Living with HIV: Donna Jean Navarro, Oklahoma City, OK

Photographs for this report were generously provided by The Faces of AIDS, two projects that chronicle the lives of people living with HIV disease in 11 Midwestern States and in New York City.

Part I. Successes and Challenges

Few new CARE Act financial resources
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Growing HIV/AIDS prevalence
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Rising costs of HEALTH CARE AND breakthrough drugs
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Growing challenges IN THE FACE OF SUCCESS

The Ryan White CARE Act

The RYAN WHITE COMPREHENSIVE AIDS RESOURCES EMERGENCY (CARE) Act authorizes HIV/AIDS services for people with nowhere else to turn. First signed into law in 1990, and reauthorized in 1996 and again in 2000, the legislation created a set of diverse programs, described in PART IV of this report.

The focus of the CARE Act is to provide primary care, treatmenT, and essential support services to people living with HIV/AIDS. The services are delivered by organizations across the country THAT receive CARE Act funds—primarily through grants. Each year, they reach about 533,000 underserved people, more than half of all those estimated to be living with HIV/AIDS in the United States.

Thousands of diverse organizations and individuals collaborate to implement the Nation’s CARE Act programs. Their ability to adapt to an environment of growing pressure will do much to determine whether the country is able to serve underinsured and underserved people living with HIV disease who need care in the future.

Enhancements in treatment, like once-daily dosing, are going to break down barriers to extremely demanding—and sometimes debilitating—antiretroviral regimens. Innovations like rapid testing, increased CARE Act emphasis on outreach to the 400,000 to 500,000 HIV-positive people not in care, and the Centers for Disease Control and Prevention (CDC)Advancing HIV Prevention: New Strategies for a Changing Epidemic initiative are going to successfully reach people living with HIV disease. Unless the economic profile of communities disproportionately affected by HIV disease changes dramatically—and there is no indication that it will—many people reached are not going to have private health insurance or personal resources to pay for care. Many will be ineligible for Medicaid. Who is going to take care of them?

This is not a new question—and in many ways it is the very question that led to the CARE Act in the first place. But needs today are in many ways very different from in 1990, when the CARE Act was first signed into law. We now have antiretroviral therapy. Hospital care is required for fewer and fewer people. But as inpatient costs continue to fall, outpatient costs continue to rise—and rise dramatically. And with more people living with HIV disease in the United States than ever before, and with few new public resources available to care for them, many CARE Act–funded providers and programs face a set of real-world circumstances that pose serious challenges to people seeking care—and for people seeking to provide it.

Yet the glass is half full. The CARE Act community—and the entire HIV prevention and care system in the United States—has never had more to offer. And we have the capacity to adapt to new realities. We are able to apply rigorous principles to managing resources. We can ensure that we operate as efficiently and productively as possible. And we can redouble our commitment to investing resources where they can do the most good.

Connecting with populations in underserved communities

AIDS incidence and mortality have fallen among underinsured people because CARE Act–funded providers are very good at reaching populations historically underserved by the larger health care system, such as racial and ethnic minorities, who constituted about 65 percent of CARE Act clients in 2002.

CARE Act–funded providers are also very good at responding to the changing demographics of AIDS. For example, about one-third of all clients are now women. Almost one-third are 45 or older. And providers are redoubling efforts to reach young people, a population that is among the most underserved in America and that continues to experience extremely high HIV incidence in some communities.

Like most CARE Act successes, client reflectiveness of the epidemic hasn’t happened because of the actions of a single group or single program. It has happened because of locally conducted, science-based needs assessments. It has happened because of innovative outreach programs. And, critically, it has happened because of the work of organizations such as communities of faith, public health departments, social services organizations, and substance abuse treatment centers.

The CARE Act community knows organizations like these as “key points of entry” into the medical system. They provide critical services to populations that are often both hard to reach and at risk for HIV disease. By building linkages with those organizations, CARE Act providers reach affected populations, sometimes long before the changing demographics of the epidemic are reflected in public data.

Reaching those most in need

The “E” in CARE Act stands for “emergency.” It’s the word on which the entire CARE Act initiative pivots.

