Cities Advocating Emergency AIDS Relief Coalition Advocating for CARE Act Title I &Title III Policy Position Paper: Ryan White CARE Act Reauthorization June 1999

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Cities Advocating Emergency AIDS Relief Coalition
Policy Position Paper : Ryan White CARE Act Reauthorization

CAEAR Coalition
1413 K Street, NW - Seventh Floor
Washington, DC 20005
Phone 202-789-3565 • Fax 202-789-4277
CAEARinDC@aol.com

JUNE 1999

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Table of Contents

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Overview of Policy Positions

Cities Advocating Emergency AIDS Relief (CAEAR) is a national coalition that advocates for sound public health policies and resources related to the critical health care and supportive service needs of people living with HIV disease in the United States.

The Coalition is a national representative organization focusing on the needs of individuals and programs dependent on resources from Title I and Title III of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The CARE Act, first passed by Congress in 1990, was reauthorized in 1996 for five years through September 30, 2000.

The CAEAR Coalition has prepared this document to inform the Members of Congress, the Administration, and the public about key policy perspectives from consumers of HIV/AIDS services, HIV/AIDS service providers, and concerned citizens who are affiliated with Ryan White CARE Act Title I and Title III. The Coalition has received input from hundreds of individuals through its own regular membership meetings, planning council surveys, and special meetings of CAEAR members in December of 1998 and May 1999, which focused entirely on CARE Act reauthorization issues.

The CAEAR Coalition’s policy recommendations on CARE Act reauthorization center on the key questions and their answers, as presented below briefly. Expanded discussion of these questions can be found in the attached document.

1. Should the CARE Act be reauthorized by the 106^th Congress and signed into law by the President in order to ensure continued access to comprehensive primary care, HIV treatments, and supportive services for people living with HIV disease in the United States?

Answer: YES. The services provided by the CARE Act continue to be urgently needed by low-income, uninsured, and underinsured individuals living with HIV/AIDS. The federal CARE Act resources are critical to localities in their efforts to establish and maintain comprehensive medical and supportive systems of care.

2. Does the existing structure of the CARE Act continue to provide comprehensive and coordinated medical and supportive care to people living with HIV/AIDS?

Answer: YES. Title I of the CARE Act has expanded from the original 16 cities hardest hit by the AIDS epidemic to now include 51 emergency eligible metropolitan areas. The resources ensure that the basic infrastructure for comprehensive medical and supportive services exist in localities most heavily impacted by the HIV/AIDS epidemic. Title III grants to existing community-based health centers ensure that individuals have access to high quality HIV primary health care at sites that are familiar to them and located within their communities. Increasingly new Title III sites are located in geographically isolated areas and are the only local access points to quality HIV care.

3. Is it possible to improve the design of the current formula used to distribute emergency funding under Title I of the Ryan White CARE Act?

Answer: YES. The CAEAR Coalition proposes the replacement of the 10-year weighted AIDS case band with the CDC living AIDS case data report corrected for late reporting as the primary data set used to distribute Title I formula funding. The Coalition continues to believe that dramatic shifts in funding should be avoided by the retention of a hold harmless provision. The CAEAR Coalition will promote a hold harmless provision that limits the formula reductions to any EMA to no more than 2 percent a year for a maximum of 10 percent over five years (a doubling of the existing 1 percent per year limit on formula reductions).

4. Should the 50/50 ratio between Title I formula and supplemental funding be maintained?

Answer: YES. The formula funding continues to direct funds to communities most heavily impacted by the AIDS epidemic. In addition, to this essential purpose, the supplemental funds simultaneously seek, by means of competitive grants, to direct funds to those Title I areas which are using Title I funding in the most creative and efficient manner and face particularly severe needs.

5. Should the federal government continue to provide direct Title III grants to public and community-based health centers to improve access to HIV early intervention medical and related supportive care—with special emphasis on underserved and geographically isolated communities?

Answer: YES. Title III grants provide an ability to the federal administration to target grants to those underserved and heavily impacted areas in desperate need of enhanced access to high quality HIV primary medical care and essential supportive services. Increasingly Title III grants are targeted outside of urban areas—focusing on geographically isolated communities that have been traditionally underserved.

6. Question: Have the administrative caps on CARE Act resources effectively targeted resources to essential medical and supportive services to people living with HIV/AIDS?

Answer: YES. The administrative cap for Title I grantees should remain at 5 percent per year. The administrative cap for the directly funded Title III programs should be increased to 10 percent from their current level of 7.5 percent to correspond to the similar 10 percent cap on individual contractors in Title I. The revised CARE Act should clarify that the costs related to data collection, quality improvement, quality assurance and evaluation/analysis of CARE Act programs are not required to be covered by the administrative cap. Additional resources should be provided to grantees to conduct these essential functions.

7. Question: Local decision-making and control over resources define Title I of the CARE Act. Does the current design continue to provide appropriate access to essential HIV/AIDS medical care and treatment without federal mandates?

