By Patricia Calhoun
By William Breathes
By Michael Roberts
By Melanie Asmar
By Michael Roberts
By Michael Roberts
By William Breathes
By Michael Roberts
Tony Garcia could see the shame and anger on the faces of the men who came to the Colorado AIDS Project to ask for help. They were men who spoke little or no English, men who hadn't yet told their families they'd been infected with HIV or whose families lived across the border -- men who had no place else to go.
For the mostly Mexican immigrants Garcia encountered as a case manager for CAP, HIV was an especially hard disease to deal with. Sex isn't talked about where they come from, much less homosexuality. And HIV, well, that's just taboo.
But Garcia says the pain these men had to endure didn't end at CAP's door. Some of the people working at the nonprofit's front desk would laugh at them because their pleas for help came out wrong or in broken English. Many had to fight for the services CAP offers, such as assistance in finding medical treatment or paying utility bills.
Garcia says these men complained of such humiliation to him four or five times a week during the more than two years he worked at the organization, which will handle about 1,550 clients this year. It made him sick -- so sick that he left CAP in 1999. "When I saw these clients, I had to spend a lot of time just making them feel comfortable. They would say they didn't know why they even came to CAP," says Garcia, himself an immigrant from Spain. "A lot of clients left. They didn't want to come back to CAP after the way they were treated.
"I always had to fight to get financial assistance for my clients; if someone needed $400 for rent, CAP would approve only $200. It was different for the white clients. And I always had to fight to get paperwork in both languages," Garcia continues, adding that CAP eliminated an HIV-prevention program aimed at gay Latino men in 1999. He also saw the clients who came in unshowered or unkempt. "That made a difference in how they were treated," he says. "Some of these people had no stable home, so they couldn't look presentable, but they were treated with no compassion."
Garcia and other former employees say CAP isn't doing enough to welcome Latino or black clients -- or, for that matter, anyone who doesn't fit the gay white male demographic that the organization has historically served. Because of this, Garcia left to take a position at People With AIDS Coalition Colorado, another advocacy nonprofit. He now works as a consultant for a national minority AIDS organization. "CAP is a white-gay organization," he says. "If they only want to work with gay white men, they need to say that."
But that's not what CAP is saying. On everything from its annual report to its Web site, Colorado's oldest and largest AIDS service organization pledges to meet the needs of the "changing face of AIDS." More and more Latinos and blacks are now learning they have AIDS, and many of CAP's clients these days are poor, homeless, addicted to drugs or alcohol or mentally ill. While CAP promises to address those needs, it faces a dwindling pot of money with which to do so -- a situation that has some observers wondering whether the organization is taking on too much.
And although people like Garcia feel that CAP hasn't done enough to accommodate an increasingly diverse clientele, there are some gay white men who feel abandoned because the agency that was created mostly by and for them is now reaching out to other people.
In addition, as CAP has responded to recent changes surrounding the disease, it has undergone an organizational restructuring and lost numerous employees, including its visionary leader of seventeen years. The organization is now on its third executive director this year.
The turmoil has had a devastating impact on finances. Donations to the eighteen-year-old nonprofit have dropped by 25 percent since 1997, according to its financial records. Thanks to government support, CAP's annual budget has remained steady over the past few years, at around $3 million, but because of waning donations and increasing client needs, services and programs have been eliminated to keep costs down.
New director Deirdre Maloney has a lot of work ahead of her if CAP really wants to serve all of the populations it says it does. And now, as it approaches its third decade, the nonprofit finds itself in the position of having to acknowledge its mistakes, correct misperceptions and rebuild confidence in an organization with a long and sometimes chaotic history.
AIDS turned twenty this year. To understand CAP's growing pains and financial troubles, it's important to understand how the disease has changed over the past two decades.
The Centers for Disease Control and Prevention (CDC) issued its first warning about a rare form of pneumonia occurring in a small group of gay men in Los Angeles on June 5, 1981; that illness, which was then called "gay-related immune deficiency" (GRID) was later discovered to be a result of acquired immune deficiency syndrome (AIDS).
At the time, Carol Lease headed Denver's Gay and Lesbian Community Center, which published a paper for its members, and she noticed stories coming across the wire about GRID. The community center, which operated a venereal-disease clinic, had gay male clients who were showing the same symptoms of this mysterious new disease. The first person in Colorado to be officially diagnosed with GRID, however, in May 1982, was not a gay man, but a hemophiliac. That case and others like it forced the CDC to recognize that this was not just a "gay disease." So in July 1982, the agency renamed it AIDS.
Nevertheless, people didn't understand that AIDS could only be spread through the exchange of sexual bodily fluids and blood, and many feared they could get sick by shaking someone's hand, by being sneezed on or by sitting on a public toilet seat. "Longtime partners of AIDS patients weren't allowed in emergency rooms, and the city wanted to shut down all the gay bathhouses," Lease recalls. "It was that kind of fear that CAP started in."
In response to the disease, which was quickly becoming an epidemic -- the CDC reported 251 cases in the United States in February 1982, and 471 cases just five months later -- Lease and Patrick Gourley, a volunteer at the Gay and Lesbian Community Center, created the Colorado AIDS Project ("Nobody Gets Out of Here Alive," March 2, 2000). Its purpose was to educate people about safe sex, to raise money to help those who'd been infected and could no longer work or pay their bills, and to offer support and friendship to dying victims of the disease in their final months.
