The HIV/AIDS grants economy in New York City, 1983-1992.

Abstract

GrantWatch Health AffairsVol. 15, No. 3 The HIV/AIDS Grants Economy In New York City, 1983-1992Susan M. Chambre AffiliationsBaruch College, City University of New YorkPUBLISHED:Fall 1996Free Accesshttps://doi.org/10.1377/hlthaff.15.3.250AboutSectionsView PDFPermissions ShareShare onFacebookTwitterLinked InRedditEmail ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits TOPICSHIV/AIDSGrantsNonprofit statusMedical researchGrantmakersClinical careLegal and regulatory issuesCase studiesGovernment programs and policiesData sets D espite foundations ' critical role in policy making, there is limited research on how foundations respond to health policy issues. Contributing 10 percent of nongovernmental support to nonprofit organizations and greatly overshadowed by public funding, private foundations are important in identifying the national agenda, developing innovative solutions, and providing expertise, legitimacy, and investment capital. 1 This essay considers the evolution of the private human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) grants economy in New York City between 1983 and 1992 by tracing the funding streams, organizations, and projects that made up this economy. 2 Funding relationships are conceptualized as social and economic exchanges within changing organizational populations. Recipients seek financial support for ongoing and new projects that are consistent with their missions; funders seek recipients that will spend funds in an appropriate, responsible fashion consistent with the funders' missions. 3 Although it is difficult to disaggregate foundation funding from other funding sources, private funding for HIV/AIDS has a distinctive history of its own that illuminates funder/recipient exchanges and the evolution of organizational networks in a new policy domain. New York City is an epicenter with a complex and decentralized health care and social service system. Between 1981 and the end of 1995, 81,604 New Yorkers were diagnosed with AIDS (16 percent of all cases in the United States); 170,000 New Yorkers were estimated to be HIV-positive in 1993. 4 New York City's nonprofit sector includes nearly 20,000 organizations. One in ten U.S. foundations are in New York City, and these grant-makers distribute one-fifth of all foundation funds. While many discussions of health policy examine large, well-known, national foundations, it is important to examine the role of local funders, since New York foundations distribute two-fifths of their funds to organizations located in New York City, and nonprofits obtain two-thirds of their grants from foundations in that city. 5Methodology The discussion relies on a data set that includes all HIV/AIDS grants that were awarded to organizations for projects in New York City between 1983 and 1992, the most recent year for which complete information could be obtained. This period was a time when public funding increased: Between $110 million and $148 million was spent on AIDS in fiscal year 1986, and the amount spent in 1992 has been estimated at $1.5 billion. 6 The study ends before two additional infusions of federal funding from the Ryan White Comprehensive AIDS Resources Emergency (CARE) and the Housing Opportunities for Persons with AIDS Acts were given to HIV/AIDS projects in New York City. The study drew from a number of data sources to make certain that virtually all grants were included: The Foundation Center's online database (available through DIALOG) and its directories of AIDS grants published in 1987,1988,1991, and 1993; AIDS funding directories compiled by Welfare Research, Inc.; and donor lists in organizations' publications and annual reports. Funders were contacted by phone and letter, and annual reports and tax returns (Form 990PF) were reviewed for all available years. The data set is more comprehensive than other sources since it includes grants larger than $300 from all funders, including private foundations and public charities. In contrast, The Foundation Center's database is restricted to the thousand largest foundations and to grants of more than $10,000. Small grants are significant for substantive and symbolic reasons: Often they help to launch an organization, and they might mark the beginning of a significant donor/recipient relationship.A total of 156 foundations and public charities gave AIDS grants totaling $98 million between 1983 and 1992. Nearly one-tenth of these funds, $8.2 million, went to intermediary funders, which both raise and distribute money. To the extent possible, the database was restricted to efforts focused in New York City; it includes grants for nationwide projects with a clear impact in the city and excludes grants to organizations outside the city's geographic