers are paid for the care of children placed with them, whereas aunts, uncles, or grandparents who take care of young family members might not be eligible for the same type of payments as nonrelated foster care parents (see Chapter 8). What if an individual regularly goes shopping or does housework for a neighbor or friend who is ill? This kind of activity, outside the family circle, may be closer to what is generally thought of as volunteering, although such informal helping is not likely to be captured in surveys.
What is most often meant by "volunteering" in the AIDS epidemic is work performed under the aegis of churches, health care institutions, or local community-based AIDS service organizations. Hospitals have long
made use of the services of unpaid volunteers, although before the advent of AIDS, volunteers mostly performed functions unrelated to direct patient care, such as staffing gift shops and information desks or handing out passes to visitors. Paid administrators of volunteer services tend to be quite low in the hospital hierarchy, and their departments are peripheral in planning for and providing services. In many hospitals the impetus for bolstering volunteer resources for patients with AIDS came from the outside, and funds were provided by foundations or hospital auxiliary agencies. Chambre (1991:283) noted a "gap between the rhetoric of voluntarism and hospitals' commitment to ensuring success of volunteer programs, even in organizations that view themselves as depending on volunteers."
Outside of hospitals, the voluntary, community-based response to AIDS has included an array of health education, social support, and counseling activities. At the beginning of the epidemic in the early 1980s there was a great deal of uncertainty as to the nature of the disease and its etiology, how it might be treated, and how and the extent to which it could transmitted. These uncertainties, combined with the stigma of the association of AIDS with homosexuality and drug use, made it difficult for those afflicted to obtain adequate and dignified social services and medical care (National Commission on AIDS, 1991). The lack of services and the discrimination experienced by persons with AIDS led to the establishment of a host of local, community-based organizations, often comprising mostly gay men.
AIDS telephone hotlines were among the earliest services provided by volunteers. Another noteworthy service development is the "buddy system," in which a volunteer is paired with a person with AIDS to provide emotional and social support services, such as providing transportation to health care appointments and helping with house chores. Buddies are given training and the latest information on AIDS by their organization, and they usually meet in support groups to help each other cope with the experience of working with a dying person, with whom they are likely to establish a strong bond.
The array of services offered by CBOs is designed to ensure that a person with AIDS can remain outside the hospital to the greatest extent possible. Some local AIDS groups are purely service oriented; other, newer groups have political goals and agendas (see below). Many of the local CBOs, as noted, were formed to meet specific needs of persons with AIDS, such as housing, hospice care, or direct financial assistance. In a number of cities, organizations are devoted primarily to providing "meals on wheels"—food for homebound persons with AIDS: God's Love We Deliver in New York City, Cure AIDS Now in Miami, the Chicken Soup Brigade in Seattle, and Project Open Hand in San Francisco exemplify this type of group.
Some CBOs that were in existence prior to the AIDS epidemic have adjusted their goals and expanded their services to include persons with
AIDS. The Shanti Project in the San Francisco Bay Area was formed in the mid-1970s to provide counseling to the dying and the bereaved; its member quickly turned to the needs of those dying from AIDS, and it played a prominent role in San Francisco's strongly volunteer approach to AIDS care. Other hospice projects also initiated in the decade before the epidemic took similar steps to assist with the death and dying of persons with AIDS (Arno, 1986). The Whitman-Walker Clinic in Washington, D.C., which was established in the late 1970s to offer gay-sensitive health care focused on sexually transmitted diseases, has expanded its activities to provide a number of AIDS-specific services. Other, more broadly focused organizations that rely on charitable contributions and volunteer support, such as the Red Cross and the United Way, have incorporated AIDS services into their agendas—although not always painlessly (Perrow and Guillen, 1990).
A survey of the contributions of AIDS volunteers at Cook County Hospital in Chicago provides a representative sampling of volunteer job categories: educator/speaker, legal aid, telephone aid, donation coordinator, crisis intervention, event coordinator, art therapy, pastoral care, hair stylist, and clowns (Boyd, Kuehnert, and Sherer, 1990). In many cases the services are provided by lay volunteers with a modicum of training. In other cases the services are closer to what ancillary medical personnel usually provide. It is not uncommon for family members or lovers of persons with AIDS to perform fairly invasive and complicated medical procedures, including starting and maintaining intravenous lines. As noted in Chapter 3, interventions that used to entail hospitalization are now often provided for persons with AIDS on an outpatient basis or at home.
