The Ryan White HIV/AIDS Program: A Firm Foundation, a Shared Future
Proposals come from every corner of the country about how to fix a health care system that leaves millions of people without care. It remains far from clear how America will resolve its inequities in access to health care. What is far more clear are the issues that the HIV/AIDS services community must face as we near the end of the third decade of AIDS in the United States. Fortunately, America’s response to AIDS thus far offers a firm foundation for addressing the epidemic in the future.
The Ryan White HIV/AIDS Program is improving the lives of people in ways that were unfathomable to the first patients and clinicians who encountered the “strange new disease” in 1980. Even the developers of the first HRSA AIDS programs in 1985 and the broad coalition associated with passage of the Ryan White CARE Act in 1990 must find the scope and reach of today’s program more than most could have hoped for. To understand this amazing trajectory, we need look no further than the commitment of the Ryan White community to facing its challenges together.
Networks Create a United Front
Because of the past 18 years of the Ryan White HIV/AIDS Program—and 23 years of interventions at the HRSA level—hundreds of thousands of people have experienced the power of health care, many for the first time. Networks of individuals and providers have addressed the physiological concerns and other equally important determinants of good health. The results are enormously positive and are measured in ways that go beyond reduced viral loads and higher CD4+ counts. The results are also immeasurable, because improving one’s health is often the first step in improving other issues.
The way in which America’s health care debate is resolved will have an incalculable impact on the health of people living with HIV/AIDS. But as we await that resolution, the HIV/AIDS services community is already at work to address tomorrow’s challenges today.
Success Brings New Challenges: The Graying of AIDS
It is a problem we are glad to see: HIV-positive people are living longer and more productive lives. With age, however, they are increasingly facing chronic conditions such as hypertension, high cholesterol, and arthritis. These conditions exist alongside the long-term effects of HIV/AIDS treatment, about which we still know little, and the comorbidities that have long been common to HIV/AIDS. This development raises many questions, including these:
- Will people living into middle and old age with chronic HIV infection need an infectious disease doctor, a primary care doctor, or both?
- When patients need more time with caregivers, but budgets pressure caregivers to take less time, how will we ensure quality, comprehensive care to people with multiple diagnoses?
We must wrestle with these questions now, because the graying of the HIV-positive population is not happening tomorrow. It’s happening today.
Staying Connected: Retaining Patients in Care
Enrollment in care does not equal retention in care—not by a long shot. And staying in care is a chronic problem for many people living with HIV/AIDS.
In 2006, HRSA developed a tool (see below) to clarify the points along the engagement-in-care continuum. Today, the agency is heavily absorbed in improving its understanding of how to help patients stay on the far right of this continuum because, quite simply, clients in care do better. For example, HRSA and the Centers for Disease Control and Prevention (CDC) have funded six sites to assess how certain interventions affect people’s ability to stay in care. The goal of these studies is to find solutions to a chronic issue in health care.
Indeed, retention in care is not an HIV/AIDS problem. It is a health care
problem. We must collaborate with providers across the health services spectrum
to solve the problem of people falling out of care—and falling into poorer
health.
| Reprinted from Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB). Outreach: engaging people in HIV care. August 2006 | |
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To Know or Not to Know:
Early Diagnoses Increase Demand for Care
The intent of the new HIV testing guidelines for medical care settings, “Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health Care Settings,” is to identify people living with HIV/AIDS as early in the course of disease as possible and to enroll them into care.19 If the guidelines are successful, demand for services will increase.
It has been estimated that of the 1.04 to 1.19 million people living with HIV disease in the United States, between 24 and 27 percent don’t know their serostatus (between 249,360 and 319,950 people).20 It is not likely that everyone would enter care at the same time and in a single moment overwhelm HIV/AIDS services providers. Moreover, many of those who do enter care will elect to delay initiation of treatment.
However, many others—37,852 in 2006 alone—don’t know their serostatus until they are diagnosed with AIDS.21 On top of that, nearly 2 out of 5 patients (39 percent) newly diagnosed with HIV progress to an AIDS diagnosis within a year’s time.22 Clearly, they need treatment for their HIV infection and related AIDS-defining conditions. It is likely that they also need general primary care and services to help them overcome the barriers that led to a late diagnosis of HIV disease.23
What is our capacity to handle a burgeoning patient census? How can we help providers and community-based organizations, many of whom are already reporting significant increases in client load, meet the need for growing demand? These are difficult questions. And there are no easy answers.
Is Anybody There? The Manpower Shortage
Decades ago, the U.S. Department
of Health and Human Services defined regions where there are not enough clinicians
to meet the primary care needs of the local community as “Health Professional
Shortage Areas” (HPSAs). It is not lost on many people working in HIV/AIDS
that the epidemic, like many diseases, has hit hardest in communities where
there simply isn’t enough health care to go around.