boundaries. Each grant was coded by its main objective or the organization's overall mission, and all grants were treated as if they were paid out in the year in which the award was made, unless other information was available. The dating of a grant, measurement of the overall volume of funding, and assessments of grants' impact are all imprecise, because foundations vary in the procedures they use to pay out grants and because organizations might require several years to complete a project.Qualitative data also were collected; these included descriptions of foundations' missions and philosophies that were described in annual reports, requests for proposals, and descriptions of program initiatives. Fifteen in-person, unstructured interviews were conducted with key informants—mainly foundation staff. As is customary in sociological research, the interviewees were promised confidentiality, which enabled them to speak candidly.The HIV/AIDS Grants EconomyEmergence and Structure. Soon after the first AIDS cases were reported in June 1981, gay men in New York, Los Angeles, and San Francisco began to form organizations, raise money, and volunteer. In July 1981 eighty men gathered to raise money for medical research. These men formed the nucleus of Gay Men's Health Crisis (GMHC), the first AIDS organization in the world. By the end of 1982 GMHC was offering information, was providing services, and had a budget of $165,000. GMHC's budget grew rapidly, to $783,000 in 1983 and $1.4 million in 1985. A second organization, the AIDS Medical Foundation, had raised $357,000 by the end of 1985 and $1.85 million in 1986. It merged with the Los Angeles-based American Foundation for AIDS Research, to become AmFAR. Compared with individuals' donations to GMHC and AmFAR, foundations provided modest support, primarily because individual giving is less constrained by the formal procedures of foundations, which are accountable to donors and boards. There were four foundation grants totaling $166,000 in 1983; support declined in 1984, increased tenfold in 1985, and rose steadily throughout the decade, except for a decline in 1989. The increased support beginning in 1985 parallels the larger society's response, since that year marked a turning point with more news coverage, greater pub-he awareness, and increased public concern, along with a rise in the number of AIDS cases. 7 Between 1983 and 1992 New York City's private HIV/AIDS grants economy grew in size and complexity ( Exhibit 1 ). Fifty different foundations had given grants by the end of 1987. By 1990 the cumulative number of funders had more than doubled. After 1990 relatively few funders entered the grants economy, but overall support and the number of new grant seekers continued to increase. Almost 400 recipients had obtained a grant by the end of 1992—221 of them in 1992. The composition of the recipient population has changed more than that of the funders: 42 percent of recipients did not receive an HIV-AIDS grant, and 23 percent of funders did not award such grants, in 1992. Exhibit 1 Indicators Of The Development Of The HIV/AIDS Grants Economy In New York City, Selected Years, 1983-1992Grants198319861989199019911992New grants$166,000$3,897,593$12,389,037$14,694,983$19,790,004$21,423,618Cumulative grants166,0004,959,43442,161,24256,856,22576,646,22998,069,847Grants to inter mediary funders−25,000908,6503,012,5331,200,1801,382,665Direct grants to recipients166,0003,872,59311,480,38711,685,45017,984,09719,392,919Grants distributed by intermediary funders50,000770,2462,383,2662,350,1072,753,6334,944,284Funders distributing $20,000 or more between 1983 and 1992New funders312242375Cumulative funders32799122129134Current funders32480103103103Number of recipientsNew recipients42357606672Cumulative recipients442185245311383Current recipients436126155183221SOURCE: Database constructed by the author. NOTES: HIV is human immunodeficiency virus. AIDS is acquired immunodeficiency syndrome. The HIV/AIDS grants economy is diverse and decentralized. Grantees include organizations with varied objectives, ideologies, histories, budgets, client populations, locations, staffing patterns, and mixes of funding sources. Its decentralized nature is apparent in the large number of AIDS-related organizations, most of them quite small. 8 This is consistent with the nature of the nonprofit sector in New York City: One in five nonprofits operate on a yearly budget of less than $30,000, and about the same proportion spend more than $1 million a year. 9 The capacity to create new organizations may be one reason for the sector's vitality. 