Although AIDS-related CBOs may have been created by volunteers, the volunteers are not necessarily amateurs. Nor are volunteer services limited to the medical arena. Many AIDS volunteers come from backgrounds in management, accounting, public relations, or community organizing. In many large cities, cadres of volunteer lawyers have been organized under the auspices of CBOs or bar association groups to provide low-or no-cost legal services to persons with AIDS, such as drafting wills, trying to obtain insurance coverage, or filing discrimination claims (Barnes, Greenberg, and Pinksy, 1989; Rivera, 1989; Hansell and Calabrese, 1990).
The provision of psychological support services raises particular concerns about lay versus professional authority and responsibilities. One case in point is "rational suicide" or "assisted suicide." The incidence of suicide among persons with AIDS or HIV disease has been higher than among individuals facing other chronic or terminal illnesses (Marzuk et al., 1988). In fact, many persons with AIDS have asserted their belief in their right to die in a manner of their own choosing, even if it involves enlisting friends, lovers, or caregivers in finding and using the appropriate means. A few
people who have assisted persons with AIDS in taking their lives have gone public in an effort to gain legalization of the practice of assisted suicide (Johnson, 1988). If anything, the role of volunteer service providers in advising clients about taking their own lives is more complicated than for professional health care providers because reciprocal duties and obligations between clients and volunteers may be less clearly defined than the relationship between patients and health care providers. AIDS volunteer organizations, in their volunteer training and program manuals, embrace a wide spectrum of views about the appropriate behavior when a client requests advice or assistance with suicide.
THE RISE OF ADVOCACY
For some people affected by the HIV/AIDS epidemic, traditional volunteering through social service organizations has not provided enough of an outlet. Caring for others has not allowed them to express their anger or vent their frustration at what they believe to be a federal government without a plan to confront the epidemic or a leader to take charge. According to Maddocks (1989:1):
If volunteers operate only within existing government frames, they will tend to support the status quo. If they are encouraged to work outside official bodies, they will begin to develop an independent approach. Within the urban programmes, many young persons become "radicalized," and begin to express negative comments about government, and a greater commitment to change. This may be uncomfortable for governments but it is probably good for society.
In 1987 a loosely organized group of persons with AIDS and their friends and supporters was formed to mount a political challenge, largely at the behest of playwright Larry Kramer. By 1990 the group, known as the AIDS Coalition to Unleash Power (ACT-UP), had about 65 chapters throughout the country (Krieger, 1990). Larry Kramer, in characteristically unvarnished prose, described his reason for helping to found the new group: "I helped found Gay Men's Health Crisis and watched them turn into an organization of sissies. I founded ACT-UP and have watched them change the world" (quoted in Kolata, 1990:A-11). Others who have eschewed social volunteering in favor of political activism have concluded that the continued growth of voluntary organizations allows government to abdicate its responsibilities, crossing the "line separating civic duty and community solidarity from overdependence and governmental irresponsibility" (Arno, 1988:69).
ACT-UP had its roots in the white gay male community, but it soon attracted black and Hispanic gay men, lesbians, and heterosexual women. The largest and most visible ACT-UP chapter is in New York City, where
members' talents in politics, media relations, advertising, and law have been harnessed in an effort to bring public attention to the needs of persons with AIDS and to change the direction of AIDS policy. The tactics of ACT-UP, which frequently involve civil disobedience leading to arrest and the individuals ACT-UP has chosen to target and vilify as enemies of persons with AIDS have sparked an ongoing debate within and without the activist community (see Cohen, 1989; Spiers, 1989). ACT-UP protests—"zaps"—have been mounted against government and public health officials, church leaders, drug company executives, clinical researchers, and science reporters. ACT-UP attacks can be scathing; prominent government clinical researchers, for example, have been labeled Nazis by some ACT-UP protestors.
ACT-UP has waged its fight on a variety of fronts, frequently garnering national attention in the electronic and print press. Protests have included picketing the offices of Cosmopolitan magazine to protest the publication of what was claimed to be misleading information on heterosexual transmission of HIV; campaigning for needle and syringe distribution to intravenous drug users; protesting "mainstreaming" persons with HIV infection into New York City homeless shelters; and demonstrating against sodomy laws in Atlanta, Georgia. Some protests have been directed at particular policies, others at general consciousness raising. Two examples of the latter in San Francisco were protesters' snarling traffic on the Golden Gate Bridge, keeping commuters stranded for hours and disrupting the opening night of the 1989 opera season. In perhaps the most notorious ACT-UP zap, protestors disrupted a mass being celebrated by Cardinal John J. O'Connor at New York City's St. Patrick's Cathedral. During the protest, one activist crushed a communion wafer, which provoked a cry of protest and condemnation from a range of commentators, including New York Governor Mario Cuomo and President George Bush. The President decried ACT-UP tactics in an interview with religious broadcasters.