Answer: YES. Local decision making works. Planning Councils establish comprehensive continua of care to address local needs by setting Title I service priorities, allocating resources to each priority, and evaluating the efficiency with which resources are distributed and contracts managed. Local planning council membership is mandated to mirror the diversity and demographics of the local epidemic while including representation from key health care stakeholders. The needs assessment processes, managed by these planning councils, are informed by community input from clients, providers, grantees, and concerned citizens. This input creates a local plan that is responsive to the specific needs of individuals living with HIV/AIDS in the local areas.

8. Should the current U.S. Public Health Service guidelines on HIV care and the prophylaxis of opportunistic infections be used as a minimum standard for medical care and treatment provided by CARE Act funded providers with assurances that both providers and consumers are informed of the rapid and ongoing developments in the clinical management of HIV disease?

Answer: YES. Treatment guidelines define a minimum standard of care for HIV disease among various populations. They also help to support health care professionals and consumers in the decision-making processes related to the clinical management of HIV disease. To increase provider knowledge and expand access to the highest quality HIV care among CARE Act providers, CAEAR believes the Secretary should be directed to create a mechanism that ensures that updates to the PHS guidelines are actively communicated to all CARE Act funded health care providers.

9. Should the Office of the Secretary of Health and Human Services ensure that resources appropriated by Congress to ensure appropriate data collection, analysis, and evaluation of CARE Act funded services be allocated to the Health Resources and Services Administration (HRSA) so that the appropriate level of staff and resources can be targeted to this purpose?

Answer: YES. Many of the essential data collection, analysis, evaluation, and technical assistance functions could be carried out in a more timely and appropriate manner by the Health Services and Resources Administration (HRSA) if the agency had full access to the percentage allocated for that purpose from CARE Act appropriations. The Secretary should be directed to provide the full one- percent of CARE Act funding for data collection and evaluation to HRSA. The Secretary should also be directed to evaluate the utility, cost, and feasibility of developing a widely available, client-level, reporting system as a possible source of useful data.

10. Question: Beyond the establishment of a continuum of quality HIV health care and supportive services, the success of the CARE Act is determined by the extent to which Americans living with HIV disease have access to and benefit from these services. Can existing methods used by CARE Act grantees be improved to eliminate access barriers to HIV health care and support services for specific target populations?

Answer: YES. CAEAR supports a more formal approach to addressing these problems. The Secretary should explicitly instruct Title I and Title III grantees to engage in the identification and implementation of new and creative solutions to the challenge of disparate outcomes. Specifically, the Secretary should direct all Title I planning councils and grantees, as a part of the existing needs assessment processes, to measure health outcome disparities among individuals living with HIV/AIDS and to identify the target populations in their local communities that continue, despite existing efforts, to suffer significant HIV-related health outcome disparities. Further, Title I grantees, Title I planning councils, and Title III grantees should be directed to continue to create and enhance strategies to address health outcome disparities.

11. HIV comprehensive systems of care are designed to provide broad access to medical and supportive services. Despite the best efforts of local communities, is there a need for additional targeted federal allocations serving hard-to-reach populations disproportionately affected by the HIV/AIDS epidemic and for better coordination at the federal level?

Answer: YES. CAEAR supports the specific, targeted allocation of new resources to improve access to services and high quality HIV medical care, treatment and supportive services to underserved, hard-to-reach populations. CAEAR supports national initiatives, with local flexibility, as long as the allocations continue to flow through the existing Titles of the CARE Act and are not used to supplant other HIV/AIDS resources.

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The Case for CARE Act Reauthorization

Why the CARE Act is so urgently needed

The Ryan White CARE Act expires on September 30, 2000. The HIV/ AIDS health care and related supportive services provided through the CARE Act are critically important and will continue to be to tens of thousands of people living with HIV/AIDS in the United States. Therefore Congress should reauthorize the CARE Act before September 2000 in order to ensure continued access to these critically important systems of care and life-saving services.

Impact

The HIV/AIDS epidemic in the U.S. must be viewed as part of a worldwide pandemic that continues to devastate the public health systems in many countries and ends the lives of millions worldwide. Through December 1998, 688,200 individuals in the U.S. had been diagnosed with AIDS, the end stage of HIV disease. Of this number, 417,357 have already died. The Centers for Disease Control and Prevention (CDC) estimates that over 40,000 Americans become infected with HIV annually and that today an estimated 600,000-900,000 Americans are living with HIV disease, including AIDS.

Communities Affected

The HIV epidemic in America is far from over. Since the CARE Act began in 1991, the number of American communities eligible for emergency assistance under Title I has grown from 16 to an astounding 51. As the HIV epidemic continues its relentless expansion, communities of color, African American women, Latinas, and gay and bisexual men are being disproportionately impacted. While continuing to significantly impact white gay and bisexual men, HIV infections since 1995 have increased most rapidly within communities of color. And today fully two thirds of Title I and Title III clients are people of color.

Increasingly, the newly infected are likely to be of color, heterosexual, poor, women, youth, substance users, the elderly, and homeless or marginally housed persons. Some of these factors further complicate HIV service delivery and strain already overburdened community-based and local public health care systems. As we approach the millennium, it is critical for us to recognize that no community is immune from this disease, and that we must care for each community if we are to stop the progress of HIV and preserve the nation’s health care systems.

