The Washington Blade - January 5, 2001
Will O'Bryan

The top seven groups in a survey conducted by the Blade late in 2000 have a combined estimated income of $51.4 million - a 29.5 percent increase from 1998 for the same seven groups. Comparing the top seven today with the top seven groups of 1998 (a slightly altered line-up), found that 2000 estimates still represented an increase of 24.8 percent.

In 1991, the Blade published its first survey of national AIDS organizations, looking at the six largest groups at the time. They included the American Foundation for AIDS Research, the AIDS Coalition To Unleash Power, the AIDS Action Council, the National Association of People With AIDS, the National Minority AIDS Council and the National Leadership Coalition.

Nearly a decade later, AmFAR is still the leader of the pack, ACT UP possibly unleashes more nostalgia than power, and President Clinton's post-Bush White House has declared AIDS a threat to international security.

According to the U.S. Centers for Disease Control and Prevention (CDC), between 800,000 and 900,000 U.S. residents are living with HIV infection today, with about 40,000 new infections each year. The CDC estimates that men account for 70 percent of the new U.S. infections. Among men with HIV/AIDS, 60 percent of infections are the result of having sex with other men. The CDC also estimates that about 50 percent of new male infections are among black men, 30 percent among white men, and 20 percent among Hispanic men.

Among women, who account for 30 percent of new infections, the CDC estimates that 64 percent are black, 18 percent white, and 18 percent Hispanic.

"The numbers tell the story for themselves," explained Phill Wilson, executive director of the fledgling African American AIDS Policy and Training Institute, and founder of the National Black Lesbian & Gay Leadership Forum. "The way the response [to AIDS] has been staged, in many ways Gay African American men have been invisible. At the same time, we're rarely reflected in the black community.

... The invisibility of black Gay men not only puts us at risk, but also puts black women at risk."

The founding of Wilson's institute in 1999 marks one of the recent changes in the landscape of national AIDS organizations, as does the demise of the Ryan White Foundation in the same year. The last Blade survey of national AIDS groups, conducted in 1998, reported that AIDS groups were struggling to increase funding in the face of a public perception that the emergency was over.

"We've been running on a plateau and we need that umph again," Jeanne White-Ginder, president and founder of the foundation named for her son, who died of AIDS-related complications in 1990, told the Blade last year. She was explaining that, while the foundation still had funds, she would be obligated to spend all of her time raising money in order to keep going. But AIDS Action, another national organization, stepped in and created the Ryan White Project, providing White-Ginder with resources to allow her to continue to educate about AIDS-related issues, rather than spend her time asking for money.

"We're not reading and hearing about AIDS so much anymore," White-Ginder added, referring to the difficulties her foundation faced in raising funds. "People seem to have gotten tired of it."

The dissolution of the Ryan White Foundation and its reincarnation as the Ryan White Project under the auspices of AIDS Action is part of a trend observed by Paul Di Donato, executive director of Funders Concerned About AIDS, a group that assists philanthropists but makes no grants itself. Di Donato describes the situation for the national organizations as something akin to the corporate streamlining of the past decade.

"I think there is still a little bit of a shakeout with AIDS/HIV organizations in this country," Di Donato said, pointing to a relatively large number of AIDS/HIV organizations. "There is pressure to see if they need to exist. There is movement to merge. The shakeout is still going on."

Thomas Metzger, director of communications at the National AIDS Fund, one of the nation's largest AIDS organizations, detailed how that "shakeout" is affecting his group.

"We have totally reinvented ourselves," said Metzger. "We have dramatically reduced overhead, brought on new technology. ... We have about half as many staff members as we had two years ago, but we're not doing less. We're actually doing more work. ... The last couple of years have been all about efficiency. We need to be able to go to our donors and say we aren't wasting one cent of their money." Metzger said the decrease in funding at NAF that has motivated his organization to become a more efficient entity is not so much the fault of a complacent public, but rather an inevitable evolution.

"The public, for whatever reason, may not understand the urgency of the AIDS crisis, but that's our responsibility," Metzger insisted. "The challenge of AIDS fundraising has evolved. In the '80s and early '90s we were looking at an area of intense, intense urgency. The epidemic in the early years was just so hideous; people's hearts were breaking and money was pouring in. The syndrome's - AIDS's - impact on individuals was so grotesque, so obvious, and that has changed. Medical advances have brought us the point where AIDS is more a manageable illness. Unless there's an amazing technological advancement, we're looking at an epidemic that may be with us for decades. It's very difficult to maintain that fevered urgency. ... When a car alarm goes off, no one listens anymore. The same cry for help isn't very effective anymore." Metzger said his group has also been able to employ technology that did not exist when the group began in the 1980s in order to further stretch the money they raise to fight AIDS.