Much of ACT-UP's energy has been focused on the Food and Drug Administration, where protestors have charged that outmoded regulations and bureaucratic intransigence have impeded the development, licensing, and marketing of drugs to treat HIV infection and associated opportunistic infections. ACT-UP members have also locked themselves in the offices of Burroughs-Wellcome, accusing the drug company of gouging in the pricing of zidovudine (AZT), and they have occupied the offices of clinical researchers at the National Institutes of Health in Bethesda, Maryland.
Such very public protests have been supplemented by more quiet, "inside" work in policy-making councils. A few ACT-UP members have become exceedingly well schooled in the complex and often arcane details of drug development and regulation and the design of clinical trials. ACT-UP representatives have participated in the Institute of Medicine's Drug and
Vaccine Development Roundtable and testified at meetings of the National Commission on AIDS. ACT-UP's Treatment and Data Committee has produced lengthy and detailed critiques of drug development strategies. Members have been influential in provoking biostatisticians to rethink issues of clinical design and in encouraging federal regulators to reconsider how drugs are approved for patients with terminal illnesses. In an unprecedented way, volunteers have become effective participants in this most professional of enclaves, the world of scientific research (see Chapter 4).
An examination of ACT-UP's organizational structure, goals, and tactics raises profound questions about how individuals whose lives are touched or threatened by AIDS ought best respond to the epidemic (Elbaz, 1990). AIDS activists share many dilemmas with other social and political movements in which passions run deep and moral outrage soars, such as the civil rights movement and the pro-life and pro-choice movements in the abortion debate. When is civil disobedience warranted? When is it effective? When do protests cause a counterproductive backlash from policy makers or the public? Ad hominem attacks on clinicians and researchers, for example, have reportedly discouraged some people from participating in AIDS research and treatment efforts. In 1991, the protests took place in the context of tight budgets that dampened increases in funding for AIDS research and treatment, and the public debate on the allocation of money for AIDS versus other diseases has grown louder (see Cimons, 1990; Murphy, 1991). For example, a syndicated journalist and television commentator observed (Krauthammer, 1990:80):
AIDS is now riding a crest of public support, won in the rough and tumble of politics. All perfectly legitimate, and a tribute to the passion and commitment of AIDS activists. But that passion turns to mere stridency when they take to the streets to protest that a homophobic society has been ungenerous and stinting in its response to the tragedy of AIDS.
It is hard to see from where [those who have contacted AIDS from sex or drug abuse] derive the claim to be first in line—ahead of those dying of leukemia and breast cancer and stroke—for the resources and compassion of a nation.
VOLUNTEERS AND COMMUNITY-BASED ORGANIZATIONS IN THE SECOND DECADE
A number of CBOs with roots in the gay culture have faced an identity crisis. AIDS has focused attention on the gay community as never before (Altman, 1988). In some communities, AIDS service organizations and volunteer opportunities for gay men and lesbians have provided a catalyst for a social and cultural network that did not exist previously. Yet AIDS has also tended to overwhelm other issues, such as gay civil rights, political
recognition, and lesbian health. AIDS service groups have on many occasions downplayed their gay roots and links in order to secure funding and support from the wider community. An intense debate continues in the gay and lesbian communities about the appropriate balance between AIDS and other issues of concern (Rist, 1989). The Gay Men's Health Crisis in New York encourages name recognition by the public of its acronym alone, GMHC, and it certainly serves a broader clientele: slightly more than one-half of GMHC's clients are white gay men; approximately 25 percent are black or Hispanics and 15 percent are white women; 10 percent of the clients are intravenous drug users (Perrow and Guillen, 1990). Many leaders of gay-identified AIDS service organizations fear that a stronger stance on gay rights issues will jeopardize funding for AIDS programs. For some programs, this has meant problems in deciding how to address issues of gay sexuality and how far to go in eroticizing safer sex educational materials or in making them relevant to the needs of gay clients.
