25 years into AIDS epidemic, SF examines its system of care
by Matthew S. Bajko
Over the past 25 years of the AIDS epidemic, San Francisco built up a system of caring for AIDS patients and delivering HIV prevention strategies that served as a model for cities and governments the world over. San Francisco's model of care has been so successful that many people with HIV moved to the city to take advantage of it.
Myriad AIDS service organizations and city health programs were created over the years to take care of these patients. The health department's AIDS Office listed 133 different agencies and programs in its 2003 booklet "HIV Prevention and Social Services in San Francisco."
The city's array of services is credited with helping many people with HIV and AIDS live longer and have healthier, fuller lives. City officials estimate between 18,300 and 19,600 residents are HIV-positive. For many, having the virus is no longer seen as a death sentence but as a chronic, manageable disease.
But the change has brought new burdens to the city's model of care. Along with ever declining federal funds for AIDS services, the changing needs of today's AIDS survivors are taxing the system in ways never thought possible in the early days of the epidemic. In 1981 life expectancy for a person diagnosed with HIV was as short as six months. Today, due to ever advancing treatments for HIV, a person newly diagnosed can live for decades.
The growing realization is San Francisco's model of care is not only outdated and needs to be fixed, but a city that is 49 square miles can no longer afford to fund so many different agencies. A growing chorus of voices â€“ from the mayor and agency executives to donors and AIDS advocates â€“ is pushing AIDS service providers to seriously consider merging, consolidating or collaborating with one another.
"Our neighborhood service model is the envy of the nation. I am not arguing for a central dispensary of care. We need to be very careful not to dismantle that continuum of care," said Mayor Gavin Newsom. But he added, "There is redundancy. We need to focus on where the dollars are going so it is not funneled through as many agencies. It needs to be directed to services."
Newsom stressed that the city is not fiscally capable to make up for continued reductions in federal funding.
"What do you want to fund? With every decrease is a choice. There is not an endless pot of money here. There are tough choices to be made. The city can do a lot but can we do everything? It is difficult to say," said Newsom.
Al Baum, a 48-year resident of San Francisco and longtime contributor to many AIDS agencies, wholeheartedly agrees with Newsom that the city can no longer afford so many agencies. A gay man who has lost "many, many friends to AIDS," Baum recently broached the topic of reducing the number of AIDS agencies during a speech last month at the San Francisco AIDS Foundation's annual dinner, where he was presented with the agency's Community Service Award.
"Our city became famous for our 'system' of fighting the epidemic, with an organization for every piece of what was needed â€“ prevention, treatment, research, housing, transportation, hospice and advocacy, to name a few of the components. Agencies proliferated to specialize in outreach to donors and people living with AIDS in many of the ethnic and social groupings that constitute our diverse population. For years, this 'San Francisco system' of dozens of organizations worked quite well. But now, in my personal opinion, it is not working as well and needs to change. The need for services remains the same or greater than it was before the 'magic' protease inhibitors changed the face and profile of the pandemic, but the amount of money available to those in our city that fight the good fight against HIV/AIDS has diminished," said Baum. "It seems to me that one way to reduce expenses without reducing services is to cut overhead. I do not know of much, if any, duplication in actual programs, but as a donor to many AIDS organizations (18 in 2005, for example), I know that there is duplication at least in administration â€“ executive directors, development directors, chief financial officers, and the like. I've been around awhile, and I think I'm realistic about the difficulties of combining any two operations, nonprofits as well as for-profit companies, but I know that such combinations can work well, when the boards of directors honestly want change to work, and when there is careful planning in advance so as not to disrupt services."
Baum urged the audience, many of whom were major funders to AIDS organizations, sit on agency boards or work at various agencies "... to study the present situation and the likely impact of further decrease of government funding, with an eye to 'mergers and acquisitions' that will strengthen the fight against AIDS."
In an interview, Baum said he has thought about the need to reduce the number of AIDS agencies for at least five years, and gave a speech striking a similar note in 2001 that elicited little response. This year, he said his speech resonated with more people.
"I have gotten really quite surprisingly positive responses to my remarks," Baum said. "It comes up a lot with donors. There are sort of two sides to the argument. One reason why San Francisco has been so successful in the fight against AIDS is because of the multiplicity of organizations. It harnesses a lot of volunteers, so you don't want to lose the baby with the bath. I happen to believe in a middle course where you keep the advantage of having citizen involvement but also streamline and cut down on expenses as far as economy of scale."