In 1983, Lease hired Julian Rush, a former United Methodist minister, to head the project, and in 1984, CAP became its own, independent nonprofit. Rush led CAP for the next seventeen years; Lease moved on to become the executive director of the Empowerment Program, a nonprofit organization that helps low-income women secure housing and jobs. (The program later expanded to include a Women's AIDS Project.)
In the beginning, CAP and similar organizations across the country catered to a mostly gay white male clientele. In 1986, 84 percent of Coloradans with HIV were "men who have sex with men," according to the Colorado Department of Public Health and Environment. Of that group, 84 percent were white. (The CDPHE and other public health departments use the term "men who have sex with men" because not all of those men consider themselves gay.)
The image people had of AIDS in the early days was of an emaciated man with sunken cheeks. Although people can live with HIV (human immunodeficiency virus) for years before developing AIDS, in the 1980s, the disease killed quickly once it progressed to AIDS.
But treatment of the disease took a dramatic turn in 1995, when the United States Food and Drug Administration approved new drugs called protease inhibitors, which vastly slow down the spread of HIV in the body. When the drugs became available the next year, AIDS-related deaths began to drop. In Colorado, the number of AIDS-related deaths declined by 46 percent between 1996 and 1997, according to the CDPHE; across the country, the number dropped from more than 50,000 in 1995 to approximately 16,000 in 1999.
Furthermore, massive education campaigns appeared to be having an effect, as the number of new HIV infections annually decreased from more than 150,000 in the early 1980s to 40,000 in 2000.
Peter Brown, who first became involved with CAP as a client and is now the organization's residential-services manager, is an example of someone whose life has been prolonged and improved because of the new drugs. When Brown was diagnosed with full-blown AIDS in 1993, his doctor told him he had six months to live. He had only six T cells at that time (a healthy person has anywhere from 900 to 1,300 T cells). But because of the drugs that already existed, Brown was able to live long enough to see -- and benefit from -- the development of protease inhibitors. His T-cell count is now up to 570, but his drug regimen is far from simple.
"I take fourteen pills a day. There are people who take three times that amount," he says. "To keep on top of that is an organizational nightmare. In order for the medications to be absorbed into the system properly, you have to watch your diet and limit your fatty intake. Some pills need to be taken two hours before a meal, and some have to be taken two hours after a meal. And the virus can mutate if you don't take the medications consistently."
As people with HIV began to lead longer and healthier lives, many in the public confused the virus-stemming drugs with a cure. Magic Johnson's situation exemplifies this confusion: On November 7, 1991, Johnson announced that he had HIV; ten years later, he still appears to be the same picture of health that he was when he played for the Los Angeles Lakers.
The result in some cases was that the number of newly infected gay men began to rise again. In Colorado, for example, the number of HIV and AIDS diagnoses increased by 6 percent between 1999 and 2000, reports the CDPHE. (There are now between 650,000 and 900,000 people living with the disease in the United States and roughly 13,000 people living with HIV or AIDS in this state.)
These latest numbers lead people like CAP director Maloney to conclude that medical advances are causing young people, in particular, to become complacent. "A lot of teens think AIDS is just another sexually transmitted disease, and that if you take a drug cocktail, you'll be fine," she says. "AIDS is older than them, so they were too young to see all the people dying from the disease."
And even though the drugs are helping many people live longer, they don't work for everyone. The medications are hard on the kidneys and liver, so people with drinking problems often can't tolerate them. Others experience side effects such as nausea and diarrhea so severely that they can't leave their homes. Furthermore, recent studies show that more people are becoming infected with strains of the virus that are resistant to medication. Fourteen percent of HIV-infected people in the United States and Canada between 1999 and 2000 had strains that didn't respond to one or more of the current drugs compared to 3.5 percent between 1995 and 1998.
Recent numbers showed something else as well.
Between 1982 and 1990, black people accounted for only 8 percent of those presumed to have been infected with AIDS in Colorado; of the HIV cases tracked by the CDPHE between 1995 and 2000, black people accounted for 17 percent. In the Latino population, the number has also increased -- from 10 percent between 1982 and 1990 to 19 percent between 1995 and 2000. The number of women living with the disease has likewise increased; in 1999, women accounted for 9 percent of Colorado HIV and AIDS cases, up from 6 percent in 1990 and 3 percent in 1985.
Not only are the demographics changing, but so is the number of infected people with more than just health problems. In 1997, 44 percent of CAP's new clients were homeless or had chronic mental illnesses or drug or alcohol addictions; so far this year, CAP reports that 69 percent of new clients are suffering from those problems. But while AIDS organizations in the rest of the country have been experiencing similar trends, both in the rise of black and Latino clients and in the number of clients with needs ranging beyond HIV, Denver is behind other major cities.
"Denver tends to be three to five years out on the curve in changes in the epidemic, and it has been for the last twenty years," says Terence Shea, president of CAP's board of directors. "As these issues come up in Atlanta and Los Angeles and Miami but don't show up here, we get a false sense of security that Denver isn't going to follow the trend -- and then five years later, we follow the trend. That hinders our ability to get the message out."