10 A large number of funders and recipients dominated by a few large organizations characterizes the distribution of funds from 1983 to 1992 for HIV/AIDS projects. Three foundations—The Aaron Diamond Foundation, The Robert Wood Johnson Foundation (RWJF), and The New York Community Trust— accounted for 38 percent of all grants ( Exhibit 2 ). Sixty-two percent of funds were distributed by the top ten donors, and 77 percent by the top twenty. By the end of 1996 the largest source of AIDS funding, the Diamond foundation, will, by design, cease to exist. Three recipients received 21 percent of all funds, and 62 percent of grant dollars were given to twenty organizations ( Exhibit 3 ). Five of the ten largest recipients were hospitals or medical schools, and 40 percent of funds were earmarked for medical research or for acute and long-term medical care ( Exhibit 4 ). Exhibit 2 Total Grants By Funders Giving $500,000 Or More To HIV/AIDS Projects In New York City, 1983-1992FunderTotal grantsPercent of totalCumulativeAaron Diamond$21,577,66322.0%Robert Wood Johnson8,678,1868.9New York Community Trust/New York City AIDS Fund7,209,6977.438.3%Kroc5,005,6735.1AmFAR4,824,3574.948.3United Hospital Fund3,160,7173.2Edna McConnell Clark2,944,0003.0DIFFA2,797,2372.9Broadway Cares2,346,9142.4United Way2,321,3062.462.2L and R. Rudin2,139,0002.2Moses2,002,0002.0Samuels1,963,6942.0Rockefeller Brothers1,241,0001.3W.T. Grant1,227,0001.3Joyce Mertz-Gilmore1,134,5001.2Geffen1,103,0001.1Public Welfare1,069,4001.1Altman1,002,0001.0Kresge939,0001.076.0New York865,8000.9Starr835,0000.9Mapplethorpe829,2500.9J.M. Kaplan776,5000.8Prudential776,4900.8Sloan762,0000.8Ford722,5000.7F. and E. Cummings708,0000.7Morgan Guaranty670,0000.7Robin Hood667,7060.7Calder651,3250.7Monell650,0000.7Metropolitan Life642,8670.7Rapoport617,5500.6Van Ameringen605,0000.6Rubinstein597,0000.6 Total, major funders a$86,063,33287.7%Total, all funders$98,069,847100.0%SOURCE: Database constructed by the author. NOTES: HIV is human immunodeficiency virus. AIDS is acquired immunodeficiency syndrome. aMajor funders are those giving $500,000 or more.Exhibit 3 Top Forty Recipients Of HIV/AIDS Grants In New York City, 1983-1992RecipientTotalPercentCumulative percentDiamond Research Center$ 9,516,7269.7%AmFAR6,474,2276.6Gay Men's Health Crisis4,576,5614.721.0%American Civil Liberties Union3,967,7764.1Montefiore Hospital3,859,6293.929.0Einstein College of Medicine3,333,1453.4Bronx Municipal Hospital Center3,148,1733.2Health Research, Inc.3,107,3643.2New York University Medical Center2,775,4892.8Mt. Sinai Hospital2,401,0792.544.0Village Nursing Home2,259,6002.3Columbia University2,202,0782.3Diamond Postdoctoral Program2,014,6282.1Planned Parenthood1,978,0002.0Academy for Educational Development1,977,1512.0St. Luke's-Roosevelt Hospital1,948,9682.0Public Health Research Institute1,642,5001.7St. Vincent's Hospital1,407,7501.4Black Leadership Commission on AIDS1,227,8401.3God's Love We Deliver1,098,8501.162.1Community Research Initiative1,016,0631.0Actor's Fund of America980,2351.0AIDS Resource Center931,1261.0Rockefeller University857,0050.9Momentum Project830,4710.966.8Beth Israel Medical Center733,0000.8Cornell University Medical Center726,3700.7Citizens Commission on AIDS722,6830.7New York City AIDS Fund720,0000.7Correctional Association684,5000.7Lambda Legal Defense Fund675,6500.7Bronx Lebanon Hospital639,6560.7Medical and Health Research575,0000.6Housing Works573,0000.6Upper Room AIDS Ministry538,0000.6Latino Commission on AIDS536,5000.6New York Blood Center525,7750.5St. Clare's Hospital515,4440.5Equity Fights AIDS493,6400.5Funders Concerned About AIDS480,3400.5Total, top forty recipients$74,671,99276.2%Total, all recipients$98,069,847100.0%SOURCE: Database constructed by the author. NOTES: HIV is human immunodeficiency virus. AIDS is acquired immunodeficiency syndrome. Exhibit 4 Purpose Of HIV/AIDS Grants In New York City During Major Periods, 1983-1992Purpose 1983-1986 1987-1989 AmountPercentAmountPercentMedical research$1,484,48229.9%$10,158,36227.3%Prevention and services1,276,92325.87,350,40019.8Medical and long-term care1,529,08930.87,859,31421.1Organizational development351,4907.12,975,0018.0Intermediary funders46,4300.92,099,3505.6Advocacy, planning, and policy coordination1,3000.01,236,5463.3Legal advocacy and services41,0000.81,283,7863.5New York City schools prevention————Social science and policy research61,2201.2949,8482.6Prisoners' advocacy and services40,0000.81,507,5004.1Meals and nutrition5,0000.1478,1481.3Public information and awareness85,0001.7521,0001.4Information and referral22,5000.5560,5031.5Alternative, holistic, pastoral counseling15,0000.3221,5500.6Other−−5000.0Total$4,959,434100.0%$37,201,808100.0%1990-1992All yearsMedical research$14,164,84525.3%$25,807,68926.3%Prevention and services15,354,38427.523,981,70724.5Medical and long-term care4,060,3507.313,448,75313.7Organizational development5,495,6889.88,822,1799.0Intermediary funders3,742,9516.75,888,7316.0Advocacy, planning, and