Still No Cure

The improved clinical management of HIV disease and the widespread use of combination anti-retroviral therapies have resulted in dramatic reductions in HIV-related opportunistic infections and deaths. However, the number of people becoming newly infected with HIV has remained relatively stable. Consequently more people than ever are in need of care. There is no respite in sight from the pressing health emergency facing America.

In 1996, community members and medical researchers were optimistic that newly available highly active anti-retroviral therapies (HAART) would soon lead to eradication of the virus and perhaps even a cure for HIV disease. This euphoria led many to declare the AIDS crisis over, a prediction that has proven to be woefully incorrect.

Unfortunately, it is now clear that while these new treatments have restored the health of many individuals living with advanced HIV disease, and are largely responsible for the dramatic national reductions in AIDS-related deaths, they are not a cure. Clinical trial data presented by John Bartlett, MD from Johns Hopkins Medical Center, has demonstrated that for approximately half of those individuals in care with extensive, prior, anti-retroviral experience, the available HIV treatments have failed to be fully effective.

For those who have achieved benefits, the new treatments have increased the complexity and cost of their care. Many individuals are requiring more frequent and longer medical visits after the initiation of anti-retroviral therapy. A 1998 CAEAR survey found the average length of medical visits increased 65 percent between 1995-97, and the average cost of medical care rose 89.3 percent. HIV anti-retroviral treatments involve demanding and complicated dosing schedules and routines and are sometimes accompanied by serious side effects. These are truly challenging regimens, even for the most conscientious of patients who recognize that prevention of resistance to these medications depends on adhering to these regimens.

Despite these challenges, the success of early access to outpatient medical care, treatment, and support services is undeniable. The Centers for Disease Control and Prevention (CDC) National Center for Health Statistics (NCHS) recently released data showing the inpatient hospitalization rates for HIV-infected patients continues to decline. In1997, the nation saw a 30 percent decline in HIV/AIDS related hospitalizations (71,000 fewer) than in 1995. This reduction in hospitalizations combined with an overall reduction in the lengths of stay for those who are hospitalized contributed to a reduction of 900,000 total days of hospital care. The hundreds of millions of dollars in cost savings these reductions represent are due to the community-based outpatient support provided through Title I and Title III of the CARE Act. To sustain these results, supportive services such as treatment adherence programs and ongoing education about anti-HIV medications have grown in importance.

The advent of HAART has altered what constitutes an appropriate array of primary health care and supportive services for many people living with HIV disease. In 1998, the U.S. Public Health Service issued guidelines for the use of these anti-HIV medications. For many recipients there has been a dramatic shift from palliative, end stage care and prophylactic treatment of opportunistic infections, to the active treatment of HIV infection. With diagnostic tests now available to monitor HIV disease progression, care providers and their patients create care plans based on a more scientific understanding of HIV treatment.

The flexibility of the local planning process required under Title I, and the community-based strengths incorporated into the design of Title III, have allowed many communities to quickly and efficiently adapt to emerging treatment strategies and to provide increasingly high quality and cost effective HIV care and supportive services. As a result, many people with HIV disease are living longer, more productive and healthier lives. Care created by the Ryan White CARE Act must continue to stabilize individuals and family units thrown into crisis by HIV/AIDS, and resources for the Act must be expanded to meet the growing and evolving need.

The next chapter presents the Coalition’s specific policy positions along with discussion of the key issues that need to be considered during reauthorization of the CARE Act.

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The CAEAR Coalition’s CARE Act Reauthorization Policy Recommendations

Key questions, answers, and justifications

Beginning in the spring of 1998, the CAEAR Coalition engaged in an intensive review of the current and future key strategic issues facing people with HIV/AIDS, their communities, and the public health systems that respond to their health and life needs.

In national meetings in September 1998, December 1998, and May 1999, the Coalition’s membership focused on the key issues related to reauthorization of the CARE Act.

We intend for these positions to outline the key areas of interest to the Title I and Title III communities. They will also provide a basis for the many policy discussions that will occur along the successful path to reauthorization of the CARE Act.

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Coordinating Care through the CARE Act

Does the existing structure of the CARE Act continue to provide comprehensive and coordinated medical and supportive care to people living with HIV/AIDS?

Yes.

The CAEAR Coalition supports maintaining the current structure of the CARE Act intact within a reauthorized Act.

The existing structure of the CARE Act provides a comprehensive structure and dynamic approach to the planning and delivery of HIV primary care and supportive services to people living with HIV disease.

The CARE Act was originally structured with four titles targeting different systems of care and Part F, including a Special Project of National Significance (SPNS) component. Part F was expanded to include the AIDS Education and Training Centers Program (AETCs) and the AIDS Dental Reimbursement Program during the last reauthorization in 1996.

Title I of the CARE Act

Title I of the CARE Act originally distributed federal resources to 16 eligible metropolitan areas (EMAs) in the United States identified as emergency epicenters of the HIV/AIDS epidemic. These areas had private and public health care infrastructures that were collapsing under the magnitude, volume, and severity of the HIV epidemic in their areas.

By fiscal year 1999, Title I had expanded to include 51 EMAs hardest hit by the HIV/AIDS epidemic – a sad reminder of the continuing emergency in the United States. These 51 Title I EMAs are home to about 74 percent of all individuals diagnosed with AIDS in the United States. These areas are predominantly urban, and they serve as magnets for individuals from surrounding suburban and rural areas in need of HIV specialty care. The result is increasing caseloads in Title I EMAs, which in turn puts even more pressure on funding and services, and a continued danger of collapsing private and public systems of health care.

