Primary Care and HIV/AIDS: Building Capacity

Since the AIDS epidemic emerged more than 25 years ago, providers of all kinds of services have adapted their programs in the quest to meet the need for services among people living with HIV/AIDS (PLWHA). As treatments improved, providers increased their focus on primary care, which has become the single most critical component of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Since the CARE Act was enacted in 1990, CARE Act-funded providers have been extremely successful in constructing culturally competent, community-based primary care programs that have resulted in improved health and have dramatically reduced AIDS mortality.

In light of the increasing prevalence of HIV/AIDS, the importance of primary care services like those already being offered by many providers cannot be overstated. Although today's treatments are not a cure, high-quality primary care can turn AIDS into a chronic illness for people with access to highly active antiretroviral therapy (HAART), allowing them to lead long and productive lives.

Because the number of PLWHA is growing, some communities are experiencing the need to increase the availability of culturally competent primary care services. This issue of HRSA CAREAction is therefore dedicated to the topic of building capacity for primary care services.

Expanding Services to Meet Growing Needs

Founded as a storefront clinic in New Haven, Connecticut, in 1971, the Fair Haven Community Health Center (FHCHC), like so many agencies, never thought it would have to adapt to respond to HIV/AIDS.

"Twenty years ago, we thought [HIV] was a nonissue for us," says Katrina Clark, the center's executive director. "We saw very few patients with the disease, and we worked to provide case management to them [to supplement the primary care they were receiving] with no additional resources."

Much has changed in those 20 years. Today, FHCHC operates four satellite clinics. Of its 10,000 clients, more than 1 percent are living with HIV/AIDS, and the need keeps growing. The number of HIV-positive patients at FHCHC has doubled in the past 4 years. Seventy percent of the clinic's clients are Latino, 15 percent are African American, and another 15 percent are White.

Although FHCHC still had not created an HIV primary care clinic, by 1995 it was receiving Title I funding to provide onsite case management services to their growing HIV-positive client base. The center also provided CARE Act services to approximately 30 clients through a subcontract with the nearby Hill Health Center. But agency staff recognized that they had to do more.

People within the organization had been discussing the need for a more comprehensive and cohesive HIV program. Even though creating a comprehensive HIV primary care program fit the agency's mission, the discussions continued for about 3 years, an unnecessarily long period, in retrospect. Why the delay? The center was not aware of available funding sources. Specifically, FHCHC did not realize that it was eligible to apply for funding to support its primary care program under Title III of the CARE Act.

This misconception was corrected after center staff talked to officials at the Health Resources and Services Administration (HRSA's) HIV/AIDS Bureau (HAB). Soon thereafter, FHCHC applied for and was awarded its first CARE Act Title III Early Intervention Services grant.

For PLWHA, FHCHC today does not look much like the organization that, 20 years ago, thought HIV could be handled within its existing structure. Drawing on input from its clients, the center has created a dynamic model that uses care teams to address patient needs in a comprehensive fashion. FHCHC now provides the full spectrum of HIV care: from prevention to counseling and testing to care and treatment. It is an approach that serves the center's clients well.

"One of the advantages for our HIV-positive patients," says Magalys Perez, HIV coordinator for FHCHC, "is that we are a primary care institution that includes clinicians, labs, and social services. And we can tap into other resources here at Fair Haven and treat the whole person."

The FHCHC story is one of an organization that searched for the means with which to meet the demand for HIV primary care, found that means, and then grew over time. Today, the center's co-located service model is supported by funding from CARE Act Titles I, III, and IV and from other Federal, State, and local sources. The HIV clinical care team now comprises 11 staff members, including an infectious disease specialist, adherence specialist, RN, psychiatrist, nutritionist, and prevention outreach/educator along with case managers. To reduce some of the cultural and linguistic barriers to care, the team includes bilingual and multicultural staff.

The center's HIV/AIDS program has grown, but like any program, it has had its challenges—and it has faced them head on.

Lessons From the Fair Haven Community Health Center Explore all avenues of funding—don’t assume you are ineligible until you talk to the people who really know. For FHCHC, a funding solution was found in Title III of the CARE Act. The funding solution for providing primary care services at your organization may lie inside or outside the CARE Act—or both. Stay flexible and creative to meet unexpected challenges. The question is not whether you will face challenges. It is whether you can create an organization that is flexible enough and creative enough to be successful in today’s environment. Communication—among staff, patients, and funders—is key to program success, and it has to be more than informal chats around the water cooler. Organizations need to build opportunities for communicating into their framework for providing services. Otherwise, communication is left to chance.