Those changes, combined with the fact that people who have the disease are now living longer, has put a huge financial strain on CAP, which has had to transition from being an agency focused on helping people live out the remainder of their lives in comfort and die with dignity to one focused on helping people become self-sufficient so that they can live not only with HIV or AIDS, but with all of the other problems they face.
The organization's emphasis on reaching out to these new populations has caused a lot of strife within CAP -- and within the gay community that helped build the nonprofit.
Two years ago, the organization made a concerted effort to make sure that straight men, young men, women, Latinos and blacks would feel comfortable with its services. As CAP explained in its 1999 annual report, it saw its client base "increasingly diversify in 1999. A growing number of adolescents, women, heterosexuals and people of color became infected. CAP decided it was time for action."
That year, CAP's board of directors appointed a task force to examine the organization; as a result, it was restructured in an effort to be more cost-effective.
It also adopted a new image. The plain, corporate-looking CAP logo and the slogan "The loving touch of a caring community" was replaced with an image of different-colored hands reaching skyward and the motto "Hope Until Victory." The phrase was printed on press packets and CAP literature, and the nonprofit's public-affairs staff began to emphasize a new campaign called "Changing Face of AIDS, Changing Face of CAP."
But some of the gay white staffers at CAP resented the attention being paid to other populations. Gay men, after all, still constituted the largest population of people infected with HIV and AIDS both in Colorado and in the rest of the nation. Men who have sex with men accounted for 66 percent of the newly diagnosed AIDS cases and 64 percent of the newly diagnosed HIV cases in Colorado last year. The majority of those men are white.
"In their 2000 annual report, they say they strive to 'prevent the spread of infection in every community,'" says Joe Mauro, a grant writer who left CAP in May 1999 to work for another nonprofit. "That's a pretty tall order. If you're following an infectious disease, shouldn't you aim prevention at the majority of the population infected with HIV?"
In a February 22, 2001, interview in Resolute! a newsletter published by the People With AIDS Coalition Colorado, Julian Rush, who was about to step down as CAP's executive director, addressed the problem directly and talked about the tensions CAP's broadening focus had created within the organization.
"I can remember distinctly having staff discussions about things that we needed to tone down in the agency, because it had been a pretty freewheeling gay atmosphere...and it was a realization that we needed to have a place where gay people can still feel at home but not have the straight people feel uncomfortable," he was quoted as saying.
"I think the gay men that we had on staff who had come out early, whose socialization had been primarily with other gay people, really weren't that sensitive to how other people might feel.... But we became aware of needing to tone things down as we got more hemophiliac children who were positive, and that started the discourse among the staff on how to deal with these changes," Rush said.
"I can remember getting into a real argument with one of our case managers, who said, 'I have fought too hard for my gay world to make my office neutral,' to which I replied, 'It's not your office. Your office is a piece of CAP. Your home is your castle, but this is CAP's office that you're using, and you have to act accordingly.' I think there were all shades of response. There were the gay people who wanted to be more sensitive to everybody, and there were also the gay people who were digging their heels in and saying, in a sense, 'This is our epidemic, and we don't want to share it.'"
Thomas Bruner, executive director of the Cascade AIDS Project, which serves Oregon and southwest Washington, understands exactly what Rush was talking about. He has seen similar attitudes among people he knows. "As a gay man myself, what's that about? What's with the investment in owning AIDS? As gay men, we need to quit looking at AIDS service organizations as quasi-gay community centers that we founded for ourselves and begin looking at them as human-services agencies for everyone," he says. "Gay men ought to feel just the opposite. I mean, look at what we did. We stepped into the middle of a scary crisis and created a community-based response. Look at the gift we gave. These organizations are now poised to help others in addition to ourselves."
Maloney was also aware of those attitudes when she assumed her new post in October. She'd been CAP's director of public affairs and marketing for two years prior to that. "I was nervous about that," says Maloney, who spent the first few weeks in her new job meeting with longtime CAP supporters. "I wanted to make sure that the people who supported us all along the way wouldn't feel a disloyalty from us. I wanted to make sure we showed them we were grateful to them." A lot of those feelings have since dissipated, she adds. "I think people realize it's a disease that doesn't discriminate and that we need to reach out to everyone. We are in a place now where we continue to serve the gay, lesbian, bisexual and transgendered community while also addressing the new trends in the epidemic."
But CAP's slow reaction to change in the past few years and the perceived attitudes of some of the people involved with the organization have had the effect of driving clients away from CAP and toward newer organizations.
Five years ago, Lorenzo Ramirez, program supervisor at Servicios de la Raza, a 29-year-old agency that provides Latinos with substance-abuse and mental-health treatment as well as senior and youth programs, formed La Gente, a program within Servicios for Latinos who are HIV positive. But Ramirez had to fight for five years to create the program. "Our executive director really struggled with taking [HIV] on because of the social and cultural issues," he says. "It's a taboo issue to talk about. Sex is taboo in the Latino community, and to talk about HIV, you need to talk about sex. As a community, we had to talk about homosexuality, too. I told him, 'If we don't deal with this now, we'll have to talk about it later.' We weren't sure people would even come, but within one year, our caseload went from three to sixty.