Title I funding provides critical HIV primary care and supportive services to persons living with HIV/AIDS most in need. Title I funded HIV health care and essential supportive services include but are not limited to:

• primary health care
• sub-specialty medical care (for example: obstetrics and gynecology, neurology)
• dental care
• medications
• treatment education
• laboratory tests
• home health care
• mental health care
• substance abuse treatment/counseling
• comprehensive medical case management/benefits counseling
• assessment for work entry/re-entry
• legal services
• transitional housing
• food and nutritional services
• transportation to care services

The CARE Act requires the establishment of a local HIV health services planning council in each of the Title I communities. The purpose of these planning councils is to conduct needs assessments and prepare comprehensive plans for the delivery of HIV services for low-income, uninsured, and underinsured individuals living with HIV disease in their areas. Councils set annual priorities for services and allocate the Title I resources available to provide them. In addition, councils are responsible for assessing the efficiency with which Title I funds are made available to the community. These features assure local responsibility for addressing a local problem and are a model for federal initiatives. The planning council process represents a welcome departure from top-down models of health care planning and service delivery that often fail to address local service needs.

Title III of the CARE Act

As of early 1999, Title III of the CARE Act provides direct federal grants to 181 community-based and public health centers in 43 states, the District of Columbia, and Puerto Rico to provide comprehensive, early intervention HIV/AIDS health care to historically under-served communities, families, and individuals living with HIV disease in urban and rural areas. Title III is intended to establish or enhance the HIV-specific service capacity of already existing public health service programs. Title III allows clients to receive a continuum of HIV primary care from the same community-based organizations that provide them with other kinds of medical care and allows for the creation of innovative systems of care. Building the capacity within existing community health services is both cost-effective and an efficient use of available resources. This is a model for public health programs of the future.

One of the several goals of the Title III program is to provide HIV primary care to hard-to-reach individuals and geographically isolated communities who have HIV care needs. Over two-thirds of patients served by Title III are people of color and over one-third of these patients are women. Clearly, Title III plays a critical role in efforts to increase the early diagnosis and treatment of HIV disease within the African American and Latino communities, as well as other underserved and disproportionately affected communities. Title III grantees are mandated to allocate at least 50 percent of funds to health care services. In 1998, Title III grantees actually allocated 74 percent of their grants to primary medical care and medications.

Ensuring Access to Early Intervention HIV Services for People Living with HIV/AIDS

By providing Title III grants directly from the federal government to community providers, Title III ensures a rapid clinical response to ever-changing treatment practices and addresses inadequacies in primary care and supportive services to poor areas, smaller cities, and rural communities. Approximately 23 percent of Title III programs are the only outpatient HIV health care program available in their area. In 1998, Title III served over 96,000 people living with HIV disease. Over 50 percent of Title III providers are located in rural and geographically isolated communities outside Title I areas.

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The Title I Formula and Supplemental Funding Distribution

Is it possible to improve the design of the current formula used to distribute emergency funding under Title I of the Ryan White CARE Act?

Yes.

At the outset, the CAEAR Coalition wishes to emphasize that no Title I community receives adequate federal resources to fully meet the needs of people living with HIV/AIDS. To provide such resources in support of local efforts to establish comprehensive HIV/AIDS systems of care is clearly the paramount goal of Title I. The CAEAR Coalition will continue to advocate for increases in Title I resources to more adequately address the increasing needs of Title I clients. In order to sustain and expand these systems of care, the Title I formula should seek, to the extent possible, to fairly distribute the burden of unmet need among Title I areas while protecting existing systems of care from destabilization.

The current Title I formula is based on the number of AIDS cases diagnosed over the ten years immediately preceding the current year, with each year, further away from the current year, given a lower weight in determining awards. This is the so-called ten-year weighted case band, designed as a surrogate measure for the burden of the AIDS epidemic on the systems of health care in areas eligible for Title I funding.

The ten-year band was established, prior to combination therapy, to more accurately reflect those living with AIDS. However, combination therapy (also referred to as HAART) has dramatically lengthened the life spans of some clients receiving these treatments, calling into question the extent to which the band will continue to serve its purpose. In addition, it is clear that not every person living with AIDS in a particular Title I community utilizes Title I funding every year, and that the current formula does not capture the significant number of HIV positive individuals—not AIDS diagnosed—who do receive Title I services in a given year.

Therefore, the current Title I formula, established during the prior reauthorization of the Ryan White CARE Act, is an imperfect, but useful mechanism for providing federal resources to communities endeavoring to develop comprehensive systems of medical and supportive services for people living with HIV/AIDS.

Because the ten-year band was projected to redirect resources away from some Title I communities towards others, a so-called "hold harmless" provision was inserted into the Title I formula. This provision does not prevent reductions in a Title I area’s formula funding. However, it does ensure that such reductions are phased in over time. This "phased in reduction" provision guaranteed that no Title I community would lose more than one percent per year in formula funding for a total potential loss of five percent, relative to a Fiscal Year 1995 baseline, over the lifetime of the five- year authorization. The intent of this provision was to provide a mechanism to prevent the rapid destabilization of existing health care systems even as the new formula might direct resources to emerging areas.