According to Clark, "One of the greatest challenges of any HIV primary care program, either new or existing, is staying flexible and creative." Clark warns against getting bogged down by challenges and urges organizations to deal with adversity through creative problem solving. For example, FHCHC's HIV clinic dealt with high staff turnover in its early days by developing innovative ways to use part-time staff. When the full-time nurse practitioner and the full-time internist left the program, the center expanded the role of part-time clinical staff and shifted resources to include an infectious disease specialist three times per week.

In addition to flexibility and creativity, Clark and Perez credit the clinic's communication as one of the secrets to the program's success. Perez states, "Within our organization, we have structured communication into the program at various levels and among the clinical team members. It's all for the good of the patient." For example, the weekly staff meetings are used as opportunities to discuss and review each client, his or her needs, and the actions that must be taken in response. "Communication between everyone is what makes it all work," Perez says.

Culturally Competent Support, Culturally Competent Care

New York City's Chinatown is home to people from all over Asia and the Pacific Rim. The name of the neighborhood is a bit of a misnomer because it obscures the diversity of the people who live and work there. As a group, the people of Chinatown and New York's other Asian and Pacific Islander (A/PI) neighborhoods originate from more than 49 distinct ethnic groups and speak more than 100 languages and dialects.

The Asian and Pacific Islander Coalition on HIV/AIDS (APICHA) was founded in 1989 to serve these populations. APICHA's mission is to promote the health and well-being of A/PIs in the New York City area, particularly those who are at high risk for or are living with HIV disease. Until just a few years ago, the agency's activities focused on raising awareness about HIV, disseminating HIV prevention messages, and providing HIV counseling and testing to New York City's A/PI population. But APICHA did not initially plan to provide primary medical care.

Like many organizations serving people living with or at risk for HIV disease, APICHA's array of services has changed with the epidemic. Using funding from CARE Act Titles I and II as well as from State and local sources, the agency now provides essential services such as case management, legal advocacy, support groups, and peer advocacy. In addition, the agency maintains an HIV prevention and education program, which it couples with a robust testing program funded by New York State and the Centers for Disease Control and Prevention.

Most of APICHA's clients are monolingual or have poor English-language skills. Whether HIV positive or negative, they need culturally and linguistically appropriate supportive services. The lack of such services is a major barrier to many A/PIs trying to navigate the complex health care and social services delivery systems of New York City. The agency's participation in a CARE Act Special Projects of National Significance (SPNS) demonstration project that evaluated the effectiveness of bilingual culturally competent case management spurred it to tackle primary care.

"Through that project," explains Therese Rodriguez, APICHA's executive director, "we began to see the value of providing a one-stop shopping model of client services." Dealing with multiple agencies is a difficult task for any PLWHA, Rodriguez observes, and it is made more difficult by cultural and linguistic barriers. It is a problem that Rodriguez and her staff have seen occur over and over.

Before incorporating primary care into its own list of services, APICHA first attempted to establish a satellite clinic in one of the local hospitals. APICHA staff, however, found the chasm between the organizational culture of the hospital and APICHA's own community-based orientation too great to sustain an effective collaboration. At the heart of the issue were the problems A/PIs experienced in large hospital settings, including the need for physicians familiar with A/PI cultures and languages.

"Our clients had difficulty navigating the hospital system for their care," says David Kim, medical director at APICHA, "and the result was that many of them discontinued medical care in that setting." When clients came back to APICHA to receive case management and other services, they often described what they encountered in the hospital system. APICHA listened—and created a primary care program in response.

Today, APICHA's Title III-funded primary care program has completed its second year of operation. The program is founded on three principles: cultural and linguistic competence, a holistic approach, and one-stop shopping. The clinical staff includes an HIV/AIDS physician specialist, licensed practical nurse, phlebotomist, consulting psychiatrist, and clinic administrator. Clients have access to staff who collectively speak eight different A/PI languages; share an understanding of the economic, political, and legal issues that A/PIs experience; and are able to communicate with clients in a meaningful way.

But APICHA's culturally competent, linguistically appropriate primary care clinic did not "just happen." APICHA underwent a 3-year planning process that brought stakeholders together to craft a plan.