"Agencies like CAP weren't handling those cases, because they didn't know how to or because they didn't have the cultural competency to reach out to the Latino community," says Ramirez, who served on CAP's board of directors for six years before leaving in August, when his tenure expired. "What they're trying to do is be the agency for everyone and serve people of all backgrounds. I have heard that cultural competency is not there, but the whole notion of cultural competency is a journey. It's not just a workshop you go to and walk out of. It takes time to become culturally competent. They really have their work cut out for them if they want to be the agency for everyone."
Abel Alvarado, the case manager for La Gente, says Latinos with HIV are often too intimidated to go to CAP, which is located on East Colfax Avenue, because it serves a mostly English-speaking clientele in a predominantly white neighborhood. "They're located in a heavily gay area because that's where the infections first started. As long as services are not in the Latino community, Latinos won't get the services," he says. "Even gay Latinos tend to stay in their own neighborhoods. Why should someone in North Denver travel to Capitol Hill?" (CAP does have a clinic in Five Points, a neighborhood that's 43 percent Latino and 25 percent black, according to 2000 census data.)
The People of Color Consortium Against AIDS is another organization that formed in response to the growing number of Latinos and blacks with HIV. It was created in 1990 to provide AIDS-prevention education in different ethnic communities; four years later it started providing case management in response to the growing demand for services from minorities who felt they weren't getting their needs met at CAP, say people who have been involved in that organization. POCCAA started the first support group for black people living with the disease, as well as the first Spanish-speaking HIV/AIDS support group. La Gente also offers a support group for its clients.
The People With AIDS Coalition Colorado, which formed in 1987, went through its own growing pains as it saw its clientele diversify. The PWA Coalition is a minority-based organization, meaning half of its board is made up of people of color. But it wasn't always that way. "We turned our organization around in the last three years because we saw that minorities and women weren't getting the same results [in terms of HIV prevention] as white men, so we figured they weren't getting the same access to services," says executive director Al McKittrick. "We had to unseat the board and start over, and it wasn't fun, because our board president, who was a wonderful man, was also the donor of $50,000 a year. We had to kiss that goodbye. It was most of our budget then.
"We didn't have much of a staff back then," he continues. "But after we shook up the board, we started hiring people of color. Our emphasis in the next year will be in the African-American community, because we haven't reached them as much."
The PWA Coalition pairs clients with peer advocates, who help with everything from finding doctors to getting housing assistance. "If people are having a hard time getting what they need, they come to us," McKittrick says. "We find inconsistencies in every agency and every clinic. We serve many of the people who were disgruntled with the services at CAP or Servicios or POCCAA. Sometimes they have a legitimate complaint, and sometimes, because of their mental-health issues or substance-abuse problems, they're just difficult to work with. What it boils down to is the personality of the client and how they interact with the person who's helping them, more than whether they're black or Latino or white."
Ramirez and Lease, of the Empowerment Program, say the key to CAP's success in reaching out to an increasingly diverse clientele will be to collaborate with small organizations like theirs that focus on specific communities.
"You can't be successful without truly working with other organizations," Lease says. "Right now we are not collaborating. It's not in our Western culture, and it's not in the culture of community-based organizations to work together. Foundations encourage competition, and consequently, each agency spends time writing grants to the same foundations for the same money."
She offers a recent meeting of AIDS organizations as an example of what happens when agencies don't work together. People from CAP were talking about starting a back-to-work program for unemployed HIV clients, but the Empowerment Program, which has already been doing employment training for many years, wasn't consulted. "If you always think you have to do everything on your own and not work with others, fundraising is hard," she says, adding that she understands how the culture of isolation formed at CAP. "CAP got no government money until the end of the 1980s. The way CAP survived was through private donors and cocktail parties. They grew up as the scrappy kid on the block having to take care of themselves and being hated by everyone because of the stigma and fear around AIDS. So you can see how CAP has evolved; it makes perfect sense. But some of those early ways of doing things have left a legacy that might not be so helpful to them in 2001. CAP can't be the lone ranger anymore."
But Bruner, of the Cascade AIDS Project, believes having so many community-based AIDS organizations in one region could be part of the problem. "They spring forth in this never-ending way," he says. "It's as if every subset of a subset impacted by this disease needs their own organization, and that's just baloney. If every time a new demographic comes about we create a new agency, we'll be sunk. There's an American Cancer Society, not a cancer society for women, for black people and for homeless people.
"What you end up with is a pretty fragmented and sometimes duplicative field of service providers, and it's pretty cost-inefficient," he continues. "The other extreme is to have one mega-AIDS organization in every region that imposes a one-size-fits-all approach, and you don't want that, either. But is it reasonable for CAP to shift and try to respond to the changing face of AIDS? Absolutely. It has an obligation to."
Turnover and change within CAP have made that nearly impossible, however.
Thirty employees have left CAP since January 2000, many because they were disgruntled with the organization or burned out by the difficult work and low pay. Others were fresh out of college and never planned on staying long. There are now only nine case managers for CAP's 1,550 clients, and they get paid around $25,000 a year. Whatever the reasons for the rapid employee comings and goings, it's had an impact on public perception, Mauro explains; CAP conducted yearly client surveys when he worked there, and he recalls that high turnover was one of the top complaints.
CAP experienced further instability when longtime director Rush left at the end of February.