Recommendation

The CAEAR Coalition recommends that the current formula be updated. The new formula should be based on the cumulative estimate of living AIDS cases (corrected for late reporting) as reported by the Centers for Disease Control and Prevention (CDC). The Coalition believes this measure is simpler, more direct, and more accurate than the ten-year weighted case band contained in the current Title I formula.

The CAEAR Coalition believes that the phased in formula reduction or hold harmless provision continues to be a necessary mechanism in the Title I formula in order to prevent the rapid destabilization of existing health care systems, even as the formula responds quickly and flexibly to changes in the epidemic. In order to accelerate a more even distribution of unmet need, the Coalition recommends that the redirection of resources permitted in the new reauthorization be increased from one percent to two percent per year, with a maximum reduction of ten percent in formula funding for any eligible metropolitan area from an FY 2000 baseline over the lifetime of the authorization.

Additionally, the CAEAR Coalition calls to the attention of the Congress that, as new HIV prevalence data becomes available, such data may provide, in part, a better basis for allocating some Title I resources. These data are currently not available, and mindful of the changes quickly wrought in this epidemic from the advent of combination therapy, the Coalition believes that it would be imprudent to endorse the use of such data at this time.

Maintaining the 50/50 Ratio of Title I Formula to Supplemental

CAEAR strongly believes that the current structure of Title I of the Ryan White CARE Act, including both formula and supplemental portions, should be maintained. The formula half of Title I continues to direct funds to the communities most heavily impacted by the AIDS epidemic. The supplemental half does the same, but simultaneously seeks, by means of competitive grants, to direct funds to those Title I areas that use Title I funding in the most creative and efficient manner and face particularly severe needs. The Coalition supports continuing the competitive element of the supplemental award to assure that a substantial portion of CARE Act funds are awarded on the basis of merit.

Measuring the Severity of Need in Title I EMAs

In reauthorizing the CARE Act in 1996, the Congress acknowledged the many significant co-morbid factors that contribute to the complexity of providing HIV health and supportive services. These co-morbid conditions include substance abuse, tuberculosis, mental illness, homelessness, and sexually transmitted diseases. The Secretary of Health and Human Services was authorized to use severe need as a factor in the distribution of the supplemental portion of Title I resources.

Recommendation

The CAEAR Coalition affirms the importance of using co-morbid factors in assessing the need for Title I resources. However, the Coalition is troubled by the inability of the Department of Health and Human Services to develop a uniform set of criteria against which to measure the many severe needs of Title I areas as required by the 1996 reauthorization statute. The absence of this set of criteria has made a national comparison of statistics across localities impossible.

CAEAR believes that in addition to the factors currently used to determine severe need, the Secretary of HHS may consider the inclusion of factors such as: the HIV Cost and Services Utilization Study (HCSUS), the cost of providing care, which may include the cost of transportation to and from care, the density of HIV in the population, the rate of poverty in the EMA, the prevalence of Hepatitis B and Hepatitis C, the need for the development of infrastructure in areas of increasing need for AIDS services, and the need to ensure access to comprehensive care in geographically isolated areas. These measures of need should be standard, equivalent, and applied consistently across all Title I areas. Because of the increasing impact of these co-morbid conditions on the ability of Title I EMAs to provide care, the Coalition believes that, to reflect the increasing impact, the weight of severity of need should be increased to one-third of the points used to award Title I supplemental grants.

The Coalition acknowledges that, because it is difficult to find local data that are comparable across Title I areas, there are concerns about the feasibility of developing an appropriate and uniform set of criteria against which to measure the severity of needs in local communities. The Coalition, therefore, calls on the Congress to require the Secretary to convene by 2001 a panel of experts to examine the feasibility of developing such criteria, as outlined above, that can be used to measure the severity of these needs consistently across localities. The Secretary shall create, test, refine, and implement such criteria by FY 2002, or if no uniform set of criteria can be developed, the Secretary shall report to Congress at that time on the barriers that prohibit implementation.

Pending the development of such criteria, the Department should continue to base its consideration of severe need on a detailed description and qualitative analysis contained in the supplemental application, which may include any local prevalence data gathered and analyzed by the eligible area.

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Distributing Targeted Resources through Title III Grants

Should the federal government continue to provide direct Title III grants to public and community-based health centers to improve access to HIV early intervention medical and related supportive care—with special emphasis on underserved and geographically isolated communities?

Yes.

The CARE Act should continue to target and directly fund community-based and public health care centers to provide HIV early intervention medical and supportive services to people living with HIV disease. Title III grants provide an ability to the federal administration to target grants to those underserved and heavily impacted areas in desperate need of enhanced access to high quality HIV primary medical care and essential supportive services. Increasingly Title III grants are targeted outside of urban areas—focusing on geographically isolated communities that have been traditionally underserved.

CAEAR continues to support the CARE Act provision that authorizes Title III HIV early intervention grantees to allocate at least 50 percent of each grant for primary care services. Title III programs should also continue to provide free services to individuals with incomes at or below 100 percent of the federal poverty level (FPL), with a sliding scale fee for individuals above that level (capped at specific amounts for 101%-200% FPL, 201%-300% FPL, and over 300% FPL).