Yumiko Fukuda, APICHA's director of programs, describes the importance of that process. "Starting a primary care program," she says, "is something that affects everyone, so the buy-in of staff, board, funders, and the community is very important."

Kim agrees: "Taking the time to understand and involve the community of stakeholders, including the patients, was very valuable." He says, "The only way a provider can be successful is to understand the community and what it wants and what it will support." This includes the proactive involvement of PLWHA—involvement that APICHA does not leave to chance.

"We have HIV-positive clients as part of our Community Advisory Board," Kim explains. "The Board provides critical program and policy input to the agency."

To foster consensus and development of a reality-based plan, APICHA took the following steps:

• APICHA held focus groups and key informant interviews with the community to identify potential program needs and help design the program.
• The organization's case management and support group staff expressed their desire—and that of their clients—for comprehensive care that would allow the existing APICHA components to interact.
• APICHA's board of directors agreed to undertake a massive capital campaign to finance the development and construction of a facility that could be licensed to provide primary care.
• When APICHA was ready to move forward, the board hired an architect who was both experienced in working with nonprofit organizations and familiar with the State and local regulations regarding licensure of primary care facilities.
• APICHA also worked with a licensure consultant, who helped move the process through the proper channels.

The entire process of preparing the agency to provide primary care services was supported by a Title III planning grant. According to Kim, "Data from the SPNS project revealed gaps caused by our not providing more direct services, including primary care. The planning grant was an opportunity for us to explore various models of primary care and decide what was feasible for both the community and our organization."

Moving from being a provider of support services to becoming a provider of comprehensive HIV services that include primary care required APICHA to change its approach. "Everything the other programs do now needs to link to providing access to primary care," says Rodriguez. "Information about accessing primary care has to be integrated into all our work, so that staff work to reduce barriers and market primary care as the ultimate goal." Underscoring APICHA's transformation to a primary care-centered agency, she adds, "We all become outreach workers for primary care."

Lessons From APICHA Talk to stakeholders, and design the program to meet their needs. Businesses cannot design services and products that respond to unmet needs unless they talk to their customers, nor can organizations designing a primary care program. Listen—and then listen some more. Take time to thoroughly plan the program, bringing in outside consultants if necessary. Providing primary care is a complex endeavor that will change your entire organization. Don't try to "wing it," and don't forget to involve everyone who has a stake in your activities. Pay attention to cultural factors in planning partnerships. Your cultural competency cannot compensate for the lack of it in agencies with which you partner. And if your partners are not culturally competent, many of your clients won't use their services. With a disease like HIV/AIDS, the results can be devastating.

Expanding Services in an Underserved Community

The Tenderloin community of San Francisco covers about 60 square blocks. It is the city's most socially and economically depressed neighborhood. Twenty-four percent of its residents are homeless, the highest concentration in the city. In 2002, the Tenderloin surpassed the Castro as the epicenter of the city's AIDS epidemic. But HIV/AIDS came to the community long before then.

In 1988, an organization called the Tenderloin AIDS Network (TAN) was awarded funds from a community foundation to assess the need for HIV services in the Tenderloin. Results indicated a significant need for neighborhood-based HIV prevention along with social and medical services that addressed the needs of the community's injection drug users and transgender residents, many of whom were homeless people of color. Not many organizations wanted to serve these populations. As Sarah Marshall, former board chair, put it in a recent issue of the agency's newsletter, "We realize that if [we don't] provide a service to our client population, those people aren't going to get a service."

By 1990, TAN had become the Tenderloin AIDS Resource Center (TARC), and it set out to address many of the community's needs through peer-based case management. Then, as now, the organization was responsive to the needs of the community. And then, as now, TARC realized that it couldn't go it alone.

"In the early days—and even now—we rely on a large number of ongoing partnerships to make sure services are meeting the needs of our clients," says TARC executive director Tracey Brown. "We work with a local Health Care for the Homeless provider, a hospital clinic, a local adult day health program, and several other AIDS service organizations."

Another important partner has been the City of San Francisco. Brown explains, "In 1997, we still were not providing primary care. The city wanted to study its main centers of care for the indigent. As part of that study, they wanted to look at where the city's more vulnerable populations gathered and evaluate whether there was a way to bring primary care to them, rather than use the old model of creating a program and asking underserved individuals to go to it."