Over the years several agencies have merged, such as New Leaf: Services For Our Community, which was born out of the 1995 merger of Operation Concern and 18th Street Services, and the Asian and Pacific Islander Wellness Center, created in 1996 when the Asian AIDS Project and Living Well Project joined together. Currently, the Tenderloin AIDS Resource Center and Continuum HIV Day Services are in the process of becoming one agency known as Tenderloin Health.Â
Not everyone agrees the best approach to dealing with less funding is to push agencies to combine forces. Jim Illig, a health commissioner and director of government relations at Project Open Hand, is not convinced mergers are the answer or that the city's system of delivering care should be overhauled.
"I am not sure I agree the model of care needs to change. I favor having a diversified service system of community-based providers rather than a centralized model. Yes, there are a lot of different agencies all having overheads, but the positive side is they are much closer to the communities they serve," said Illig. "In a city like this with great diversity, there is a need for an equally great diversity of service providers focused on certain subgroups."
Before whittling down the number of service providers, Illig wants to see the city do a better job of tracking where people are going to get services.
"There are too many silos in city government and in the health department. All these divisions deal with AIDS. The same individual can be getting care from different divisions of the department that don't talk to each other. We are very rich in resources but don't coordinate well," said Illig. "I think the first thing we need to do is get a combined database to find our where these people are getting served. There are so many examples of resources used well but just not coordinated."
When he served as the city's director of HIV prevention, Steven Tierney repeatedly pushed agencies to examine possibly merging or consolidating with one another. In the summer of 2004 he held several meetings with service providers titled "Strategic Alliances, Collaborations and Mergers: The Future of HIV Prevention Services." The workshops covered everything from how agencies could work together on purchasing and providing services to sharing employees and staff or simply folding together to become one agency.
"We told everybody there is a limited amount of money and as medications get better more people will need care. At the same time CARE money is decreasing; it will impact the system in very significant ways. The hard question is do we need 50 executive directors, boards, and bookkeepers or more intensive substance abuse programs and relapse retention programs?" recalled Tierney, who left the health department last December to become the deputy director for programs at the San Francisco AIDS Foundation. "In San Francisco, it doesn't seem like it yet that people are sharing staff or purchasing. In my job I am looking at that now. Are there ways we can be more effective in supporting services people have to have without the ego of us doing it ourselves? Maybe there is a community group that can do it and we help pay for it. It is not about us going to the Castro but how do we partner with the agencies already there so we are not funding seven instead of six to do outreach in the community."
Time is right
Tierney said the time is right to re-evaluate what services the city funds.
"Twenty-five years is a good time to ask is the system the best? Can we meet the needs of today?" said Tierney. "We are not taking care of everyone with AIDS now. We need to be strategic about how we spend money and what result
Jimmy Loyce, deputy director of the AIDS Office since 2000, convened what he calls the San Francisco HIV Health Planning Working Group earlier this year to start the process of revising the city's system of care. The group, comprised of representatives from the HIV Prevention Planning Council, the HIV Health Services Planning Council, the AIDS Office and the HIV Providers Network, plans to begin holding public meetings this summer to gather input on what services should be funded.
"If we can come up with a revising of the San Francisco model we can create change," said Loyce.
Loyce said the meetings will present "what the San Francisco model looks like, here is what we are focusing on as far as dollars," and ask the question "What should we be doing differently, is it time to change the San Francisco model?"
"We never thought people would age into HIV. We have an aging HIV population in their late 40s, 50s, and 60s," said Loyce. "In my view we have never taken the time to assess if the San Francisco model as currently configured is meeting the needs of people living with HIV and AIDS as it affects them today."
Loyce hopes to finish the process by the end of this year or early 2007 so the plan is in place by March 1 when the city could begin to see its federal funding cut. Over the course of the next Ryan White CARE Act, San Francisco will see its funding decreased by $7 million over three to four years. He said as part of the evaluation no agency is sacrosanct.
"I have never been wedded to any agency. I am wedded to providing services to people who are infected and those who aren't infected," said Loyce. "We are a 7x7 city so you have to wonder. In the beginning of the epidemic it's one thing but 25 years later as resources shrink we have to look at how we deliver services in San Francisco."
Array of services needed
Bill Hirsh, executive director of the AIDS Legal Referral Panel, stressed that it is important for the city to provide a wide array of services to people living with HIV. Hirsh, who has seen his agency's public funding cut over the years, said an array of services is important for meeting people's health needs.
"We know just giving them their medications is not enough," he said. "No one is saying the system of care is broken. [But] we know it is going to have to change and we want to manage the change to make the most sense to ensure people get the services they need. While I think the talks around mergers and efficiencies of services are important, it is important to appreciate how incredibly efficient the service system already is."