The CAEAR Coalition supports the continuation of these provisions within Title III of the CARE Act.

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Containing Administrative Costs by way of Caps for Title I and Title III

Have the administrative caps on CARE Act resources effectively targeted resources to essential medical and supportive services to people living with HIV/AIDS?

Yes.

Title I and Title III CARE Act grantees have historically maximized federal dollars for primary care and related supportive services by limiting the amount of administrative costs. These caps have rarely compensated for the costs of doing business, but have maintained the CARE Act as a model of efficiency and cost effectiveness.

Title I grantees are limited to 5 percent of their grant amount for basic grants administration, including funding distribution, grants monitoring, and fiscal management. In addition, the CARE Act mandates flexible administrative caps, up to a maximum of 10 percent, for individual contractors at the local level who receive grants from the local government entity. This differential in percentages was created intentionally by the Congress, recognizing that grantees overseeing an entire Title I allocation often would be applying the percentage to millions of dollars, while individual agencies would most likely be applying the percentage to thousands of dollars.

Federal administrators and Title I planning councils, however, are increasingly requiring in-depth evaluation of health outcomes, quality assurance, quality improvement, and data collection and analysis. These important functions are resource intensive and consequently require additional sources of support.

Title III grantees are local community health centers, hospital outpatient care programs, health departments and other community-based organizations which in size are more similar to the individual contractors under Title I, but face some of the same demands as the larger government grantees under Title I for evaluating health outcomes, quality assurance, quality improvements, and data collection and analysis. Administrative expenses for these directly funded Title III grantees, however, have been capped at 7.5 percent.

The CAEAR Coalition strongly recommends that the 5 percent administrative cap for Title I be maintained with the continuation of the flexible, 10 percent administrative cap for Title I individual contractors. Under Title 26 of the Public Health Service Act, the Department of Health and Human Services is allocated for evaluation purposes one percent of total CARE Act funding. From that allocation, the Department should provide funding to Title I and Title III grantees for the evaluation and analysis functions, separate from the administrative cap.

The anomaly of the 7.5 percent cap on Title III grantees should be corrected by raising the administrative cap to 10 percent. The Title III administrative cap should be increased to reflect that, in size, Title III grantees more closely resemble Title I individual contractors than Title I grantees and also to reflect the limited availability of discretionary resources.

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Local Planning and Decision Making

Local decision-making and control over resources define Title I of the CARE Act. Does the current design continue to provide appropriate access to essential HIV/AIDS medical care and treatment without federal mandates?

Yes.

Local decision making is the cornerstone upon which Title I of the CARE Act is based. The CARE Act mandates the establishment of a planning council within each Title I eligible metropolitan area. The planning council is responsible for conducting a needs assessment at the local level that reviews all health care resources in that area to determine continuing unmet need. Planning councils establish comprehensive continua of care to address local needs by setting Title I service priorities, allocating resources to each priority, and evaluating the efficiency with which resources are distributed and contracts managed. Local planning councils are comprised of consumers, health care providers, community leaders, local representatives of CARE Act Title II, Title III, and Title IV, other CARE Act grantees, mental health providers, substance abuse providers, Medicaid representatives, local and state government representatives, and other interested parties.

The CAEAR Coalition believes local decision making is the critical component responsible for the success of Title I of the CARE Act. This manner of planning for and enhancing comprehensive continua of HIV care stands as a model for effective, dynamic, and responsive health care and supportive service delivery for other national, state, and local initiatives. Local decision making ensures a rapid disbursement of funds, community involvement, and grantee accountability. It continues to be the best and most responsive system to identify and remedy gaps in services and barriers to access at the local level. The CAEAR Coalition supports outreach efforts at the local level to encourage local participation in the planning process that accurately reflects the demographics of the local HIV/AIDS epidemic.

Ensuring Effective Planning to Address Local Needs

The current provision that at least 25 percent of each local planning council be comprised of individuals living with HIV disease has improved the input of CARE Act consumers to the planning process. Title I has a long-standing commitment to setting a high priority for HIV health care and increasing access to HIV services. Each planning council is routinely required to engage in data collection and analysis, strategic planning, and cost-benefit analysis. Parliamentary procedures are often used to negotiate numerous policy issues as the council works towards a consensus of the local stakeholders.

Finally, internal procedures can be complicated, such as the mandated grievance processes required by the CARE Act. Many of these complex issues may not be well understood by all planning council members. Planning councils work most effectively when they are knowledgeable of and familiar with both internal and external governing and planning procedures utilized to accomplish their critical work.

The CAEAR Coalition believes that the Health Resources and Services Administration (HRSA) should provide technical assistance to planning councils as they continue to strengthen the available training for all people who serve on Title I planning councils. This will ensure that the parliamentary and planning processes are continually enhanced by the expertise and life experiences of its members.

Ensuring Access to Essential Services for People Living with HIV/AIDS

The CARE Act provides a vital continuum of care for people with HIV and AIDS. Title I has a long-standing commitments to setting a high priority for HIV health care and increasing access to HIV services. Title I areas regularly allocate over 60 percent of their funding to health care services including medications; Title III, mandated to allocate at least 50 percent of funds to health care services actually allocates 74 percent of funding for health care and medications.