This was an important step for populations living in the Tenderloin. "Many in this community are reluctant to go outside of its boundaries,” Brown says. "A clinic may be only 10 blocks outside the neighborhood, but part of the culture is not to leave the area."

Brown observes that it was no accident that the city's study occurred shortly after the 1996 reauthorization of the CARE Act. "There was a lot of emphasis during that time in reaching those not in care." Reflecting that priority, the San Francisco Title I Eligible Metropolitan Area Planning Council prioritized creation of integrated service projects. Integrated services—also known as "co-located services" or "one-stop shopping"—is an approach that facilitates access to and retention in care for underserved populations with multiple service needs.

As a result of the planning council's emphasis on integrated services, Title I funding became available to support development of those services. "This fostered collaboration among organizations who worked together to coordinate care to meet the multiple needs of their target audiences," says Brown.

This collaboration allowed TARC to offer onsite primary care services to its clients for the first time in 1998. The agency partnered with the Tom Wadell Health Center (which receives Federal Health Care for the Homeless Program funding) to come to the center to provide primary care. The City of San Francisco provided funding for making appropriate physical modifications to the service site. When the partnership began, onsite services were available 2 days per week. Now they are available every day—even Saturday and Sunday.

TARC also offers HIV emergency housing assistance and long-term housing; mental health and substance use assessment and treatment; psychosocial support; and other support services, such as nutritional supplementation and peer support. The agency has diversified its funding stream and receives support from CARE Act Titles I, II, and III. TARC served an estimated 1,200 unduplicated clients in 2004, of whom 200 are primary care clients.

"One of the keys to our success is that we go in the direction the client wants to go, and we then work to encourage and engage the client toward primary care," explains Brown. The TARC approach is about meeting the clients where they are. And it is an approach that works.

Lessons From TARC Diversify funding streams. The more diverse your sources of funds are, the more likely you will be able to meet the diverse needs of your clients. Develop partnerships with other organizations. You can't do it all—and other organizations know things that you don't. Likewise, you have much to offer other organizations that want to reach people in your community but can't do it on their own. Bring the program to the clients, rather than the other way around. Many vulnerable individuals will not or cannot travel outside their communities for care. The key to serving these clients is to provide community-based care: If you have a presence in an underserved community, that presence is an asset no outside organization can create.

Developing Primary Care Services: Guiding Principles

The path to adding primary care services to an organization's array of services is different for every entity. It requires creativity, skill, and ingenuity—and eyes wide open to every opportunity to better serve clients. FHCHC, APICHA, and TARC each possess unique strengths and have faced unique barriers and opportunities. But observation of how they were able to add primary care services to their service continuum offers important lessons for agencies considering the creation of primary care programs.

• Agency readiness. Each agency engaged in considerable preparation and discussion at many levels of the organization about its ability to provide HIV primary care. All three reexamined their organizational missions and goals with staff, board, and the community. The addition of primary care services reflected the agencies' core purposes and responded to clearly defined unmet needs.
• Needs assessment. Each agency evaluated community needs by involving potential clients in the discussion and asking about gaps in services, barriers to primary care, and what clients wanted in a primary care provider. Through focus groups, surveys, key informant interviews, and community forums, each agency involved PLWHA in the design of the primary care program. Each agency also built the HIV primary care program using respect and trust already established in the community. This important asset not only helped the organizations during the needs assessment but also was an important key to the success of attracting patients once the clinics opened.
• Development of a multidisciplinary service plan. PLWHA face complex medical, psychological, and social challenges. A strong primary care program helps PLWHA navigate those issues by coordinating primary care with appropriate supportive interventions and timely referrals to other agencies when necessary. The three programs use a multidisciplinary approach involving staff with various talents and skills and programs designed to enhance and support primary care.
• Detailed planning. Organizations invested significant resources in planning—and they involved the community, staff, boards of directors and, perhaps most important, PLWHA. Because the expansion activities were so carefully and thoroughly planned, the agencies could readily respond to unexpected problems.
• Partnership development. None of the three agencies described in this article tried to go it alone. They worked with other local programs to address some of the service needs of dually and triply diagnosed clients. Past partnerships and relationships with other agencies were often crucial to the success of the new endeavor.
• Exploration of funding options. None of the programs "chased funding"—that is, developed a program solely on the basis of a request for proposals. They allowed the community to dictate the need, and then they searched (often for a considerable amount of time) for funding opportunities that fit the program being developed.