policy coordination3,385,2736.14,623,1194.7Legal advocacy and services3,168,8505.74,493,6364.6New York City schools prevention2,514,6514.52,514,6512.6Social science and policy research1,255,3762.32,266,4442.3Prisoners' advocacy and services614,0001.12,161,5002.2Meals and nutrition827,3501.51,310,4981.3Public information and awareness519,4500.91,125,4501.2Information and referral440,4370.81,023,4401.0Alternative, holistic, pastoral counseling312,0000.6548,5500.6Other53,0000.153,5000.1Total$55,908,605100.0%$98,069,847100.0%SOURCE: Database constructed by the author. NOTES: HIV is human immunodeficiency virus. AIDS is acquired immunodeficiency syndrome. Some observers suggest that intermediary funders, which raise and distribute funds, might divert support that otherwise would be given directly to organizations. There is no evidence that this occurred; sixty-two funders gave money to the four largest intermediaries (AmFAR, Design Industries Foundation for AIDS [DIFFA], the New York City AIDS Fund, and the United Way). For thirty grant-makers, their first or only AIDS grant(s) went to an intermediary, and only five redirected their support toward intermediaries. Although it is difficult to assert causality, these data raise the possibility that intermediary funders expanded the range of donors. As a group, they distributed more money to organizations ($15.7 million) than they obtained from foundations in New York City ($7.9 million). The notable exception is AmFAR, which distributed less money to organizations in the city than it received from local foundations, a reflection of AmFAR's national significance and New York City's importance as the headquarters for national and international foundations.Evolutionary Stages In FundingMajor shifts in the level and distribution of private funds reflect changes in the amount of public funding, the number and types of AIDS cases, and the course of the epidemic. Between 1983 and 1986 there was limited public concern and a slow response by federal, state, and local officials; the private HIV/AIDS grants economy was just beginning to emerge. During a second period (1987-1989) the number of cases increased, more organizations and programs were established, and recognition of the need for more prevention and services grew. Between 1990 and 1992 the number of funders was stable, and private funding continued to rise while public funding grew more rapidly. Anecdotal information and a closer look at individual grants suggest the role that private funding played in the development of AIDS-related policies, services, and research.1983-1986: Grantmakers as Pioneers. For several years few Americans viewed AIDS as an important social issue because of the small number of cases and the sense that it was concentrated among stigmatized and socially marginal groups. 11 Most private donations were from gay donors motivated to give money by the impact of the epidemic on their communities and a sense that the issue was being ignored. A major account of the development of support by foundations recounts that many early grants were made primarily because of a staff member's personal concern. 12 In some instances, promoting support for HIV/AIDS projects within a foundation revealed or confirmed a person's sexual orientation. The first four AIDS grants in 1983 were given by three foundations to organizations that existed before the epidemic. The increase in AIDS funding from 1984 to 1985 is associated with the beginning of several new activities designed to fight AIDS: more medical, social, and legal research on AIDS being reported at conferences and in journals; new health and social service programs; emerging issues that required action, such as the civil and legal rights of people with AIDS; and the development of innovative efforts such as the first AIDS volunteer program in the city, which was at Roosevelt Hospital and was supported by the United Hospital Fund. The following year, 1986, represents a major turning point in the development of HIV/ AIDS policy at the local level and the growth of public contracts with nonprofit organizations. 13 Growing public awareness and concern were evident in increased attention by the mass media, which was fueled by a growing sense that the epidemic was involving “innocent victims,” including children and hemophiliacs, and by the death of screen actor Rock Hudson, the first person many Americans had heard of who had died of AIDS. 14 The federal government was issuing its first estimates indicating that nearly one of every 250 persons had been infected, and scientific information about prevention was becoming more definitive. The number of diagnosed AIDS cases was expanding, and cost estimates were painting a grim future. In a context of increased public concern but lack of leadership by the federal government, RWJF in early 1986 announced a four-year AIDS Health Services Program, which was targeted at the twenty-one metropolitan areas with the largest numbers of AIDS cases. Its $17.2 million commitment was remarkable, considering that total support by foundations had been $1.3 million between 1983 and 1985. 