This commitment to primary health care services at the local level will continue with the emergence of more effective treatments for HIV itself, as well as HIV-related opportunistic infections. In addition to health care, CARE Act clients receive essential support services that help link them to and maintain them in medical care. Some examples include case management, food and nutrition services, transportation, housing assistance, and treatment education. Growing requests for assistance from people physically and mentally able to re-enter or train to enter the work force are indicative of altered needs.

Suggestions that a mandated set of core services be implemented are unwarranted. The identification of a core set of services is by definition an outgrowth of good local planning and should not be mandated from the federal level. Regionally specific continua of care are currently planned for and then implemented through the local processes. In each instance, these continua of care are designed to respond to local identified gaps in services and address the unmet needs of local clients.

The CAEAR Coalition opposes the establishment at the federal level of a core set of Title I services, percentage set-asides for specific services, or limiting the amount of funding that can be allocated at the local level for an approved service.

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Assuring Quality of Care through CARE Act Funded Providers

Should the current U.S. Public Health Service guidelines on HIV care and the prophylaxis of opportunistic infections be used as a minimum standard for medical care and treatment provided by CARE Act funded providers with assurances that both providers and consumers are informed of the rapid and ongoing developments in the clinical management of HIV disease?

Yes.

CARE Act providers have worked to assure that they provide the highest quality community-based HIV primary care and supportive services. With the development of effective anti-retroviral treatments, CARE Act funded programs have emerged as important mechanisms for the dissemination of high quality HIV-specific treatment practices.

In 1996, the Department of Health and Human Services and the Henry J. Kaiser Family Foundation convened the Panel on Clinical Practices for the Treatment of HIV Infection. This panel has produced guidelines for the use of anti-retroviral agents in HIV-infected adults and adolescents. Other panels have produced treatment guidelines for prophylaxis of HIV-related opportunistic infections, treating HIV-positive pregnant women, and treating children under 13 years of age. These guidelines are all designed to inform health care providers of the standard of care for HIV disease and the treatment and prophylaxis of HIV-related opportunistic infections. Given a swiftly evolving HIV treatment environment, and owing to the amount of time required for federal guidelines to be updated, the guidelines tend to be outdated to some degree upon their dissemination.

In effect, treatment guidelines define a standard of care for HIV disease among various populations. They also help to support health care professionals and consumers in the decision-making processes related to the clinical management of HIV disease. The CAEAR Coalition supports the use of these federal guidelines as a minimum standard for CARE Act funded HIV health care providers and recognizes that resources are necessary to provide the standard of care to patients seeking care for HIV disease.

The CAEAR Coalition believes all people living with HIV are entitled to high quality HIV health care provided by knowledgeable health care professionals. The Coalition supports a sufficient authorization for each Title of the CARE Act to assure that CARE Act funded providers of HIV primary care are able to employ, as a minimum standard for medical care and treatment, the most current versions of the U.S. Public Health Service (PHS) guidelines on HIV treatments and prophylaxis for HIV-related opportunistic infections. Further, the CAEAR Coalition believes that the Secretary should be directed to create a mechanism that ensures that updates to the PHS guidelines are actively communicated to all CARE Act funded health care providers.

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Improving the Data Collection, Analysis, and Evaluation Process at HRSA

Should the Office of the Secretary of HHS ensure that resources appropriated by Congress to ensure appropriate data collection, analysis, and evaluation of CARE Act funded services be allocated to the Health Resources and Services Administration (HRSA) so that the appropriate level of staff and resources can be targeted to this purpose?

Yes.

Congress affirmed the importance of data collection, analysis, and evaluation when it stipulated that one- percent of the annual CARE Act appropriation be used for data collection and evaluation at the Health Resources and Services Administration (HRSA). To be responsive to the growing complexity of the HIV/AIDS epidemic, planning requires reliable data on changing trends and outcomes at both the national and local levels. The Coalition remains concerned that the Department of Health and Human Services has not allocated the full funding for these data management functions to HRSA.

The HIV/AIDS Bureau (HAB) at HRSA does not receive the resources from the Office of the Secretary that are Congressionally appropriated for data collection and evaluation. Because of inadequate resources at the HAB level, there is insufficient staff devoted to the data collection and evaluation efforts at HRSA. This has resulted in data reports that are incomplete or unresponsive to the key planning and evaluation questions being faced by communities, thereby hampering local efforts to make fully informed decisions.

The Secretary should be directed to provide the full one- percent of CARE Act funding for data collection and evaluation to HRSA. Further, the CAEAR Coalition believes the Secretary should be directed to evaluate the utility, cost, and feasibility of developing a widely available, client-level, reporting system as a possible source of useful data.

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Improving Access to CARE Act Programs for the Underserved

Beyond the establishment of a continuum of quality HIV health care and supportive services, the success of the CARE Act is determined by the extent to which Americans living with HIV disease have access to and benefit from these services. Can existing methods used by CARE Act grantees be improved to eliminate access barriers to HIV health care and support services for specific target populations?

Yes.