"I had decided that when I turned 65, I wanted to do something different," says Rush, who is now the executive director of the David Taylor Dance Theatre. "I made a pledge to myself when I left CAP to drop out of the AIDS community in order to be fair to the new director since I'd been there so long." (Although Rush agreed to talk to Westword about AIDS and the challenge of fundraising, he wouldn't address specific issues about CAP.)
The new director, T. Scott Pegues, who'd worked as community education manager at the Minnesota AIDS Project, lasted only five months. "The reason I'm not there anymore is that there was a significant difference between me and the board about how the agency should operate," says Pegues, who now works as a consultant on HIV-related research for the state health department. "The board and I wanted the same thing...an agency that was more financially stable, that reached out to a broader community and that created a continuum of care. My approach was to better involve the community, to empower people outside of the agency. I didn't understand what their style was.
"I guess the official word is that I wasn't a good fit and that I agreed," he adds.
He's right: The only explanation CAP would offer is that he wasn't a good fit.
The organization also tried a number of things to save money and achieve more consistency. In 1999, for instance, it combined its Wellness Resource Center, which is in charge of providing services to clients, with its Prevention Center, which provides AIDS education. The two departments were separated again a year later. The changes created confusion and dissension among the staff.
"It didn't seem like the staff was in the loop...until decisions were made," Maloney acknowledges. "I understand that frustration. That was a learning curve in how to communicate to the staff. That's something we're striving to do better."
The turmoil didn't go unnoticed by donors -- or by volunteers, who are just as crucial to the organization; CAP relies heavily on unpaid supporters to answer phones, to speak publicly about AIDS and to help solicit participation in fundraising events. "People who had been giving money said, 'No way, I'm not going to give money this year,'" says former CAP case manager Garcia. "People are talking about what's happening there. The community has a right to ask for answers, but they don't want to give reasons for things like why Scott really left. Everything is this big secret.
"If you don't communicate with the community openly, all these rumors start going around," Garcia adds. "People in the community are asking how long Deirdre [Maloney] will be there."
Although former donors and volunteers contacted by Westword declined to discuss their reasons for ceasing or reducing their support, several former employees say the internal dissension was partly to blame. "The clients used to be the biggest fundraisers because they would go out and talk about HIV," says one, who spoke on condition of anonymity. "Now it's hard to find a client willing to speak on behalf of CAP. People are not going to donate if their brother or their friend isn't getting services. If you provide the services compassionately, the money will come back twofold."
The former employee also noticed that some clients received better treatment than others. "There's a certain amount of subjectivity on the part of the person who decides whether they should get money. Someone may decide that the person is being untruthful about their circumstances without any proof, like, 'I think he's smoking up his money and then coming to CAP,'" the former employee says. "If you're not going to give money to drug users because you think they're going to waste it, you need to use that standard across the board. A gay white man who drives to CAP in his Volvo may have substance-abuse problems, too. He just may be doing meth instead of the black man off the street who's doing heroin. They'll assume the black man is using his CAP money for drugs instead of food or rent, but they won't question the gay white man."
As former chair of CAP's client committee, which formed eight years ago as a way to give clients a voice, CAP client Reggie Champion is familiar with such complaints. "I've had many people of color come to me and address issues of how they were treated," he says. "If a person was in line to get groceries and he was white, he'd get more, but if he was Latino or African-American, he'd get less; blacks and Latinos would get less emergency assistance money; CAP would pay full rent for white people, but not for people of color."
And Champion, who's black, says he's experienced that kind of treatment firsthand. "I went to them for cell-phone help. My bill had gotten behind and I needed assistance, but they told me they don't assist with cell-phone payments. I found out later that they paid someone else's cell-phone bill. He was a white guy."
Champion chaired the client committee from October 2000 to July 2001, when CAP replaced him with a staff member. The staff person, he says, implied that the reason she was taking over was because clients weren't getting an equal voice under the committee's previous structure. "That's not valid. We followed parliamentary procedure, and everyone had an equal voice," he says, adding that since the staffer took over, participation at the monthly meetings has gone from between twenty and thirty clients to six or seven. "Most people don't come because they figure it doesn't mean anything anymore. It's not a platform for the clients; it's a smokescreen."
Maloney says that replacing Champion with a staff person was not an attempt to wrest control from the clients, but to make the meetings more efficient; having a staff person familiar with what the agency can do to address clients' concerns just made more sense, she says.
And other, more subtle things have alienated people, according to clients and former employees. Up until a few years ago, CAP would give people $10 food coupons each month that could be redeemed at grocery stores. "That wasn't a lot of money, but it was a gesture that said, 'We care about you,'" says the former employee. "When they cut that, it created a lot of bad will among people who triggered a lot of donations."
CAP also used to let clients eat lunch in the waiting room, but at the request of case managers, the organization asked Project Angel Heart, a food bank that collects food for people with HIV and AIDS, to stop delivering meals there in the spring of 2000; at one point, some people at CAP proposed removing chairs from the lobby because clients were loitering as they waited for taxis to take them home. Over the years CAP has also debated whether to cease its annual toy drive for children of parents infected with HIV or AIDS, but so far, that hasn't happened. "They don't see the need to do those social feel-good things because they feel like they're just there to provide basic services," the former employee says. "The agency has lost sight of what it's there for. It's supposed to be about serving people."