Where HIV/AIDS is concerned, the shortage of manpower in particular communities is compounded by other, more generalized developments: the aging of the first generation of HIV/AIDS services providers; a change in the role of the caregiver from palliation to treatment of a chronic disease; and, significantly, the burnout-causing sense that doing all that the patient needs and requires is simply impossible, given restrictions in time and money.
HRSA has done much to address the manpower shortage issue. The AIDS Education and Training Centers (AETCs) Program is using innovative approaches such as mapping to identify where the most significant shortages are and then taking training and engagement to those areas. Historically, the agency has administered programs that placed health professionals in HPSAs. Through its newsletter, HRSA CAREAction, HRSA has brought attention to the issue of burnout and has also helped identify tools that help forestall it (see HRSA CAREAction March 2007).
But the looming manpower shortage is a complex problem caused by forces both internal and external to the AIDS epidemic. It will require a concentrated and synchronized response to deal with it.
Medicaid and the Deficit Reduction Act
Medicaid is the largest public health care program in the Nation and the largest payor of care for people living with HIV/AIDS by far. The program provides a full range of services to eligible persons, including case management, prevention services, hospice care, and prescription HIV drugs.24 At $6.3 billion, Medicaid accounted for 51 percent of all Federal HIV/AIDS spending in FY 2006, and more than 200,000 people living with HIV/AIDS are enrolled in the program.25
In total, approximately 59 million people are enrolled in Medicaid, making the program necessarily complex. In February 2006, the Deficit Reduction Act of 2005 was signed, providing new regulations and cost-saving measures. Because these changes could potentially impede access to health care for some, it is incumbent on Ryan White HIV/AIDS Program providers to help clients overcome any barriers that arise, to ensure that their health is not negatively affected.26
In fact, the Congressional Budget Office estimates that 13 million Medicaid
recipients will face new costs, such as increased beneficiary copayments,
and that 65,000 current Medicaid enrollees—60 percent of them children—will
lose their coverage entirely by 2015.27 This shift comes at a time when a
graying HIV-positive population’s needs for long-term health care are only
increasing.
Fiscal Viability: Open for Business, or Closed Doors?
It is not the intent of the Ryan White HIV/AIDS Program legislation to support the financial viability of providers and grantees. The legislation, after all, funds services, not organizations. Yet, the legislative intent to serve as the payor of last resort for the underserved can’t be realized unless providers are financially healthy.
If connectedness is the theme of HIV/AIDS service delivery in America, it is nowhere more apparent than between HRSA, which implements the legislation, and the grantees and providers who deliver mandated services. Neither can fulfill its role without the other.
Although the Ryan White HIV/AIDS Program does not directly address the financial viability of grantees and providers, its activities can have the effect of strengthening an organization’s financial position. For example, the AETCs and other HRSA-provided technical assistance help organizations operate more efficiently. The Special Projects of National Significance (SPNS) Program identifies approaches to care that offer the greatest return on programmatic investment. And tools like CAREWare and, more generally, the Federal emphasis on evaluation and data help organizations capture the results-oriented information that funders want to see.
These tools alone, however, cannot ensure the financial viability of organizations over time. To achieve that goal, we return once again to the theme of connectedness. Because it is by building a broad coalition of partners, each doing its part to respond to HIV/AIDS, that we share the financial burden—and strengthen the safety net for people who depend on it.
Client-Level Data: The Quest to Know More
The quest to know more is not new to the field of HIV/AIDS or, for that matter, the field of medicine. Science is always in search of more effective treatments, diagnostic tools, and health care practices. In today’s health care field, the quest for continued learning increasingly extends to patients themselves. In recent decades, the power of computers and technology has made the search for knowledge more far-reaching and fruitful than could have been imagined before the Information Age. But the tools of this age are not distributed equally among all providers, which is why HRSA is heavily engaged in ensuring that HIV/AIDS program grantees and providers who may need assistance related to client-level data receive it.
With the reauthorization of 2006, the SPNS Program is mandated to fund special programs that expand capacity to develop client information systems and report client-level data. In 2008, 17 Part A and B grantees will receive funds through this program; Parts C and D are slated for funding in 2009. Over the past year, HRSA has collaborated with grantees and providers to build their client-level data systems. Working together, data elements have been defined and thoroughly vetted among grantees. Also in the spirit of collaboration, technical assistance is available as needed.
In 2008, the process of supporting grantees and providers in their efforts
to gather and use client-level data will continue. Simultaneously, HRSA and
its grantees and providers will be addressing this important question: With
the gold mine of client-level data in place, how can the Ryan White HIV/AIDS
Program maximize the utility of the data to improve client health?