CARE Act clients come from big cities and small towns, suburban communities and the rural heartland. And wherever they live, they face a common problem: They simply cannot afford essential HIV/AIDS care and support services.

When the epidemic emerged, communities were not prepared for a disease like AIDS. No one had ever imagined a disease like it—and there were simply no resources to respond to the emergency created by debilitating illness and its economic results: loss of employment, loss of health insurance, and loss of the capacity to meet even basic subsistence needs like food and housing.

The scenario is quite different today, but the word “emergency” still applies. With treatment, many people are able to work and support themselves and their families. But infection rates have climbed among people who were at disproportionate risk for poverty before becoming infected. It is a fact reflected in the demographics of CARE Act clients. In 2002

• at least one of every two lived below the Federal Poverty Level
• fewer than 1 in 10 had any private health insurance; and
• only 27.9 percent were enrolled in Medicaid.

CARE Act program success in ensuring that breakthroughs in treatment reach the underserved is due in large part to the capacity to reach people whom many providers in America’s health care system do not serve.

Jackie Thompson, Chicago, IL

CARE Act clients

CARE Act clients are “underserved” and “un/underinsured.” (see charts, page 17.) but those words belie the resiliency and courage of people who often overcome incredible odds to counter the physical and social effects of HIV/AIDS.

CARE Act clients are involved in their own care. Many play active roles in service planning at the State, community, and provider levels. Many are leaders in research, advocacy, and service delivery. And many, like those whose pictures fill the pages of this report, have much to teach us about HIV/AIDS.

Like Mary Swinton from Wichita, Kansas, who says, “the same thing can happen to any other woman in my church.”

Or like Dave Bergquist, who lives in Sturgeon Lake, Minnesota. “Around here,” he says, “they think it can’t exist because there are no gay people. That makes them ill-informed on two counts. I know three people within 10 miles of me who have HIV. One is straight, one is a little girl, and one is a gay man.”

Expanding service capacity in underserved communities

CARE Act providers increasingly reflect the underserved communities they exist to serve. In more than 1 in 3 CARE Act–
funded providers, a majority of professional staff members are racial and ethnic minorities.

Through capacity building and planning grants, the CARE Act expands service delivery capacity in historically underserved, often minority communities. In 2002, for example, 60 planning grants and 59 capacity-building grants helped providers prepare to provide services where, in many cases, no other providers existed.
We can’t address AIDS without health care. And we can’t provide health care without providers in communities that need it. Continuing to invest service resources in under-resourced communities is a must if we are to reach those not in care.

Doing more with less - and always making the CARE Act the payer of last resort

Doing more with less is a familiar concept to CARE Act–funded organizations. Most are either public agencies or nonprofits well accustomed to fluctuations in charitable giving and public and private funding. They understand that the Nation is facing new challenges. And they realize that they must work harder than ever to make sure that the CARE Act is always the payer of last resort.

Individuals outside the CARE Act community sometimes believe that CARE Act programs are entitlements like Social Security and Medicare. Unlike those programs, however, which guarantee certain benefits to individuals who meet eligibility requirements, CARE Act funding is discretionary.

This is a critical distinction, and it means that resources are not unlimited. To ensure that CARE Act resources are there when needed, it is essential that they be used only to serve people who have nowhere else to turn.

Antonio Hernandez, New York, NY (deceased)

Vigilance in a time of distraction

Responding to AIDS is about more than responding to an infectious disease. It is about dealing with the perception that antiretroviral therapy has stopped AIDS. And it is about dealing with poor access to health information and health care—both of which have fueled the epidemic since its inception.
The CARE Act community must remain vigilant in its efforts to stem the effects of HIV/AIDS at a time when the epidemic seems to take up a smaller place in the American consciousness. Findings from a 1987 Gallup poll indicated that 68 percent of Americans believed HIV/AIDS was the nation’s moSt urgent health problem, a number that had fallen to just 17 percent in 2002, according to a follow-up study. The number of news stories on domestic AIDS has also declined over the period, and organizations relying on volunteers and private donations report drops in giving.1

Prioritizing delivery of primary care

More than two-thirds of all CARE Act funds were used for primary care and treatment in 2002. Almost 3 times more clients used primary care than used the most often used support service. (See charts, pages 14, 20, and 21.) Access to some support services is associated with increased utilization of primary care, and those services must continue to be funded where essential. But primary care and treatment dollars harness the power of today’s science from the laboratory into the lives of people the CARE Act was created to serve. Without these funds, reductions in perinatal transmission and AIDS mortality could never have been achieved. Nor could we address the health issues faced by an aging HIV- positive population.

