Special Interest Groups

• WHAT IS ITS MISSION?
• HOW IS IT STRUCTURED?
• PRIMARY FUNCTIONS
• PROGRAMS
• BUDGET INFORMATION
• HISTORY
• CURRENT POLITICAL ISSUES
• BIOGRAPHY: Ryan White
• FUTURE DIRECTIONS
• GROUP RESOURCES
• GROUP PUBLICATIONS
• BIBLIOGRAPHY

ESTABLISHED: 1985
EMPLOYEES: 57
MEMBERS: None
PAC: None

Contact Information:
ADDRESS: 120 Wall St. 13th Flr. New York, NY 10005
PHONE: (212) 806-1600
TOLL FREE: (800) 392-6327
FAX: (212) 806-1601
URL: http://www.amfar.org
CHAIRMAN: Mathilde Krim, Ph.D.

WHAT IS ITS MISSION?

According to the group, the mission of the American Foundation for AIDS Research (AmFAR) is "to prevent death and disease associated with HIV/AIDS and to foster sound AIDS-related public policies." AmFAR contends that the HIV/AIDS epidemic is the greatest health crisis of the twentieth century—by 1998 more than 600,000 Americans had been diagnosed with the disease since it was detected in the early 1980s, and at least another one million Americans were believed to be infected. AmFAR carries out its fight against this epidemic by raising funds for AIDS research and by helping to shape AIDS-related legislation.

According to an article about AmFAR in Frontier (June 14, 1996), the organization often appears to have a contradictory image. To many people, AmFAR represents glitz and glamour—an organization that makes use of celebrity support and endorsement. However, while actress Elizabeth Taylor does serve as AmFAR's national chairperson, the organization's founder is Dr. Mathilde Krim. For many AIDS activists, AmFAR represents a critical funding source for innovative AIDS research.

HOW IS IT STRUCTURED?

AmFAR is headed by a 31-person board of directors with members that include doctors, pharmacologists, and religious leaders. Committees that function under the board include: Basic Research, Finance, Fund-raising/Development, Prevention/Science, Public Policy, External Relations, Clinical Research, and Global Initiatives. These committees provide guidance to the organization's staff. AmFAR has no membership; funds are solicited through events, fund-raising efforts, and direct mail.

AmFAR has three offices, one in New York City, New York; Los Angeles, California; and Washington, D.C. AmFAR's Washington office is also known as the AmFAR Public Policy Office and was established in 1991 to give the organization a permanent and influential presence in the nation's capital. The office is run by a public policy director, who manages daily operations, and is given overall guidance by the Public Policy Committee of AmFAR's board of directors.

PRIMARY FUNCTIONS

AmFAR carries out its mission by raising funds for AIDS research and conducting advocacy and public information programs. AmFAR holds AIDS fund-raisers on a regular basis—for example, the group planned 12 fund-raisers between the period of October 1997 and June 1998. Fund-raisers are organized at the local and state levels, and make use of a variety of themes and settings to broaden fund-raising opportunities. In July 1997 Honeywell, Inc. (an international corporation based in Minnesota) cosponsored the Twin Cities (Minnesota) Corporate Breakfast. The event included guests from large corporations located throughout the Minneapolis-St. Paul region.

In June of 1997, AmFAR hosted the "Friend for Life" benefit in Beverly Hills, California. The event honored "friend for life" Cristina Saralegui, who has been a journalist for 25 years and was one of the first people to speak out about the threat of AIDS to the Latino community. The event raised more than $500,000 for AIDS research, and featured appearances by a number of celebrities, including Gloria Estefan and Jimmy Smits.

AmFAR is known for its strong use of celebrity support and endorsements in its fund-raising efforts, but it does not restrict its activities to corporate and celebrity fund-raisers. AmFAR supporters have been able to participate in silent auctions by mail, and U.S. federal employees are able to contribute to AmFAR with automatic payroll deduction. Supporters sometimes take the initiative to create unique ways to donate to AmFAR, such as the flight attendants at American Airlines who started an aluminum recycling program and have donated a portion of the proceeds to AmFAR since 1993.

The funding that AmFAR raises has impacted the status of the HIV/AIDS epidemic in a variety of ways. Since 1985 AmFAR has invested more than $140 million in its programs—the majority of this money going as grants to more than 1,700 AIDS research teams. Many of these teams were pursuing research that, at the time, seemed too farfetched for funding from other foundations. AmFAR's support of these teams gave them credibility and allowed them to pursue additional funding from the government, private industry, or other foundations.