Maloney knows CAP hasn't done the best job of communicating with people, and she wants to change that, as well as correct what she says are misconceptions about CAP. The reason a lot of clients complain that they don't get the services they need is because grants come with restrictions that force the organization to turn down a lot of requests for assistance, she explains. "One of the biggest misconceptions out there is that we get to give out money as we see fit. The majority of our money for client services comes from Ryan White and HOPWA (Housing for People With AIDS) grants, and those grants have specific needs," she says. "Living with the disease and the stigma is hard, and they just want help. They don't want to be turned down. But when we say we can't give money, it's not our choice."
The federal government gives out Ryan White emergency and housing grants, named for the Indiana teenager who got AIDS from a blood transfusion in 1984 and died six years later. Ryan White emergency grants can help low-income clients pay for prescriptions or phone and utility bills. But that money can be used only for the most current bill, not bills that are past due. People also can't exceed more than $200 in phone-bill assistance each year. Some clients whose income qualifies them for housing assistance through the federal government's HOPWA program can't get that money if they already live in subsidized housing. Those are just some of the many ways CAP's hands are tied, Maloney explains. "I think that's very hard for our clients. When we have to turn down a client's request, it's not a won't, it's a can't.
"CAP has had a very chaotic eighteen-year history and has made a lot of mistakes. I don't think we're perfect by any stretch, but we're trying to acknowledge those mistakes," Maloney says, referring in particular to the way changes within the agency have been handled. "We made some specific choices about restructuring the organization and about how we communicated it to our staff, to the community and to the clients. We're trying to be consistent now in the messages we give to the staff and the community and to keep everyone in the loop. Far too often, it feels like the staff and the board and the executive director are doing different things when we're really all in this together."
Just how much of an impact CAP's past mistakes have had on donations is impossible to measure, but the fact is, contributions are way down. In the 1997-1998 fiscal year, CAP had almost $3 million in revenues; $1,615,948 of it came from individual and corporate donations, private grants and fundraising events. In the 1999-2000 fiscal year, CAP had $2.8 million in revenues, but only $1,291,086 came from those sources.
The income from fundraising events alone has dropped dramatically, from $972,880 in the 1997-1998 fiscal year to $567,868 in the 1999-2000 fiscal year.
For fourteen years, CAP has organized AIDS Walk Colorado, a 10K walk that benefits about twenty local AIDS service organizations. In 1997 it raised a record $1.4 million. But this year, the walk garnered only $880,000. Still, it was a gain over the previous year, when CAP spent $200,000 to pay a private events company to recruit corporate participants and design promotional materials. CAP went back to producing the walk itself again this year.
This year's Leadership Recognition dinner, another annual fundraising event, which was held in October in honor of Julian Rush, fell $15,000 short of its projected goal of $50,000. Because of that, CAP is postponing the start dates for three employees who were to have begun their new jobs in December.
Despite these losses, CAP's total revenues have stayed about the same, because its government grants increased from $1,271,637 in fiscal year 1997-1998 to $1,522,633 in fiscal year 1999-2000. But because donations haven't grown at the rate of government support, CAP is having to do more with roughly the same amount of money; the number of clients has grown from 1,400 in 1997 to 1,550 this year.
In the 1998-1999 fiscal year, CAP spent $70,592 on counseling services for its clients; in the 2000-2001 fiscal year, the organization spent $91,150. The nonprofit spent $504,420 on housing services in 1998-1999 and $897,000 in 2000-2001. It doled out $494,423 in emergency financial assistance (things like phone, utilities and rent for clients who couldn't pay their bills) in 1998-1999 and $786,531 in 2000-2001.
To balance its budget, CAP has had to lay off employees and cut programs. Last year the organization had a staff of fifty and eliminated four positions; it also froze pay raises. Instead of doing the same this year, CAP laid off an additional three people. "People are fighting a tough battle, and they need to be compensated," Maloney says.
With those staff positions also went some longtime services. The Buddy Program, in which volunteers provided clients with emotional support and help with daily activities, was eliminated this year. "That was one of CAP's first programs, so it was really devastating to lose that," Maloney says. "But it didn't serve as many people as some of our other programs, so it wasn't as cost-effective."
The intensive case-manager position was also cut. That person worked one-on-one with about twenty people who were not HIV-positive but who were considered at high risk of getting the disease; the case manager helped them understand how their behavior was dangerous and how to prevent infection. The money from that position was then shifted to the speakers' bureau, which had been unstaffed for more than a year because of a lack of funding. The person in charge of the bureau arranges for clients to speak at schools and other venues about HIV prevention. CAP chose to reallocate the money because the speakers' bureau affects more people, Maloney says.
Former CAP grant writer Mauro says the agency wouldn't have to cut services if it wasn't so top-heavy. More than half of CAP's 2000 budget was spent on salaries and benefits; the next biggest expenditure -- $916,000 -- was for client services, and the rest was spent on contracted services, advertising and overhead. "It's a bureaucracy run wild," Mauro says. "The cynical donor might say, 'Why should I give to an agency that's self-perpetuating?'"
Mauro doesn't understand why the public-affairs department spends more than the development department --$259,285 versus $229,136 -- which is directly in charge of bringing donations into the organization. "If you're talking about needing to raise more money but you're spending it at the rate your money-earners are, there's something wrong.
"By the mid-1990s, a lot of the stigma [around AIDS] disappeared. Tom Hanks had done Philadelphia. People were wearing red ribbons all over the place. AIDS patients were no longer the pariahs they were a decade ago. So why the need to spin?" he asks.