15 Its request for proposals noted that the number of AIDS cases would double during 1986, and the anticipated inpatient costs for some-one with AIDS, estimated at $147,000 per person (an amount that may have been overstated), could be reduced by the use of outpatient services and community-based care. 16 This conclusion was based on the situation in San Francisco, where inpatient costs averaged $29,000 in 1986, according to RWJF. The announcement of the AIDS Health Services Program was a turning point in the perception of AIDS as a fundable issue. RWJF's support lent legitimacy to AIDS as a health policy issue. 17 Between 1983 and 1986 private funding was critical to the development of a system of medical care for AIDS patients. Hospital administrators were concerned about the economic impact and stigma of caring for AIDS patients. 18 Some of these fears were alleviated in the mid-1980s, when New York State began to provide enhanced Medicaid reimbursement and financial support for a network of AIDS centers, a policy reflected in decreased private funding for medical care. Private funds also played a central role in the development of AIDS-related community organizations for African Americans and His-panics. In 1985 the New York City Council of Churches convened a conference on AIDS in Minority Communities and later sponsored the Minority AIDS Task Force. In 1985 and 1986 The New York Community Trust and the New York Foundation provided grants to the Association for Drug Abuse Prevention and Treatment (ADAPT), the Minority AIDS Task Force, and the Hispanic AIDS Forum. Although each group received a modest amount—a total of $130,000 was awarded to all three—the support enabled them to obtain tax-exempt status and hire consultants or part-time staff. Once public funding increased, all three became major providers of preventive and other services. 191987-1989: Developing Policies and Services. The greater size and complexity of the HIV/AIDS grants economy reflect events outside and inside New York's foundation community. On a national level, the RWJF initiative lent legitimacy to AIDS, which was further amplified by a Ford Foundation-sponsored report on foundation funding and its initiation and support of the National Community AIDS Partnership (NCAP) (now called the National AIDS Fund) and Funders Concerned About AIDS (FCAA). NCAP expanded private funding by establishing local AIDS funds, including the New York City AIDS Fund. 20 In New York there was more informal and formal interaction among grant-makers about AIDS, funding increased, and the number of active funders and recipient groups expanded considerably. More AIDS cases were being diagnosed, persons with AIDS were living longer, and people were seeking testing, counseling, and care for HIV illness, not just AIDS. As more funds from New York State were devoted to medical care for AIDS patients, the complexity of services expanded to include day treatment, congregate and scatter-site housing, congregate and home-delivered meals, and a broader range of recreational and social services. The greater differentiation of activities is also evident in a considerable rise in support for advocacy, planning, and nonmedical research. Several foundations sponsored the Citizens Commission on AIDS, which refocused discourse on the epidemic by highlighting its impact on the city's health care system, noting ways to respond to AIDS in the workplace, and articulating the implications of the growing link between HIV and substance abuse. 211990-1992: Aids as an Inner-City Problem.Between 1990 and 1992 AIDS funding continued to increase, and the number of recipient organizations expanded more rapidly than the number of funders. Changes also took place in the allocation of funds. Relatively more was directed toward prevention and services, particularly for women, families affected by HIV/AIDS, and adolescents. Close to half of the $5 million for prevention was for implementation and evaluation of the condom availability program in New York City public schools. More funds were directed toward policy development and advocacy, particularly for persons of color. The Black Leadership Commission on AIDS, the Latino Commission on AIDS, the Orphan Project, and the New York AIDS Coalition, a statewide advocacy organization, received support. This shift toward greater support for advocacy and policy is consistent with foundations' role to provide investment capital for social innovations. In 