AmFAR is also active in educating the public about AIDS. AmFAR sponsors many conferences on AIDS and AIDS-related issues. For example, in September 1997 AmFAR cohosted the Conference on Global Strategies for the Prevention of HIV Transmission From Mothers to Infants. AmFAR also sponsors physician updates in major cities on topics such as "Rational Approaches to Antiretroviral Therapy in the Clinic."

Under the auspices of its public policy program, AmFAR uses strategies to influence public policy. To that aim, AmFAR representatives testify at congressional hearings, work with key policymakers, and build coalitions with members of the medical community on relevant issues. AmFAR also influences policy with its funding directions. The organization funded some of the first studies on AIDS ethics, leading to policy enactment that protects the confidentiality of people (and their medical records) with HIV/AIDS. AmFAR advocated for enactment of policies such as the HOPE Act of 1988 (the first federal law to combat AIDS), the Americans with Disabilities Act of 1990 (which provides certain rights for those with HIV/AIDS and other disabilities), and the Ryan White CARE Act of 1990 (which provides funding for AIDS treatment and prevention).

PROGRAMS

AmFAR designs programs to carry out the organization's mission of reducing the death, disease, and other misfortunes associated with AIDS. The Basic Biomedical Research Program is a major AmFAR research grant program. In contrast to the federal government, which favors established, multiyear projects for funding, AmFAR awards grants for new AIDS research. Often the recipients of AmFAR's awards are researchers new to the AIDS community and are only able to break into AIDS research with the backing of an AmFAR grant. For example, AmFAR-funded researchers have made significant contributions to the field of gene therapy. Gene therapy introduces specific genes into HIV-susceptible cells to make these cells HIV resistant. AmFAR also funds research that has potential to improve the quality of life for those with other diseases such as cancer, heart disease, and autoimmune disorders. For example, AIDS research has led to the use of 3TC—a treatment similar to the AIDS treatment AZT—for treating the hepatitis-B virus.

Another one of AmFAR's grant programs, the Clinical Research and Information Program, establishes and supports AIDS community research and treatment centers, thereby bringing clinical treatment and research into communities heavily impacted by AIDS. Under the Clinical Research Program, AmFAR places a special emphasis on attracting and awarding grants for research that educates and includes women and minorities in community-based clinical trials for HIV/AIDS. Women and minorities have historically been underrepresented in HIV/AIDS community-based trials. AmFAR encourages funding requests from community organizations that urge women and minorities to get involved in community trials and assist them in enrolling in trials.

AmFAR is active in advocating and shaping AIDS public policy through its Sheldon W. Andelson Public Policy Program, which is based in the organization's Washington, D.C., office. Under this program, the organization advocates for policy by influencing key legislators, testifying at congressional hearings, educating the public and the media, and building coalitions with important people in the medical community—some of whom serve on AmFAR's board of directors. Some of the issues that the organization has advocated for under the Public Policy Program include: support of human rights issues for those with HIV/AIDS, support for funding for the National Institute of Health (NIH) Office of AIDS Research, and support for needle-exchange programs for HIV-infected people.

BUDGET INFORMATION

In fiscal year 1996 AmFAR had total revenue of $17,847,303. This included: direct public support ($12,035,277), government contributions/grants ($1,815,000), interest on savings and investments ($30,714), a loss on sales of assets other than inventory (-$65,150), net income from special events ($3,994,360), and other revenue ($37,102). Expenses totaled $14,845,945 and included: program services ($10,916,597), management and general ($824,147), and fund-raising ($3,105,201). In a separate breakdown of expenses, some of the most notable included: grant and allocations paid out ($2,663,112), salaries and wages ($1,932,365), and printing and publications ($2,125,269). AmFAR assets during fiscal year 1996 totaled $10,632,073.

HISTORY

In the early 1980s, the medical community was just beginning to be aware of what would become known as AIDS. In 1981 Dr. Michael Gottlieb and others reported five cases of a new acquired immune deficiency syndrome in the United States. By 1983 a major outbreak of AIDS occurred in Africa and 2,807 cases were reported in the United States. In response, organizations across the country formed to fight the growing epidemic. One of those organizations was the AIDS Medical Foundation (AMF), which was founded by Dr. Mathilde Krim, a scientist with four doctorates including one in biology, who put up $100,000 of her own money. Krim in particular was active in AIDS research through related research that she had carried out with interferons—substances used to treat some viral diseases. Early on, AMF served as a research organization and established a scientific advisory committee.