But Maloney defends CAP's expenditures, saying, "Public affairs has a major role in bringing money in. I agree with the way the organization is structured."
Mauro also has concerns about the way Cornerstone, CAP's individual donor program, has been managed. "It has floundered, and there are a lot of questions about what happened to that," he says.
Maloney admits that the attention paid to donors has waned in recent years. People who gave more than $250 a year used to receive thank-you notes as well as invitations to donor-appreciation events. "We did go through a period in the last few years where it wasn't as active as it could have been," she says. "Maybe thank-yous and reminders didn't get sent out. One of the mistakes we've made is not thanking people enough. We've had a lot of people who stuck it out with us through thick and thin and probably didn't know why they stood by us. I don't think they know the difference they've made for us. We're planning on redeveloping and reintroducing Cornerstone. It's one of our main projects this year."
Maloney also thinks CAP needs to get creative about attracting new contributors. "We need to think of new ways to raise money," she says. "We're going to have a new fundraiser this year -- a golf tournament -- and we're researching other grants and trying to think of other businesses to reach out to."
While Maloney acknowledges CAP's past mistakes, she and past board president Tom Buche and new board president Terence Shea attribute their funding woes more to the public's perception about AIDS. They blame complacency about the epidemic, along with the fact that AIDS is no longer a media darling.
"In the mid-1990s, we were in our heyday with regard to AIDS awareness," she says. "That was when everyone in Hollywood wore red ribbons. It was a politically correct cause. People think that as time goes on, awareness goes up, but that's not the case. A lot of people are tired of hearing about AIDS. Every cause has its time in the limelight, and since AIDS isn't in the limelight anymore, it's hurt us. Funding nationally for AIDS-related services has gone down 20 percent."
In addition, the red ribbon seems to have been replaced with the pink ribbon as breast cancer has become the disease of the month, Maloney points out. If the amount of money raised for this year's Race for the Cure is any indication, she's right. The Denver affiliate of the Susan G. Komen Foundation -- a national nonprofit that raises money for screenings and treatment for low-income women as well as breast cancer research and education -- raised approximately $2.3 million from the race this year, and the checks are still coming in, says Nancy Olson, the local affiliate's executive director. Last year's race raised $2.1 million. That increase was especially significant considering that this year's race was held less than a month after the September 11 terrorist attacks. The Denver affiliate, which has been holding races for nine years, had to stop publicity for the event for ten days as a result of the nonstop media coverage of the attacks.
A national study of philanthropic organizations conducted by New York-based nonprofit Funders Concerned About AIDS confirms that donations have indeed decreased for many organizations like CAP. From 1996 to 1997, philanthropic giving for organizations providing HIV- and AIDS-prevention education, treatment and research, went from $37 million to $30 million, a 19 percent decrease, while philanthropic giving overall increased more than 15 percent during that same period, according to the study, titled Philanthropy and AIDS: Assessing the Past, Shaping the Future.
The reasons funders gave for the decrease in contributions were varied: Some chose to give less to AIDS organizations in favor of funding the broader health-care system; some felt they hadn't seen the results they'd hoped for; others said that because of the numerous requests for their support, they'd expanded their giving to other causes. One private foundation explained, "After ten years of giving, we felt that if we had to exit a program, this would be the one. It is sort of a 'been there, done that' mentality. As the epidemic has become more and more linked to issues of poverty, it is not so clear that it is a 'scientific' problem to solve."
AIDS service organizations offered their own assumptions for the decline in giving. "People with HIV don't look as much like grant makers as they used to. Higher numbers of people with AIDS are impoverished, substance-abusing, mentally ill, homeless -- populations that foundations have difficulty impacting. AIDS is now combined with many complex social issues -- this is too difficult for foundations to address," one HIV/AIDS funding collaborative stated.
Some nonprofits looked inward for answers. "HIV/AIDS organizations themselves admit that 'we in the community did a really bad job in engaging philanthropy.' They cite ongoing leadership changes and relative instability as significant barriers to engaging philanthropy consistently over time," the study found.
A Midwest AIDS service organization said, "They (philanthropy) are saying, 'We want innovation, we want new things.' As the epidemic changes, most of it is just taking old programs and switching populations. Old programs for new populations may not be innovation for funders, but it is what is needed."
Funders Concerned About Aids has since followed up with another study, completed earlier this year, which shows the dip in philanthropic giving leveling off and, in some cases, rising again. About 40 percent of the funders included in the study reported that their HIV/AIDS funding had stayed the same, while 25 percent reported an increase.
In Colorado, there has been a general decrease in giving to HIV/AIDS organizations because of the economy, but none of the groups have experienced the drop CAP has. The Boulder County AIDS Project has seen a 10 percent decrease in attendance at fundraising events and is anticipating a budget shortfall in the next fiscal year.
BCAP had $840,000 in revenues last year and was planning for a $950,000 budget this year. "We're probably going to come in under $800,000," says Robin Bohannan, BCAP's executive director. To make up for the loss, BCAP cut administrative costs by 30 percent and is eliminating positions by way of attrition. "We're not going to cut programming," Bohannan says. "We'll do bake sales before we do that."