These conflicts were also reflected in the debates among health and government officials. One outcome was the decision to portray AIDS as an ecumenical, equal opportunity disease, and not a "gay disease." In some quarters, this has provoked criticism from those who have suggested that scientific attention to the risk of heterosexual transmission of AIDS was disproportionate to the real risk and merely a stratagem to garner greater attention and funding (Fumento, 1990). Yet HIV is a risk to many heterosexuals, especially those who have sex with intravenous drug users.
The rapid expansion of CBOs as they try to keep pace with caseloads has resulted in some serious growing pains. It is difficult to plan and develop an infrastructure to support an organization that has doubled its staff and caseload every year for several years. The development skills and energies necessary to get new organizations off the ground may be quite different from the managerial skills necessary to maintain them. Managing an organization with a multimillion dollar budget requires a certain degree of bureaucratization and the development of a corporate culture, which may be at odds with the ethos of volunteering.
Burgeoning caseloads and client needs are posing many planning challenges for AIDS service organizations. Some have responded to the growing need with risky decisions to maintain low reserve balances and make hiring and program decisions based on projected, but unconfirmed, increases in funding (Howell, 1991). In designing programs, there is also the danger that the availability and prospects for obtaining certain types of funding will drive program choices, independent of the actual needs of those to be served. Pediatric AIDS, for example, has a unique cachet, and funds are often available in amounts that are considerably disproportionate to the number of cases of pediatric AIDS (Kirp, 1990; see also Chapter 8). Limited resources also means making allocation decisions involving hard choices
between services to those already infected with HIV and education and prevention efforts to prevent further spread of the virus. This conflict has been complicated by the misperception of some that there is no further need for prevention efforts to foster and maintain behavioral change among gay men. The prospect of achieving beneficial effects through earlier intervention with asymptomatic HIV-infected individuals also forces similarly difficult tradeoffs—how to allocate services among those who are already sick and others who may be able to live healthier longer with the proper support.
The fundraising activities of local AIDS organizations have grown increasingly sophisticated. Perhaps the earliest example of the ability to raise funds on behalf of AIDS charities was a circus sponsored by GMHC at New York's Madison Square Garden in April 1983, which was attended by about 18,000 people. Many cities have a number of annual events to raise funds. A 1990 New York AIDS walk, for example, raised more than $3 million for GMHC, a quarter of its budget for the year (Seltzer and Galvin, 1991).
The private sector has played a significant role in supporting the work of CBOs and other AIDS organizations. Private foundations and corporations have contributed an estimated $120 million to efforts to combat AIDS since 1983 (Seltzer and Galvin, 1991). Initially, many funders were reluctant to get involved in AIDS work because of the stigma associated with the disease. In addition, many foundations have strictures on providing money to ''single disease entities," aware that such a policy would open them up to entreaties from scores of national health charities. The Robert Wood Johnson Foundation made an exception to that policy; to date it has contributed more than $20 million to HIV-related efforts, a large share of which has gone to community organizations. The foundation sought to stimulate groups and agencies with no prior contact with the foundation to submit proposals for innovative programs in HIV prevention. Many other major foundations followed Robert Wood Johnson's lead. Led by the Ford Foundation, the National Community AIDS Partnership was formed in 1988 and it has involved more than 50 foundations and contributed more than $5 million to technical assistance and project funds to encourage the establishment and growth of AIDS-related CBOs.
Groups that have managed to diversify funding streams so as not to become dependent on a single source of money are most likely to continue to thrive. This is especially important because federal and private foundation support for AIDS services has often been "seed money" or a "demonstration grant," not intended to sustain the organization. Many local groups have benefited from seed grants from private foundations, as well as the federal Health Services Research Administration (Howell, 1991; Seltzer and Galvin, 1991). The most successful groups have been able to put together funding packages with contributions from various levels of government, private donations, and money raised from fund-raising events and direct
mail. Newer groups that are starting up in minority communities must compete for a slice of what is often too small a pie. In addition, experience in fund-raising and technical skills are critical, and such experience may not always be readily shared with others. A description in a report on the adequacy of the response to AIDS in Philadelphia contains a passage that would apply in many localities (Philadelphia Commission on AIDS, 1988:26):
A … problem hampering the growth of community-based organizations in Philadelphia has been the existence of conflicts among the groups. The lack of adequate and stable funding has served to intensify their history of philosophical and personal conflicts …. Fragmentation within CBOs has led to some reluctance among some foundations, health care organizations, and others to become involved in what they see as squabbles.