Conclusion

The need for new primary care programs for PLWHA is clear. Several HRSA initiatives address this problem by improving primary care program efficiency and outcomes and by expanding access to primary care services.

• In addition to primary care supported through the CARE Act, HRSA provides access to services through federally funded Community and Migrant Health Centers.
• The CARE Act Technical Assistance Contract provides grantees with access to expertise on how to build and manage primary care programs, and the Supporting Networks of HIV Care Initiative provides that same support to subgrantees and providers (see box on page 7).
• Capacity-building and planning grants help prepare providers to offer primary care services.
• Quality assurance activities help ensure that services are of the highest quality.
• The AIDS Education and Training Centers' clinical training activities increase know-how among frontline clinicians.
• The SPNS program continues the search for more effective models of care delivery.

These activities are critical, because strategies for improving access to primary care and expanding primary care programs must enhance the capacity of grantees and providers to deal with growing need in their own communities.

Lack of access to health care is a familiar problem to underserved PLWHA and their families. But it is a problem that can be successfully addressed—and for hundreds of thousands of clients at CARE Act-funded organizations, it has been addressed. How? Through the Federal, State, and local collaboration that is the CARE Act.

 

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HRSA's Supporting Networks of HIV Care Initiative

In 2002, HRSA expanded its support for building primary care programs by launching its Supporting Networks of HIV Care (SNHC) initiative. Funded through the Minority AIDS Initiative, SNHC is a capacity-building initiative to foster the development of new primary care services in minority communities. Although technical assistance was already available to CARE Act grantees through HRSA's technical assistance contract, the HIV/AIDS Bureau wanted to reach out to organizations that do not directly receive CARE Act funds. Thus, CARE Act subgrantees and other small community and faith-based organizations that serve predominantly minority populations may be able to take advantage of SNHC services.

The SNHC initiative provides a variety of in-depth technical assistance services to organizations seeking to build primary care services. The initiative is being implemented through two cooperative agreements, one with the National Minority AIDS Council (NMAC), the SNHC resource coordinator, and the other with the Communities Advocating Emergency AIDS Relief (CAEAR) Foundation, the SNHC assistance coordinator.

SNHC and NMAC

NMAC conducts SNHC Regional Intensive Trainings approximately four times per year. These 2-1/2-day training sessions provide intensive instruction on issues critical to primary care program development as well as such topics as organizational readiness, planning, quality of care, and creating linkages with other organizations in the community. The curriculum also explores aspects of program management and evaluation.

NMAC also maintains a library of publications and resources that are available to organizations enrolled in the SNHC program.

SNHC and the CAEAR Foundation

As the SNHC assistance coordinator, the CAEAR Foundation provides onsite technical assistance to community- and faith-based organizations. It also offers community-level training sessions that address unique challenges to creating or enhancing primary care programs for people of color living with HIV/AIDS. Onsite technical assistance helps organizations address the specific barriers and challenges related to providing primary care services to underserved communities. The content of the onsite technical assistance intervention is tailored to each provider and is determined only after an in-depth analysis and needs assessment.

The CAEAR Foundation community-level interventions, referred to as a Learning Community (LC), are similar to those provided at the organizational level in that they are designed to address the challenges and needs specific to a particular community. The 2-day sessions serve to increase communitywide capacity to meet the primary care needs of underserved communities. A second goal of the LC is to assist in the development of formal linkages between the LC participating organizations and other community organizations.

For more information on NMAC’s SNHC services, contact the program coordinator, Melanie Graham, at 202.483.6622, ext. 307, or mgraham@nmac.org. Information about NMAC’s SNHC activities is also available at www.nmac.org.

For more information on the CAEAR Foundation’s SNHC services, contact Ronald Johnson at 800.861.5640 or ronald@caear.org. Information about the CAEAR Foundation’s SNHC services is also available at www.hivta.org. The CAEAR Foundation can be accessed on the Web at www.caear.org.

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For More Information

To obtain information on Medicare plan options and enrollment materials: www.medicare.gov. Toll free: 800-MEDICARE. (800-633-4227) TTY: 877-486-2048.

To locate Social Security Offices: www.socialsecurity.gov/locator. Toll-free: 800-772-1213. TTY: 800-325-0778.

To find the nearest Medicaid office, contact the State Medicaid agency.

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