The Enduring Legacy of AIDS Walks

In the '80s, AIDS hit the LGBT community like the proverbial ton of bricks. From the very beginning of the epidemic, locals AIDS Walks served to help then-fledgling AIDS support organizations. From the first walk organized by Craig Miller in Los Angeles in 1985 to today's many such walkathons, they have continued to survive and thrive as vital fundraisers while other such events have fallen by the wayside.

"As the AIDS epidemic began taking a big toll on our community, it became clear to me and others that we were going to need to step in, band together and take to the streets to raise funds for this new epidemic that the government was unwilling to commit itself to," Miller recalled in a recent interview. "I knew a little about politics and how to organize, I knew our people were being ignored, and I knew I was not about to see us go down without a fight."

Miller brought his idea to utilize grassroots activism to raise awareness and funds to AIDS Project Los Angeles, which ended up raising $673,000 in their first walk in June 1985. The following spring, Miller took his enthusiasm, sense of mission and expertise across the country to New York City, where he helped Gay Men's Health Crisis organize its first walk, now the world's largest.

45,000 in New York to Raise $6 Million

Back then, the stigma surrounding HIV not only drove away the misinformed mainstream, but also some gay men that were wary of being publicly supportive of a pariah illness. "To this day, I remain grateful to and inspired by those 6,000 New Yorkers who had the courage and vision to join us and GMHC at the first AIDS Walk in New York," Miller said.

GMHC hopes to see 45,000 participants at this year's 28th AIDS Walk New York on May 19, and to raise $6 million for GMHC and more than 40 other local AIDS service organizations for whom this is their largest single annual fundraiser. The money is all the more necessary this year, noted GMHC's executive director, Dr. Marjorie Hill, because of a 9 percent cut in federal and city grants, "but," she added, "I don't have 9 percent less clients, In fact, I have more people who need services -- and the Centers for Disease Control and Prevention is talking about cutting $400,000 from testing funds." This money also fills in other gaps from government funding, such as subway passes and snacks for support group members, HIV testing kits, program supplies and even some clients' rent.

Especially important are corporate sponsors like MAC Cosmetics, Macy's and Bloomingdale's, who each encourage enthusiastic employees to walk each year as well as supply large donations. "Just the other day I met a brand new corporate team leader who alone raised $20,000. It was phenomenal!" GMHC also partners with local drugstore chain Duane Reade that sells paper red ribbons with an offer to add a dollar at purchase that last year totaled $340,000. Hill hopes they better that number this year. "There are eight million people in New York so why stop there?" she asked. "For people who can't fundraise or write a check, they can add a dollar to their Duane Reade purchase. That could make the difference."

Reaction to Government’s Inaction

Miller has helped organize another AIDS Walk in San Francisco. The first walk in 1987 drew 6,000 Bay Area residents and raised $667,000. Twenty-five years later, AIDS Walk San Francisco has raised a whopping $77 million for local AIDS service organizations.

Also in 1987, volunteers from Philadelphia's gay and lesbian community founded their own AIDS Walk, which raised $33,000. In last year's event 12,000 people raised $375,000 for various local service organizations. AIDS Walk Philly, produced by the AIDS Fund, now includes a 5K run, an AIDS Memorial Quilt display, and booths by local organizations.

In all of these cities, the walks came about as a grassroots reaction to government inaction. "The walk was really founded at a time when there was not a lot of government funding for HIV/AIDS services, and a few organizations in Philly were just trying to provide services for their friends who were dying," said Executive Director Robb Reichard, who began as a volunteer for nine years before formally joining the organization.

As with other AIDS Walks, the event has become popular with school groups and non-gay organizations. "One of the things we have strived for from day one is to make this a community-wide event, and reach out to young people," said Reichard. "High school and college teams participate every year, and we are constantly getting new people involved."

AIDS Walk Philly is set up a bit differently from other walks in that partner organizations keep 100 percent of the funds they raise, rather than just a percentage. Because the AIDS Fund doesn't provide any direct services, they rely on 30 partner organizations to do so, while their mission is to raise awareness about HIV and its consequences. In Philadelphia, the HIV infection rate is five times the national average, and new studies show that many of these new diagnoses are for AIDS rather than HIV. Despite such daunting statistics, Reichard manages to keeps the faith. "I think we have to be constantly willing to evolve as the epidemic changes, to continue to be relevant for a broad community," he said. "Partnering with other organizations is the key to continuation."

Chicago & Ft. Lauderdale a Study in Contrasts

Although events Miller co- founded have grown, he noted that many AIDS Walks "have gone out of existence, and several more still exist but are only achieving a fraction of the potential that they hold." Chicago is a textbook case of a walk that has not met expectations. While Chicago's rates of new infections have risen, the Second City's AIDS Walk has not kept pace meeting the rising need for services. AIDS Walk Chicago began in 1985, but, by the standards of other cities, its AIDS Walk remains small, with only about 5,000 walkers raising $235,000 for 35 partner organizations, and $170,000 for AIDS Foundation of Chicago, the sponsor and principal beneficiary.

Rhett Lindsay, AFC's fundraising events director, said that part of the problem is that AFC has to assume all of the costs and responsibilities for the event, although the proceeds are divided among up to 35 organizations that are permitted to keep 90 percent of all funds raised. "These funds go toward anything and everything, from AFC's general operating expenses to advocacy efforts, fighting for ADAP funds, working with incarcerated communities and the female condom campaign," said Lindsay. "We are really underwriting these things, to keep the lights on and keep things moving."