With the number of persons with AIDS on the rise, and with greater opportunities for therapies to delay the onset of symptoms in otherwise healthy HIV-infected individuals, CBOs and local AIDS-specific volunteer organizations need more volunteers and broader sources of funding. AIDS advocates have pressed governments at all levels to increase funding for health care and social support services provided at home. Reimbursing individuals for services provided in the home, however, will depend on the development of uniform standards and quality control mechanisms.
Community-based organizations active in the HIV/AIDS epidemic face some special problems not shared by other organizations that depend on volunteer labor. These problems range from burnout and sickness and death to difficulties in finding rental space for offices or clinics due to unfounded fears of HIV transmission and neighborhood resistance to having gay men or intravenous drug users congregating nearby. Flexible work schedules may be needed for staff and volunteers who are themselves suffering from HIV-related illnesses (Carbine and Lee, 1988). A number of AIDS organizations have experienced problems in obtaining or maintaining health insurance benefits for their employees as a result of the insurance underwriting practices for small groups.
Community-based organizations formed to respond to AIDS among middle-class, white, gay men have recently been forced to reexamine their roles. As the proportion of AIDS cases grows among minorities in poor urban areas and among intravenous drug users and their sexual partners, the need has grown for organizations that reflect and can respond sensitively to these people's needs. This is of critical importance because minorities make up a disproportionate number of persons with AIDS: African Americans account for 12 percent of the U.S. population, yet 29 percent of AIDS cases; Hispanics account for 9 percent of the population, but 16 percent of AIDS cases (Centers for Disease Control, 1992). There have been significant limitations in the ability of AIDS service organizations to respond to their needs, however. Particular problems have been the lack of minority input
in program design and implementation, insufficient minority representation on boards of directors, and inadequate sensitivity to the needs of minorities in training programs for staff and volunteers. To help address these issues, a National Minority AIDS Council was formed by minority-based CBOs in 1987.
The difficulty of tapping volunteer resources to meet the needs of minorities with HIV and AIDS is manifest. Poverty and unemployment make volunteering difficult or impossible for many people in poor communities. AIDS is only a single instance of the "synergism of plagues" that confront poor, minority individuals (Wallace, 1988; see Chapter 1). There are political fears that efforts to direct further attention to AIDS in minority communities will only subject those communities to additional racism and neglect. The stigma associated with homosexuality and intravenous drug use in the Hispanic and African American communities has also stifled the participation of what otherwise might be the most natural place to turn for help in times of need—the church (see Chapter 5). Community organizations also face special barriers in meeting the needs of intravenous drug users and their sexual partners and children (Winkle, 1991). In addition to the exigencies of drug addiction, poverty, unemployment, and poor education, Friedman and colleagues (1987) identified a number of barriers to mobilizing drug users. These include a lack of historical precedent for collective self-organization, criminal penalties for possession and use of drugs, and competition and conflict within the drug subculture. The chaotic lives and social settings of the drug subculture can frustrate the most sincere efforts of outsiders to help.
Despite the particular difficulties faced by intravenous drug users, a few groups, such as New York City's Association for Drug Abuse Prevention and Treatment, have been organized to provide outreach to drug users and to influence drug prevention and treatment policy. Former drug users who are enlisted as street and outreach workers play a special role because they may be able to reach drug users who are inaccessible to health care or public health workers. The stress of such work is substantial, however. Outreach workers must maintain relations with the drug subculture and current users, and they must deal with people who may be sick or dying from AIDS or other health complications of drug use.
As the epidemic settles into communities in which volunteer efforts from the outside may be distrusted as well as difficult to implement and in which volunteer efforts from within are either inhibited by cultural values or impossible to organize, one of the important features of the HIV/AIDS epidemic—the rallying of volunteers to care for their own may be imperiled. The volunteer efforts that have been so significant in providing care, support, and education may not emerge in these communities, leaving these activities to already overburdened and sometimes collapsing social and health
care agencies. In addition, the crucial advocacy that has come from CBOs may be absent, leaving the threatened communities without voice in the places of power.