In the meantime, the National AIDS Research Foundation of Los Angeles (NARF) was formed with a $250,000 donation from actor Rock Hudson, who had been diagnosed with AIDS. NARF and AMF joined forces in 1985 to become AmFAR—cochaired by doctors Krim and Gottlieb. Actress Elizabeth Taylor was appointed as national chairman.

AmFAR has not been without its ups and downs during its relatively short history. The first five years of AmFAR's existence were flush and successful, with Taylor lending the visibility that the organization needed and Krim contributing the scientific credibility and passion of her own for AIDS research. The U.S. public seemed to collectively realize that AIDS was a serious epidemic not to be taken lightly. In 1987 the Reagan administration—who had been closed-mouthed about the AIDS epidemic—broke from tradition when then President Ronald Reagan discussed AIDS for the first time at an AmFAR benefit.

Cochair Gottlieb parted from AmFAR in 1990 over a disagreement about the organization's community-based clinic trial program. The program created a national system of community clinics that provided free medical care and experimental drugs to HIV/AIDS patients. Gottlieb opposed the program, feeling that it would not be sufficiently professional or objective. Established in 1988, the program brought clinical treatment and research directly into 24 communities that were highly impacted by AIDS/HIV during its first 10 years. Government and industry would go on to adopt this method of research as well.

In 1991 AmFAR opened its Washington, D.C., office in order to maintain a presence in the nation's capital and to influence policy regarding AIDS research and AIDS advocacy. The organization reached a turning point in 1991, when Terry Beirn—who had facilitated the merger that created AmFAR and had served as AmFAR's program officer—died of AIDS. Among other accomplishments, Beirn had crafted the Ryan White CARE Act of 1990, a landmark bill which provided substantial federal funding to AIDS treatment centers across the country.

When Krim replaced Beirn with Bob Brown, a heterosexual, white man and a March of Dimes executive, several people on staff left and members of the gay community as well as National Chairman Taylor were infuriated at Krim's decision. Some perceived Brown as sexist and homophobic. Donations plummeted and even though Brown was fired two years after he started, AmFAR faced a significant budget shortfall by 1995. The organization was forced to trim its budget from $20 million to $16 million in order to keep up with grant commitments. During this time, AIDS organizations in general were having a harder time competing for dollars, because of the many AIDS organizations that had sprung into existence.

According to Krim in Frontier (June 14, 1996), it seemed that in the early 1990s the sense of public urgency about AIDS began to drop off. AIDS organizations struggled with convincing the public that the AIDS battle still needed to be fought. In addition, AmFAR was snubbed by some of the gay community, who associated the organization with mainstream, heterosexual appeal and celebrity representation and tactics. However, some of the country's foremost gay AIDS activists soon recognized AmFAR as a leader in AIDS research. With the passage of time, AmFAR could take credit for accomplishments such as: funding research in support of needle-exchange programs and funding research that led to the development of protease inhibitors, a treatment that holds much promise for those with HIV/AIDS.

In February 1997 Arthur Ammann, M.D. was named president of AmFAR. Ammann had served on AmFAR's Board of Directors between 1988 and 1994 and was a respected scientist in the field of pediatric immunology. His contributions to the field of AIDS research included being the first to describe cases of HIV transmission from mother to infant and being the first to describe cases of HIV transmission through blood transfusion. With the appointment of influential members of the medical community to its board and staff, AmFAR continued in the 1990s to aggressively pursue the funding of AIDS research and to advocate for research and civil rights-related AIDS issues.

CURRENT POLITICAL ISSUES

In its ongoing effort to fund and promote AIDS research and policy, AmFAR is involved in a number of AIDS related issues. One of these concerns is the FDA approval of drugs for AIDS/HIV. In August 1997, the Clinton administration endorsed the testing of AIDS treatments for children, a move which AmFAR supported. In the past, drugs had been more easily approved for adults than children, since there was little data about the side effects that children might suffer from these drugs. AmFAR lobbied for this reform and continues to push the FDA to move quickly to test and approve the many new drugs proposed for AIDS treatment.

According to AmFAR, needle-exchange programs have been proven to decrease AIDS infection among intravenous drug users, without increasing drug addiction. In late 1997 and early 1998, AmFAR and other AIDS advocate groups pushed hard for federal funding for such programs.

Case Study: Needle-Exchange Programs

According to an article in The Columbian, 50 percent of those with HIV get the virus through unsanitary needles used for intravenous drugs, or are the children of infected addicts. AIDS organizations have long advocated for needle-exchange programs that allow drug users to exchange unsanitary needles for clean needles, at no cost to the drug user. In one case, needle users came from a 60-mile distance to take part in such a program south of Seattle. In 1998, 110 of these programs operated, without federal support, in approximately half of the United States.