"We just incorporated a brand-new database," Metzger explained. "We now have a single database that processes organization-wide. Applications and reporting are online. That completely removes data entry." Aside from minimizing costs, Metzger added that the new technology will allow its "community partners," the local groups that receive money from the National AIDS Fund, to access a mountain of information through the group's new online search engine.

Metzger offered as a hypothetical example a Miami AIDS organization trying to write a grant proposal for a program to address the needs of Hispanic women affected by HIV/AIDS. In the past, said Metzger, someone from Miami might phone the fund in D.C. asking if anyone had any experience in writing such a grant proposal. The answer might be yes, said Metzger, but copies of similar grant proposals would likely exist only as hard copies sitting in boxes, requiring costly labor to retrieve. The new database, said Metzger, will allow the hypothetical Miami community partner to visit the fund's Web site and enter key words to instantly access everything the fund knows about writing grant proposals about Hispanic women affected by HIV/AIDS.

As the nation's AIDS organizations continue to evolve, as some disappear and new ones take root, Di Donato stressed one point: "It's not the most efficient model in the world, but it's more efficient than lots of people give it credit for.

Some folks get a little carried away with the criticism. The vast, vast majority of people doing HIV/AIDS work are really just trying to do a good job."

AIDS groups overview

The Blade mailed its 2000 national AIDS organization survey to the following groups, except the African American AIDS Policy and Training Institute, which was contacted via phone after the early October mailing. Groups responded in varying degrees, while one group, Project Inform, did not provide information, saying the organization is "in flux." Design Industries Foundation Fighting AIDS Inc. did not return the survey or respond to phone messages. The Blade has filed requests under the Freedom of Information Act to obtain copies of both groups' 1999 tax returns. The Blade attempted to contact all groups who did not complete the survey in order to answer all the survey questions. A separate listing of smaller groups that responded to the Blade survey but were not profiled follows the initial listing.

merican Foundation for AIDS Research (amFAR)

erome J. Radwin, CEO

000 estimated income: $20 million

998 estimated income: $15.8 million

ounded: 1985

ype of work: AIDS research, prevention and treatment education rograms; advocates for public policy. Publishes the HIV/AIDS reatment Directory

taff size: 70, combination full-time and part-time

eb site: www.amfar.org Broadway Cares/Equity Fights AIDS Inc.

om Viola, executive director

000 estimated income: $11 million

998 estimated income: $7.4 million

ounded: 1992

ype of work: Awards grants twice a year to AIDS service rganizations nationwide and supports The Actors' Fund social ervice agency

taff size: 36 full time, 4 part time

eb site: www.bcefa.org

ost important accomplishments in the last two years: "Frankly, he most important activity in any year is that we've been able o keep the theater community engaged. Their creativity is what elped us raise more than $10 million last year."

op priority for 2001: "Continue that fundraising base. It's nique to us. That allows us to continue the grant making that e do."

ational Minority AIDS Council

aul Akio Kawata, executive director

000 estimated income: $8.6 million (submitted as the group's 001 budget)

998 estimated income: $3.9 million

ounded: 1987

ype of work: Develops leadership within communities of color to ddress the challenge of HIV/AIDS

taff size: 56

eb site: www.nmac.org

ational AIDS Fund

ary Wilson Byrom, president and CEO

000 estimated income: $4.5 million

998 estimated income: $6.2 million

ounded: 1988

ype of work: Raises funds at the national level to fund IV/AIDS-related community groups

taff size: 14

ost important accomplishments in the last two years: Reduction f overhead costs and introduction of new technology. Expansion nto Memphis and Houston regions.

op priority for 2001: "Funnel as much money as possible into ur community partners."

ost common request: "Other than money, the organizations that e work with, the thing they want most is technical assistance."

ost common complaint: "There is frustration that we're not in ther states. We get a lot of calls and e-mails from other ountries. We do not make grants outside of our community artner areas, but we try to do our best to refer those requests o appropriate bodies."