In Fort Lauderdale, on the other hand, the Florida AIDS Walk & Music is only eight years old; but with an added music festival, it is experiencing rapid gains. This year's event on March 25 brought 2,500 to the city's South Beach Park to walk a circle back to where a DJ spun into a stage show. Legendary soul chanteuse Chaka Khan, who reportedly changed plans to celebrate her 60th birthday, proved to be a big draw. Mark Martin, regional director of community development for the AIDS Healthcare Foundation and event director for the Florida AIDS Walk, said that since its inception, the walk has raised more than $3 million for local ASOs and the AIDS Healthcare Foundation, the sponsoring organization.

Unlike other AIDS Walks, where partner organizations raise funds and give a portion to the host organization, at the Fort Lauderdale walk, seven local beneficiary organizations maintain all the funds they raise -- and get a bonus check to boot. "Every year, we partner with local beneficiary organizations that are primarily South Florida-based and provide HIV/AIDS-related support programs for Floridians," Martin said. "They use our marketing tools and keep every penny of the funds they raise; and we give them a financial gift on top of that." That way, all the proceeds directly help people living with HIV, with the remainder helping fund HIV testing, medication, healthcare provisions and the most at-risk client care.

Miller cited 2010, when Florida dithered about whether the state or the federal government was responsible for AIDS Drug Assistance Programs. The Fort Lauderdale event raised $1 million to help those whose income level disqualified them for ADAP support and were unable to pay for meds.

Two (Non-Competing) Walks in Dallas

Dallas is unique in that it hosts two AIDS Walks. In 23 years, LifeWalk has raised money for Oaklawn Community Services, AIDS Arms and other local organizations. On October 6, the organizers plan on 4,000 walkers raising over $450,000. LifeWalk's development director, Tori Hobbs, noted that the proceeds from such fund-raisers aren't restricted by federal guidelines -- some are too narrow, arbitrary or downright misguided, according to AIDS activists.

"As we all know, federal grants have a tremendous number of guideline and parameters you must stay within," Hobbs said. "If someone doesn't fall into a particular funding source, we're going to get them into medical care right away. LifeWalk funds fill the gap there."

LifeWalk has proven to be such a success that a second walk has been founded to raise funds for minority communities affected by HIV. Across town on March 16, AIDS Walk South Dallas held a 2.1-mile walk/run for the Kidscape Foundation, directed to children affected by HIV. "LifeWalk, happens every year in the gay and lesbian part of town, but AIDS Walk South Dallas is all about the community." said founder and chair Auntjuan Wiley. "The walk is in a more predominately Black neighborhood to help people of color."

The walk was a result of community input back in 2009. At first, South Dallas residents only thought of it as a benefit, but later appreciated its bringing awareness about HIV to the Black community. This year marks the fourth AIDS Walk South Dallas. It broke even its first year and raised $25,000 in 2011 with 300 walkers. The goal this year is $40,000. "People are responding to it, shown by an increase in attendance and people not only hearing the message, but really listening to it," said Wiley.

Why People Take to AIDS Walks

There are certainly easier ways to help a cause than hassling friends, co-workers and everyone in the social media universe for money, then getting up on a weekend morning to walk a few miles with several thousand others. So why have AIDS Walks become so popular?

"First and foremost, AIDS Walks have a physical component. People are physically present and experiencing the moment," said Martin. "This has a greater impact on people. The grassroots fundraising, the walking are the fuel that keeps these events burning brighter year after year."

In addition, people know their donations pay for much-needed services that stay in their community. As Wiley noted, "People know every step they take is benefiting someone with HIV."

For Hobbs, what makes AIDS Walks special is the team spirit and the opportunity to make a personal statement. "Many teams have been doing this for literally 20 years, returning year after year," she said. "People have an opportunity to make a very visible statement for a loved one they've lost, and want to keep this awareness in the general community. You can't replicate that at a gala."

"Seeing the thousands of people and knowing that you're all there for the same reason is the beauty of AIDS Walk," added Reichard. "HIV can be a very isolating disease. Every year when the TV cameras pan in on the walkers, there's someone at home who sees these people trying to make a difference, and that person knows they're supported."

The Enduring Legacy of AIDS Walks

Recent hopeful reports, such as the baby born with HIV who is apparently virus free, unfortunately point to an end in sight to this pandemic. "It's wonderful to have a second cure in 30 years, but two cases out of 33 million people means we still have a lot of work to do," said Hill. "It took us 70 years to develop a polio vaccine. HIV is a very complex, smart and resilient virus, not something we're going to be able to figure out overnight. As long as there is a need for services, education, food, transportation, medicine, legal help and connections to care, we will be doing the AIDS Walk."

The high profile of such events helps raise awareness of the importance of HIV prevention, Hobbs added. "As we've had more and more lifesaving regimens, generally if you are on an HIV regimen today, you hope to live a normal life," she said. "But an HIV diagnosis still changes someone's life, and people don't want that to be forgotten. They want people to remain aware and take precautions to not contract HIV."

Lindsay pointed to an 85-year-old participant last year that had lost her son to AIDS 20 years previously. She brought nearly 50 family members with her. His organization worked with the Names Project to bring her son's piece of the AIDS Memorial Quilt to Chicago's Soldiers Field, where it was put on display. Cities like Chicago could benefit further by such personal stories, but also by avoiding what Miller called "the folly of extremes" in either paying too much to produce the event or cutting corners to the point where it flies under the public's radar.

"The reason that AIDS Walk events have continued to do well is because we organize them in a way that captures the imagination of the participants and lifts up the spirit of the community," Miller said. "Even though the epidemic -- and some of these events -- are nearly 30 years old, we are not living in the past or resting on our laurels. We continue to challenge ourselves and our participants to find a way to bring this epidemic to an end. Working increasingly hard to engage young people, we will break the back of this epidemic, and give rise for the first time in decades to an AIDS-free generation."