Sunrise, Sunset: Preparing for Reauthorization
It hardly seems possible. Wasn’t 2006 only yesterday? Isn’t the ink on the Ryan White HIV/AIDS Treatment Modernization Act barely dry? Are we really preparing for the 2009 reauthorization hearings?
The implications of changes in the law have been center stage since 2006. The Ryan White community has been collaborating to implement changes in the legislation adopted to reach the neediest first and, more generally, increase access to life-changing care. Because of that collaboration, the implementation of new provisions has been extremely successful.
For most grantees and providers, 2006 wasn’t the first reauthorized AIDS care bill—and everyone hopes that it won’t be the last. The current Ryan White HIV/AIDS Treatment Modernization Act is set to expire on October 1, 2009. HRSA and its partners are already preparing for reauthorization hearings for a new bill. The agency’s responsibilities are enormous. We must provide information that is as complete as possible on the successes—and shortcomings—of our current programs. Even as a new administration takes over in January 2009, we must continue to respond quickly to policy makers’ need for information. And while we are meeting those responsibilities, we must not lose sight of our true purpose: to reach the underserved.
The Power of Connections: Broad Coalition, United Force
The interconnected force of everyone engaged in addressing HIV/AIDS can never be fully defined. Administrators and outreach workers, grantees and project officers, clinicians and case managers, clients and caregivers—all are stitched together like a patchwork quilt, inseparable parts of a whole, indivisible in their work.
We cannot know what the sunset of the current law will mean or the hoped-for rise of a new one will bring, but we do not enter a future full of unknowns. We go forward standing on the shoulders of those who dared to step into the fray before AIDS even had a name. We go forward with the knowledge gained from consumers and providers over almost 3 decades. We go forward knowing that the comprehensive, “wrap-around” services that we provide are, for many, the only thing standing between long life and early death. And we greet the future with the full knowledge that, regardless of the disease, health care is about more than a pill.
The Ryan White HIV/AIDS Program continues to grow and evolve because of the communities that have been built around care and support. Over the years, individuals, families, communities, health care institutions, and advocates have come together around a common goal: keeping people healthy. These communities have understood that people living with HIV/AIDS are deeply connected to friends and family as well as to a network of caregivers, case-workers, health care providers, and advocates, who have, in turn, connected to each other to improve the health care system.
The Ryan White HIV/AIDS Program is a model for the reduction of health care disparities in this country. Past successes have come not only from connections but also from a focus on what is possible. Each innovation began as a “What if?” Each HIV-positive person who benefited from the Ryan White HIV/AIDS Program did so because people connected, came to the table, and pondered the possibilities. In the end, they made each possibility a reality, using their collective power to break barriers that had once seemed insurmountable.
Who would have believed in the early days of the epidemic that years later,
half a million people would be receiving vital health care services and medication?
It has happened through funding and innovation—and the power of connections.
As the projects highlighted in this report have shown, if we all use the
lessons we have learned from one another; if we share and apply them in many
different settings; and if we work together to provide compassionate, respectful
health care for the country’s poor and underserved—regardless of their
ability to pay—then anything is possible.
| *This list of services is intended to be illustrative but in no way exhaustive. |
Notes
- CDC. Revised recommendations for HIV testing of adults, adolescents, and pregnant women in health care settings. MMWR. 2006;55(RR14):1-17.
- CDC. Basic statistics. June 28, 2007. Available at: www.cdc.gov/hiv/topics/surveillance/basic.htm. Accessed May 19, 2008.
- CDC. HIV/AIDS Surveillance Report. 2006;18. Table 3. Available here. Accessed June 23, 2008.
- HHS. Testimony: Kevin Fenton on CDC’s progress in reducing health barriers to HIV testing and improving opportunities for early diagnosis. April 26, 2006. Available at: www.hhs.gov/asl/testify/t060426a.html. Accessed May 19, 2008.
- HHS. Kevin Fenton Testimony.
- KFF. Navigating Medicare and Medicaid, 2005a: Medicaid.
Available at: www.kff.org/medicare/7240/medicaid.cfm#a1.
Accessed
December 12, 2007. - KFF. Medicare and HIV/AIDS [fact sheet]. Available
at: www.kff.org/hivaids/7171.cfm.
Accessed
December 12, 2007.
- KFF. Total Medicaid enrollment, 2005. Available
at: www.statehealthfacts.org/comparemaptable.jsp?ind=198&cat=4.
Accessed July 23, 2008.
- Kaiser Commission on Medicaid and the Uninsured.
Deficit Reduction Act of 2005: Implications for Medicaid. February
2006. Available at: www.kff.org/medicaid/upload/7465.pdf. Accessed
May 19, 2008.