1993, for example, Am-FAR provided funding for needle exchange programs, a controversial intervention that researchers were increasingly endorsing.What Accounts For Patterns Of Foundation Support?The private HIV/AIDS grants economy increased in size and complexity in the first decade of the epidemic. Although changes in the level and distribution of private funding mirror changes in the epidemiological, medical, and policy context, they also reflect processes that are internal to the foundation community. Measured in dollars, funding levels are an imperfect indicator of foundations' willingness to support an emerging policy domain. Grant getting and grant making are not merely objective transactions involving two sets of actors seeking matches between the needs of recipients and the interests of donors—the process depended on seeing HIV/AIDS as fundable and on organizations being worthy and fiscally responsible. In a foundation originally committed to medical research, staff educated the donor and the board to “look more broadly at the epidemic” and recognize “a broader need.” The evolution of the HIV/AIDS grants economy also illustrates the impact of social networks and reference groups, since foundation support was influenced by the entry of a core of innovative grantmakers that served as role models. RWJF played this role nationally. On the local level, meetings and informal networking by foundation staffs led to exchange of information about funding opportunities and potential grant recipients. Several organizations, including the New York Regional Association of Grantmakers (NYRAG) and FCAA, provided the institutional framework for the development of a network of AIDS funders. 22 A long-term board member of FCAA pointed out in an interview that many foundation staff “who wanted to move their boards” have used other foundations to come in and educate their boards and donors. Funding was contingent on recognizing HIV/AIDS as a fundable issue where support for innovative projects would make a difference. The president of The Charles A. Dana Foundation noted in 1986: “Those early AIDS statistics were low figures in retrospect…. It was relatively easy to identify some of the emerging problems, but it was very unclear how and where a grantmaker could make [an] … appropriate response.” 23The evolution of the HIV/AIDS grants economy rested on the entry of interested donors and appropriate, fiscally responsible recipient organizations. One foundation executive, who started an AIDS initiative in 1987, spent a considerable amount of time networking with potential donors to identify appropriate recipients of the initiative's funds. Some groups, such as GMHC, did not seek foundation support because they had individual donors and government contracts.Anecdotal information concerning grants, as well as interviews with foundation staff, indicate that the fundability of a project or organization is governed by three interrelated factors: its relevance to the funders' mission, the fact that the activity or service is needed and fills a gap, and the perception that the funds will be used responsibly. The following case studies of three major organizations illustrate how these criteria govern decision making by grantmakers.Case Study 1. Foundations played a critical role in the expansion of God's Love We Deliver. In 1986 this organization consisted of a handful of volunteers who delivered meals, donated by local restaurants, to homebound persons with AIDS. Several grants in 1987 and 1988 enabled the organization to rent space and build a kitchen. This support, combined with funding from New York State for nutrition programs and with individual donations, enabled the organization to expand its scope from one to two meals per day and from delivery to a small number of neighborhoods to delivery citywide. Program officers offered guidance and technical assistance and introduced the group's founder to a professional fund-raising consultant and to major donors. God's Love We Deliver received 70 percent of its 1992 income from private sources. 24Case Study 2.The Upper Room AIDS Ministry filled another gap by serving homeless people of color. Founded in 1988, it received $538,000 from foundations by 1992. Once the organization was considered established, its support decreased from $391,000 in 1991 to $125,000 in 1992. One foundation executive explained that the foundation did not continue to support the ministry because “they were no longer a little hand-to-mouth hungry organization of volunteers doing something out of their back pockets.”Case Study 3.A third group, founded in the mid-1980s, illustrates the importance of perceived fiscal responsibility when evaluating the worthiness of a recipient. This group received nearly $200,000 during a three-year period in th