Continuing prioritization of primary care is about more than allocating as many CARE Act resources as possible to providing care and treatment. With growing treatment costs, the aging of the HIV-positive population, and growing HIV prevalence, CARE Act providers can never meet total need for primary care services—and they were never intended to.

Building a growing coalition

CARE Act providers use case managers, counselors, and advocates to link HIV-positive individuals to non–CARE Act programs for essential services. For example, eligible individuals are referred to Medicaid, which frees CARE Act resources to assist those who are not Medicaid eligible. (27.9 percent of clients were enrolled in Medicaid at the end of 2002.) Providers also link clients to charitable and publicly supported organizations, such as departments of health and federally funded community and migrant health centers.

Yet, too often, CARE Act–funded providers are called on to deliver care that could be—and should be—provided by others in the community. Only by building a broader coalition of organizations that address HIV/AIDS in local communities can the Nation reach everyone not in care and ensure the availability of CARE Act–funded services in cases where there are no other options.

Identifying existing infections and preventing new ones through care

True primary care includes a disease prevention component. Lack of access to such care represents a lost opportunity to prevent all kinds of diseases and adverse conditions. And it is one reason that millions of people living with a range of diseases—and hundreds of thousands of HIV-positive individuals—have never been diagnosed. By directing as many CARE Act and non–CARE Act resources as possible to primary care, the United States can reduce the number of undiagnosed HIV infections, reduce the number of HIV-positive people not in care, and reduce new HIV infections.

People unaware and unsuspecting of their serostatus are less likely to incorporate prevention behaviors into their lifestyles than are those who have been diagnosed and are in care. Innovative programs and new tools like rapid testing offer real potential for reaching even larger numbers of people previously unaware of their serostatus. Linking newly diagnosed people with care and then helping them adopt preventive behaviors represent major opportunities for stemming the tide of AIDS in the United States.

Kenny Bell, St. Louis, MO

Responding To An International Crisis

The Nation’s commitment to addressing AIDS in resource-constrained settings is reflected in the President’s Emergency Plan for AIDS Relief. through this ambitious plan, the United States is providing much-needed support in the 15 African, Caribbean, and southeast asian nations most affected by hiv/aids.
the health resources and services administration (HRSA) is responsible for implementing the CARE Act, the largest U.S. program specifically for people living with HIV/AIDS. It also is playing a crucial role in implementing the President’s Emergency Plan. The HRSA approach has four components: care and treatment; education, training, and human-capacity building; technical assistance; and fostering of partnerships. Through activities in each area, the agency brings expertise and assistance to settings that face enormous challenges.

Expanding access to treatments at the best price

The CARE Act community scored a critical victory in 2003 by ensuring access to the drug Norvir at a price almost four times lower than on the open market. Agreements like this one, and cost-cutting mechanisms at State AIDS Drug Assistance Programs (ADAPs) (see page 36), and discount programs provide access to medications for many who could not afford even one month of antiretroviral therapy. Providing access to appropriate treatment is the whole point of patient-centered primary care. CARE Act grantees must continue to work to get the best possible price for medications.

Being accountable

In recent years the CARE Act community has made great strides in focusing on quantifiable, measurable outcomes data. All programs have strong evaluation components and are working to increase their capacity to measure success.

CARE Act providers exist to serve clients, but they could not achieve their mission without Federal support. By focusing on core primary care and essential support services, and by providing clear, concise outcomes data, providers in the CARE Act community become better stewards of the resources entrusted to them every year. And by becoming better stewards, CARE Act providers increase their productivity and their ability to reach those still not receiving appropriate care.

Rising health care costs, limited resources, and many other problems facing the CARE Act community are not new. But they must be approached with a renewed sense of mission. The health and quality of life of hundreds of thousands of people living with HIV disease depend on how well today’s challenges are met.