he Names Project AIDS Memorial Quilt

ndy Ilves, executive director

000 estimated income: $2.6 million

998 estimated income: $2.6 million

ounded: 1987

ype of work: HIV/AIDS education and community awareness

taff size: 20 full-time, 4 part-time

eb site: www.aidsquilt.org

ost important accomplishments in the last two years: Successful aunch of prevention-focused Quilt tour of historically black olleges and universities and the U.S. tour of the South African IDS Memorial Quilt.

op priority for 2001: Launching the next phase of the Web-based uilt Archive Project and continuing quilt-based HIV-prevention ducation program in schools across the United States.

ost common complaint: The project cannot respond as quickly as t has in the past to requests for information.

ational Association of People with AIDS

erje Anderson, executive director

000 estimated income: $2.5 million

998 estimated income: $1.8 million

ounded: 1983

ype of work: Advocates on behalf of people living with HIV/AIDS

taff size: 16 full-time

eb site: www.napwa.org

ost important accomplishments in the last two years: Expansion f several education and community development and training rograms and grassroots initiatives.

op priority for 2001: Continuing to expand NAPWA programs to eet the needs of people infected and impacted by HIV/AIDS. Also o strengthen and enhance means of communicating with NAPWA's onstituency.

ost common request: Information on treatment-related ublications

ost common complaint: NAPWA needs to be more visible in the ommunity; many people living with AIDS are not familiar with he association.

IDS Action

laudia French, acting executive director

000 estimated income: $2.15 million

998 estimated income: $2 million

ounded: 1984

ype of work: Lobbies the federal government and Congress on ehalf of 3,200 AIDS service organizations. Promotes public wareness of HIV/AIDS-related issues.

taff size: 18 full-time

eb site: www.aidsaction.org

ost important accomplishments in the last two years: Led the obbying, media, and policy development around the eauthorization of the Ryan White CARE Act in 2000. Released a ational testing campaign that is being aired on the Oxygen etwork and MTV.

op priority for 2001: Secure funding increases for HIV revention, care, research, substance abuse prevention and reatment, housing, as well as an AIDS initiative in communities f color and the global AIDS initiative. Will continue to fight or Medicaid expansion and other initiatives to ensure that IDS-preventing drugs and medical services reach the most ulnerable Americans with HIV before the onset of full-blown IDS, not after.

ost common request: Legislative and policy information updates

ost common complaint: AIDS Action receives complaints about ssues and policies before Congress that the ndividual/organization does not agree with and therefore wants IDS Action to take action on.

frican American AIDS Policy and Training Institute

hill Wilson, executive director

000 estimated income: $1 million

998 estimated income: N/A

ounded: 1999

ype of work: Provide community-based training and policy upport to African Americans committed to ending the AIDS rises.

taff size: 7 (Three positions currently vacant)

eb site: www.blackaids.org

ost important accomplishments: Establishment of the African merican HIV University; publication of the only national black IV newsletter, which comes out monthly and has a distribution ist of 24,000.

op priority for 2001: "Our top priority is to engage more raditional African American Institutions in the fight to stop IDS in black communities."

ost common request: "The first thing is people want training. he second is the media wanting credible black sources. articularly the black media is looking for sources who can help hem."

ost common complaint: "We hear about the lack of resources, oncern about the perception that the AIDS epidemic is over ecause it's not affecting white Gay men as it used to."

roject Inform

oseph Garrett, president, board of directors

000 estimated income: (would not supply information)

998 estimated income: $2.2 million

ounded: 1985

ype of work: Provides information on the diagnosis and reatment of HIV disease to HIV-infected individuals, their aregivers, and their healthcare and service providers.

taff size: 21

eb site: www.projinf.org

esign Industries Foundation Fighting AIDS Inc.

avid Sheppard, executive director

000 estimated income: (did not respond to Blade survey or alls)

998 estimated income: $3 million

ounded: 1984

ype of work: Raises funds to grant directly to local HIV/AIDS rganizations

taff size: 16 full-time

eb site: www.aidsfund.org

ther national AIDS groups: Treatment Action Group: ww.aidsinfonyc.org/tag

ational Association for Victims of Transfusion Acquired AIDS: ww.navta.org

ational Catholic AIDS Network: www.ncan.org

others' Voices: www.mvoices.org

itle II Community AIDS National Network Inc.: www.t2cann.org

ssociation of Nurses in AIDS Care: www.anacnet.org

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