Organizations such as AmFAR have advocated for federal funding for such programs. When in 1997, President Bill Clinton ordered Health and Human Services Secretary Donna Shalala to study the issue and make a recommendation by early 1998, AmFAR lobbied hard for an outcome that would provide the funding. AmFAR, through its Washington office, followed the legislation and met with key policymakers to attempt to influence the decision. AmFAR also launched a massive media campaign in newspapers, aimed at getting an understanding of the issue out to the public.

But in April 1998, Shalala—even while admitting all the benefits of needle-exchange programs—refused to recommend that the federal government fund such programs. The decision angered AIDS advocate groups that claimed it was the first time they had seen the government endorse, but refuse to support, a position.

Public Impact

According to AIDS groups, the cost of needle-exchange programs is actually much less per person than AIDS treatment for people who become infected. While treatment for one person with AIDS from initial diagnosis until death costs about $65,000, a needle-exchange program that serves 250 people would cost $50,000 annually. Needle-exchange advocates also point to studies that show a decrease in drug use among participants in some needle-exchange programs. Several federally funded studies showed that drug use did not increase for users of needle-exchange programs. While supporters of the programs argue that drug use is not likely to go away completely, opponents feel that the programs send the wrong message to society and that they are akin to providing drug addicts with unlimited, free drugs.

BIOGRAPHY: Ryan White

Activist (1971–1990) Thirteen-year-old Ryan White was diagnosed with AIDS in 1984. One unique aspect of his case was that he did not contract AIDS through sexual activity or intravenous drug use; he contracted AIDS when tainted blood was used in a routine transfusion to treat his hemophilia. The teenager's diagnosis came shortly after the disease was first identified, a time when the media was sounding hysterical alarms about the threat of this epidemic. Public ignorance and misunderstanding about how AIDS was transmitted and treated resulted in widespread fear, confusion, and discrimination. White's community in Indiana was so fearful, he was refused the right to attend public school forcing his family to fight a highly publicized court battle to regain his rights. The unsuspecting teenager's bid to be 'normal' made him an overnight spokesman for AIDS. While he endured homophobic jokes, piles of garbage on his front lawn, hate letters, and a bullet fired through his family's living room window, White inspired others to join his cause against fear and prejudice. Appearing on television and radio programs and speaking to audiences in person, White shared with as many people as possible what he knew about AIDS and what he experienced as an AIDS patient. The 1988 film, The Ryan White Story, further broadcast his struggle to a mass audience. White died of AIDS complications two years later at the age of eighteen. His celebrity helped foster a public awareness that gave rise to the American Foundation for AIDS Research (AmFAR). In his eulogy, Reverend Raymond Probasco summed up the impact White's courage and determination had, "It was Ryan who first humanized the disease called AIDS."

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FUTURE DIRECTIONS

Looking to the future, AmFAR is supporting new research that studies the integrase viral enzyme. Successful research findings could lead to integrase inhibitors that could suppress the AIDS virus. More crucial, however, is finding a vaccine for AIDS. According to Krim, "that is the real solution for humanity because people in the Third World will not be able to afford the drugs." Recent research has yielded a possible step toward developing a vaccine that deals with naked DNA fragments. AmFAR has awarded a grant to Dr. Johnston of Southwest Medical Center in Dallas, Texas, who came up with the idea. The process involves extracting DNA from a virus or bacterium, breaking it into pieces, and injecting it into an organism. The injected DNA fragments act as an internal vaccination and produce antibodies against the bacterium.

GROUP RESOURCES

AmFAR maintains a Web site at http://www.amfar. org that covers the organization's programs, current solicitations for funding proposals, publications from previous studies, upcoming fund-raisers and conferences, and current news releases. Persons who are HIV positive may obtain the AmFAR Treatment Directory for free by calling the National AIDS Clearinghouse at 1-800-458-5231.

GROUP PUBLICATIONS

AmFAR has many publications available for the public. For example, AmFAR publishes the AIDS/HIV Treatment Directory twice yearly. The directory is a comprehensive listing of approved and experimental treatments for HIV and related disorders, and is available to individuals for $55, and organizations for $125. Other publications include: The AmFAR Newsletter, Facts about AIDS, and HIV/AIDS Educator. For more information, visit AmFAR's Web page at http://www.amfar.org, or contact AmFAR by mail at 120 Wall St., Thirteenth Flr., New York, NY 10005; by telephone at (212) 806-1600; or by fax at (212) 806-1601.