Jorge Figueroa, executive director of the Northern Colorado AIDS Project, which serves eight counties, hasn't had to eliminate any programs to maintain his organization's annual $350,000 budget, either. "Our fundraising events haven't been as successful as they have in past years, and the average donor size has decreased," Figueroa says. "But we haven't experienced any significant decreases. It just means we've had to work harder."
And fundraising has remained fairly steady for the Western Colorado AIDS Project, which serves people in 25 rural counties, says executive director Jo Rosenquist. Her organization also has an annual budget of $350,000. "We don't have a PR or marketing person. We just have a couple of outreach coordinators, and all of our fundraising is done by volunteers," she says. "There's a lot of difference between our AIDS project and CAP. In a little county like Dolores, for instance, you know who you're raising money for. In a large metro area, you might not have that personal connection. Chaffee County raised $5,000 in their little AIDS walk. The sense of community may be stronger in the rural areas."
And the Southern Colorado AIDS Project, which serves 24 counties, has actually seen gains. SCAP's annual budget has grown from $700,000 to over $1 million in the last five years, according to marketing and development director Kevin Hattery. "I'm not suggesting anyone's crying in their soup, but you have to go after the resources."
Interestingly, a nationwide survey about AIDS awareness released in May by the Kaiser Family Foundation shows that Americans still view AIDS as a top health concern. More than one in four Americans listed the disease as an urgent health problem, second only to cancer. Almost half said AIDS is a more pressing problem now than it was a few years ago. More than half of the Latinos and blacks polled said they're personally concerned about becoming infected, and a majority of the young adults surveyed said that they, too, are worried about getting HIV.
Former executive director Pegues says CAP could be successful at fundraising again, but only if it changes its approach. "It's not that they're not sophisticated or creative in fundraising; they have a good mix of fundraising events, from bar parties to black tie. It's how they shape the message that's a challenge for them," he says. "So much of their approach around funding is around crisis. When you continually say over time, 'We need help, we don't have enough money,' people lose confidence in what you're saying. They've been saying that for ten years. They need to say that AIDS is a chronic epidemic and that they'll need help now and well into the future."
Maloney admits that poor treatment of donors and word-of-mouth stories spread by clients could be partly responsible for the drop in CAP's fundraising. "That wouldn't be surprising," she concedes. "Again, we've made mistakes -- and then there are the people who are unhappy no matter what. Our history has been a tough one, and sometimes people will look to the past rather than to our hopes for the future."
Everyone seems to agree that working together with other organizations is the key to successfully evolving with the epidemic. "Because of the new leadership at CAP, for the first time, we may have a staff and a board that works together for the clients," says the PWA Coalition's McKittrick. "The board is very strong at CAP. There were different goals and directions between the board and staff for a long time, and they weren't collaborating with different agencies because they weren't collaborating among themselves."
Maloney seems to understand that. "It's probably up for debate whether we've bitten off more than we can chew," she says. "Collaboration is the wave of the future. There's this perception out there that CAP has this big ego -- that we're the big guy in town. Well, I'm here to tell you we're not about ego. We need to get together with other AIDS agencies to collaborate. This is definitely a turning point. We need a dialogue about how to be more cost-effective."
Board president Shea agrees. "When you look at the number of women, black people, immigrants and homeless people we're serving now, it changes everything we do and how we do it," he says. "That raises a lot of questions: How does one organization do everything? Can we do everything for everybody? How do we focus on what we do best?"
While CAP's challenges include healing old wounds with donors and clients, coming up with new and creative ways to raise money, responding to changes in the epidemic without spreading itself too thin and collaborating with other agencies, the nonprofit's critics are also facing a challenge: to learn how to adapt along with the organization. Some understand that CAP simply can no longer operate as the grassroots agency it once was, but others continue to resist change.
"In the 1980s, the PWA Coalition was totally volunteer-based. We've had to become more professional, and that's been a struggle," McKittrick says. "All AIDS service agencies have struggled with going from grassroots groups to professional human-services case-management organizations."
The Cascade AIDS Project has also recognized the need to be more professional as the needs of its clients have changed. Bruner, Cascade's executive director, says complaints about agencies not offering compassionate services, such as grocery-store coupons and meals in the waiting room, are ridiculous. "I would never do that here. That's crazy. No health and human-services nonprofit operates as a drop-in day center. Some people feel that once an organization does something, it has to do it forever more, and that's crazy, too," he says. "Ten years ago, people who had AIDS were usually dead within a year. Look at the dramatic increases in life expectancy and life quality in the last few years. If people are only living for a few months and need a place to hang out, my God, let's do all those feel-good things, but why should the agency be a drop-in lunch place for people who are doing better? Get your own lunch!"
Agencies like CAP, Bruner continues, "can't consist of the same ten people who hug everyone who walks through the door; they have to become more businesslike. To bemoan the loss of the touchy-feely grassroots response of the past is outdated. We've fast-forwarded twenty years, and it's not just about HIV now; it's about homelessness and drug addictions and mental-health problems and on and on, and it's probably not going to feel like it did in 1984 anymore.
"The role of places like CAP is different now. They're about how to help people live with this disease and be self-sufficient," he says. "I'm more focused on those things than on the feel-good stuff of years ago. Back then, we did lots of things that were small, immediate gestures to ease people's pain, but we can't operate like we used to."