The involvement of volunteers and voluntary organizations has been one of the defining characteristics of the AIDS epidemic. Although a substantial fraction of Americans has always participated in formal or informal volunteer activities in health, social service, and religious organizations, the contributions of volunteers in the AIDS epidemic have been unique. Individual volunteers and the formation of hundreds of community-based volunteer organizations were a principal way in which society responded to the outbreak of an epidemic disease in a stigmatized population.
The AIDS epidemic created a great demand for volunteer labor and in the process gave rise to questions about the proper role of government and private citizens in responding to a public health crisis. It also gave rise to questions about the proper roles and functions of volunteers in relation to paid or "professional" workers. As a collective behavior, volunteering has been a way of coping with the epidemic; on an individual level, it has proven meaningful not only to those receiving services, but also to the volunteers, people whose complex motivations are only beginning to be recognized and understood.
In the second decade of the HIV/AIDS epidemic, volunteers are likely to continue to play an important role, but the capacity of the voluntary sector to respond to continuing and new needs will be sorely tested. The increasing bureaucracy of the volunteer groups may hinder their flexibility; the decreasing flow of philanthropic funds will limit their efficacy; the growing number of HIV-infected persons who will develop AIDS in this decade will strain their resources; and the heavy emotional demands of the epidemic will exhaust their strength. Above all, the difficulties—social, cultural, and psychological—of moving into, or emerging from, those marginalized and deprived communities where the epidemic is now rapidly spreading, may render the valuable contribution of volunteers futile, precisely where they are most needed.
Altman, D. (1988) Legitimation through disaster: AIDS and the gay movement. In E. Fee and D.M. Fox, eds., AIDS: The Burdens of History. Berkeley, Calif.: University of California Press.
Arno, P.S. (1986) The non-profit sector's response to the AIDS epidemic: community-based services in San Francisco. American Journal of Public Health 76:1325-1330.
Arno, P.S. (1988) The future of voluntarism and the AIDS epidemic. In D. Rogers and E. Ginzberg, eds., The AIDS Patient: An Action Agenda. Boudler, Colo.: Westview.
Ayers, T.D. (1989) Dimensions and characteristics of lay healing. American Journal of Orthopsychiatry 59:215-225.
Barnes, M., D.M. Greenberg, and L. Pinsky (1989) Providing high quality, low cost legal services to people with AIDS: an antidiscrimination law project. AIDS Care 1:297-306.
Bellah, R.N., R. Madsen, S.M. Sullivan, A. Swindler, and S.M. Tipton (1985) Habits of the Heart: Individualism and Commitment in American Life. New York: Harper & Row.
Boyd, L., P. Kuehnert, and R. Sherer (1990) Serving, hope, humor and compassion: implementation of a widely diverse volunteer support program for persons with AIDS/HIV infection at Cook County Hospital, Chicago. Paper presented at the Sixth International Conference on AIDS, San Francisco, June 20-24.
Carbine, M.E., and P. Lee (1988) AIDS into the 90's: Strategies for an Integrated Response to the AIDS Epidemic. Washington, D.C.: National AIDS Network.
Centers for Disease Control (1992) HIV/AIDS Surveillance Report. Atlanta, Ga.: Centers for Disease Control.
Chambre, S. (1988) Responding to Uncertainty by Bearing Witness: Volunteering as Collective Behavior in the AIDS Epidemic, 1981-1988. Center for the Study of Philanthropy, Bernard M. Baruch College. New York: City University of New York.
Chambre, S. (1989) Kindling points of light: volunteering as public policy. Nonprofit and Voluntary Sector Quarterly 18:249-268.
Chambre, S.M. (1991) The volunteer response to the AIDS epidemic in New York City: implications for research on voluntarism. Nonprofit and Voluntary Sector Quarterly 20:267-288.
Cimons, M. (1990) AIDS: a funding backlash surfaces. Los Angeles Times June 18:A-1.
Cohen, C. (1989) Militant morality: civil disobedience and bioethics. Hastings Center Report 19:23-25.
de Tocqueville, A.D. (1835-1839) Democracy in America, Vol. II. New York: Alfred A. Knopf, 1945.
Elbaz, G. (1990) ACT-UP survey. Paper presented at the Sixth International Conference on AIDS, San Francisco, June 20-24.
Friedman, S.R., D.C. Des Jarlais, J.L. Sotheran, J. Garber, H. Cohen, et al. (1987) AIDS and self-organization among intravenous drug users. The International Journal of the Addictions 22:201-219.
Fumento, M. (1990) The Myth of Heterosexual AIDS. New York: Basic Books.