Both Loyce and Tierney are advocates for seeing the current model of care become fully integrated into a model of health. Tierney, for one, wants to see the city change how it evaluates if a program is successful, and thus receives funding.
"I am a big supporter of really coming to see health outcomes. If there are 50 agencies that do prevention and another 48 that do care how good are they at it? Maybe they all meet basic standards but at this time it is possible to get people onto medications and measure viral load, which should be undetectable," he said. "We really need to be creative in how we measure programs. A lot of evaluation is attendance. Over six weeks how many people came? If a group is for 10 people and at the end of six weeks they are all still there that is seen as successful. But so what? How many reduced their viral load?"
While he may disagree on the need for merging agencies, Illig does support seeing the health department focus more on health outcomes in the programs it funds. At the commission, Illig said he repeatedly asks what is being bought when a contract for a program is approved.
"What I am trying to do is push the whole issue of outcomes. In a lot of cases we are finding the outcomes are ridiculous," he said. "I want programs focused on what change are we trying to bring about. Naturally, ones that aren't effective will fall by the wayside because it doesn't have good outcomes. Mental health programs have outcomes directly linked to keeping people out of the ERs. We need the equivalent with every program."
Troy O'Leary, 32 and HIV-positive for seven years, is a proponent for seeing AIDS services delivered in a "one-stop shop setting." O'Leary, who helped evaluate which community groups should receive grants from the Horizons Foundation and San Francisco AIDS Foundation this year, used his experience of being a patient at Kaiser and getting his care at one place as a guide in selecting what proposals to fund.
"We took that into account, knowing that people wanted community centers with everything under one roof. Ultimately, that is what is needed â€“ where folks go to get an overall wellness approach and everything is in one place instead of having to navigate many different places," said O'Leary. "I know I have experienced and enjoyed having everything through Kaiser. Definitely, it is easier for youth. Instead of having to navigate many different agencies, it is nice to navigate one."
At a meeting held last month at the Mission Neighborhood Health Center designed to allow community members to voice what services they think are important for people with HIV and AIDS, the 20 men, mostly Latino and in their 30s and 40s, named health care, housing, mental health, and case management as top priorities.
One man, speaking through a translator, said his main problem accessing services is agencies are overcrowded and that there are "too many people for one case manager."
Perry Lang, executive director of the Black Coalition on AIDS, said he welcomes the city's reviewing how and what it funds in terms of AIDS care and HIV prevention, especially if it means the slices of the funding pie distributed to agencies can be increased.
"Programs need to be fully funded. I get angry and saddened, whether it is a CDC or city funded program, when we ask for $200,000 to completely address an issue but we get $100,000 and are expected to do the same amount of work with half the money," said Lang. "We have people wearing more than one hat, which means they are here all the time but they have to take one hat off and put another on, that is confusing. It is a lot to ask of someone. I think somehow agencies in this city have got to figure out a way to stand up and say 'No more. We got to fix this.' The pot is shrinking so everyone is hurting."
He also said he hopes the discussions look at where the AIDS epidemic will be in the next five years. While white, gay men account for the majority of HIV cases, the disease is making inroads into minority populations.
"The burden of the disease, new cases, is disproportionately affecting minority communities. They don't get a proportionate share of the dollars. That is why it is important to think about the disease five years out. We have to follow the disease," said Lang. "Prevention for women is a critical issue at this juncture but if you look at the numbers in San Francisco they wouldn't justify spending money on it."
Instead of turning to the city for funding, Lang submitted an application to the Academy of Friends to fund a new Sistahs Alive program for HIV-positive women. It began May 27, and Lang is looking for additional funding to launch a group for negative women. When it comes to thinking about AIDS, Lang said his agency, as well as others, must broaden its focus to also looking at treating other diseases.
"In the black community we need to look at AIDS in the context of other health issues such as stroke, diabetes, and blood pressure. They can become the killer or loss of a productive life. We are desperately trying to tap into those funding streams," he said.
In charge of a relatively small agency, with a budget of $2 million, Lang said it has always been important for BCA to build bridges and find common goals with other, larger agencies. More recently, the agency has teamed up with 15 churches throughout town to increase its reach into the city's African American community.
"We have a lot of coalitions and collaborations we are in. We are not talking about merging but deep collaborations," said Lang.
Supportive of the concept of merging agencies, Lang does have one caveat.
"The rub comes in making sure agencies that come out of it are culturally competent," he said.