Gayle, J.A. (1989) The effect of terminology on public consciousness related to the HIV epidemic. AIDS Education and Prevention 1:247-250.
Grover, J.Z. (1988) AIDS: key words. In D. Cirmp, ed., AIDS: Cultural Analysis/Cultural Activism. Cambridge, Mass.: MIT Press.
Hansell, D., and T. Calabrese (1990) Community-based legal service delivery to HIV-affected communities of color. Paper presented at the Sixth International Conference on AIDS, San Francisco, June 20-24.
Howell, E.M. (1991) The role of community-based organizations in responding to the AIDS epidemic: examples from the HRSA service demonstrations. Journal of Public Health Policy 12(2):165-174.
Jenkins, J.C. (1983) Resource mobilization theory and the study of social movements. Annual Review of Sociology 9:527-553.
Johnson, T. (1988) A "humane and dignified death." ABC News "Nightline" transcript, March 31. Journal Graphics, New York.
Kirp, D. (1990) The politics of pediatric AIDS. The Nation May 14:666-668.
Kobasa, S.C. (1991) AIDS volunteering: links to the past and future prospects. In D. Nelkin,
D.P. Willis, and S.V. Parris, eds., A Disease of Society: Cultural and Traditional Responses to AIDS. New York: Cambridge University Press.
Kolata, G. (1990) AIDS advocates find a decline in private funds. New York Times August 7:A-11.
Krauthammer, C. (1990) AIDS: getting more than its share? Time June 25:80.
Krieger, L.M. (1990) Ideology clash underlies split within ACT-UP. San Francisco Chronicle October 14:B-1.
Kubler-Ross, E. (1969) On Death and Dying. New York: Macmillan.
Kubler-Ross, E. (1987) AIDS: The Ultimate Challenge. New York: Macmillan.
Maddocks, I. (1989) Volunteering for the care of patients with the acquired immunodeficiency syndrome (editorial). Medical Journal of Australia 151:1-2.
Marzuk, P.M., H. Tierney, K. Tardiff, E.M. Gross, E.B. Morgan, et al. (1988) Increased risk of suicide in persons with AIDS. Journal of the American Medical Association 259:1333-1337.
Mauss, M. (1925) The Gift: Forms and Functions of Exchange in Archaic Societies. New York: Norton, 1967.
Murphy, T.F. (1991) No time for an AIDS backlash. Hastings Center Report 21(2):7-11.
Murray, T.H. (1991) The poisoned gift: AIDS and blood. In D. Nelkin, D.P. Willis, and S. Parris, eds., A Disease of Society: Cultural and Institutional Responses to AIDS. New York: Cambridge University Press.
National Commission on AIDS (1991) America Living with AIDS: Transforming Anger, Fear and Indifference into Action. Washington, D.C.: National Commission on AIDS.
Navarre, M. (1988) Fighting the victim label. In D. Crimp, ed., AIDS: Cultural Analysis/Cultural Activism. Cambridge, Mass.: MIT Press.
Perrow, C., and M.F. Guillen (1990) The AIDS Disaster: The Failure of Organizations in New York and the Nation. New Haven, Conn.: Yale University Press.
Philadelphia Commission on AIDS (1988) Report to the Community. Philadelphia, Pa.: Philadelphia Commission on AIDS.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982) Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship. Washington, D.C.: U.S. Government Printing Office.
Rist, D.Y. (1989) Exchange. The Nation 248 (June 19):834.
Rivera, R.R. (1989) Lawyers, clients, and AIDS: some notes from the trenches. Ohio State Law Journal 49:883-928.
Seltzer, M., and K.M. Galvin (1991) Organized philanthropy's response to AIDS. Nonprofit and Voluntary Sector Quarterly 20:249-266.
Spiers, H.R. (1989) AIDS and civil disobedience. Hastings Center Report 19:34-35.
Titmuss, R.M. (1970) The Gift Relationship: From Human Blood to Social Policy. London: Allen & Unwin.
Wallace, R. (1988) A synergism of plagues: "planned shrinkage," contagious housing destruction and AIDS in the Bronx. Environmental Research 47:1-33.
Winkle, C.R. (1991) Inequity and power in the nonprofit sector: a comparative analysis of AIDS-related services for gay men and intravenous drug users in Chicago. Nonprofit and Voluntary Sector Quarterly 20:313-328.