Historic inequalities, the impact of co-morbid conditions on people living with HIV disease, the shifting demographics of individuals in need of care, and evolving HIV treatment options continually challenge local planning bodies to assess the effectiveness of outreach to connect targeted populations to the care system. Outreach efforts used to connect people living with HIV disease with available services must continuously be evaluated to assess their effectiveness with emerging populations in need of care and treatment. Successful and innovative approaches to outreach efforts should be shared at the earliest possible moment by the HIV/AIDS Bureau of the Health Resources and Services Administration (HRSA) with other federal programs that serve the same populations.

Addressing Health Outcome Disparities

An important responsibility of local planning bodies and grantees is the identification, reduction, and elimination of barriers to existing health care, and to the extent possible, eliminating existing health outcome and quality of life disparities experienced by historically underserved populations.

In 1998, the National Medical Association found that overall in the nation African Americans were most likely to receive their first treatment for HIV-related conditions when they required hospitalization and that a significant number of African Americans discover they are living with AIDS within one month of their death. In addition, studies have identified significant health outcome disparities between whites and African Americans, Latinos, and youth living with HIV disease. These health outcome disparities suggest that the existing health care system is often challenged to reach and provide quality services to many of those most in need.

Years of grappling with these challenges have forced the realization that standardization of services may not, in and of itself, guarantee uniform outcomes for affected populations. Similarly, providing services in a culturally specific setting does not always resolve the access and quality of care concerns inherent in the disparities between racial, ethnic, and gender groups.

The CAEAR Coalition will continue to work at the national level to reduce and eliminate, whenever possible, health outcome disparities between specific populations at risk for or living with HIV disease. The Coalition is also aware that there are myriad reasons for disparities in health outcomes between various target populations. The CARE Act, as important as it is, cannot be expected to resolve broad health care disparities that are the responsibility of the larger public health system and society as a whole. Title I grantees, Title I planning councils, and Title III providers have great expertise and understanding of their local communities and can be agents for change.

The CAEAR Coalition supports a more formal approach to addressing these problems. CAEAR believes that the Secretary of Health and Human Services should explicitly instruct Title I and Title III grantees to engage in the identification and implementation of new and creative solutions to the challenge of disparate outcomes.

Specifically, the Secretary should direct all Title I planning councils and grantees, as a part of existing needs assessment processes, to identify the target populations in their local communities that continue, despite existing efforts, to suffer significant HIV-related health outcome disparities. Further, the Secretary should direct Title I grantees, Title I planning councils, and Title III grantees to continue to create and enhance strategies to address health outcome disparities. Additional funding should be authorized to allow the Department of HHS to provide Title I grantees, Title I planning councils, and Title III grantees the additional resources required to identify such disparities and implement plans to address them.

Finally, the Secretary should be directed to evaluate the success of grantees in identifying health outcome disparities and implementing plans to address health outcomes disparities, and beginning in fiscal year 2003, use such evaluation, as one measure, in determining Title I supplemental awards and Title III grants.

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Targeting Resources to Hard-to-Reach Populations and Coordinating Federal Efforts

HIV comprehensive systems of care are designed to provide broad access to medical and supportive services. Despite the best efforts of local communities, is there a need for additional targeted federal allocations serving hard-to-reach populations disproportionately affected by the HIV/AIDS epidemic and for better coordination at the federal level?

Yes.

The FY 1999 Congressional Black Caucus HIV/AIDS Initiative was instrumental in focusing the nation’s attention on the disproportionate impact of HIV disease in the African American community and the associated disparities in health outcomes. While the CAEAR Coalition strongly believes that local planning and implementation are the most appropriate mechanism to resolve access and quality of care issues for specific populations, targeted allocations are needed that provide additional resources to address broad national inequalities between racial, ethnic, and gender groups. At the same time, the CAEAR Coalition affirms that different geographic locations may confront different challenges and utilize unique strategies to reach the disenfranchised and underserved populations in their communities.

The CAEAR Coalition supports specific targeted allocations of new resources to improve access to services and high quality care to underserved, hard-to-reach populations. CAEAR supports national initiatives, with local flexibility, as long as the allocations continue to flow through the existing Titles of the CARE Act and not used to supplant other HIV/AIDS resources.

Coordination of the CARE Act with Other Federal Programs

The federal government addresses the expansion of the HIV epidemic through multiple and concurrent initiatives. Efforts include medical research (National Institutes of Health), prevention and education (Centers for Disease Control and Prevention), housing (Housing and Urban Development), substance abuse (Substance Abuse and Mental Health Services Administration), among others such as the Veterans Administration and the Indian Health Service. The CAEAR Coalition believes that federal HIV/AIDS initiatives housed in various agencies of government need to be better coordinated with the CARE Act.

The CAEAR Coalition strongly believes that CARE Act providers and consumers should be informed about and integrated into existing federal and state employment programs for people with disabilities. The CARE Act providers should serve as a link between training programs and people living with HIV disease who are able to participate in such programs.

The depth and breadth of the federal government’s commitment to fighting HIV/AIDS is extensive. Coordinating the numerous HIV/AIDS programs is an enormous undertaking that must be improved if the nation is to receive the full benefits from the cross-pollination of useful information and emerging technologies. The CAEAR Coalition understands that such wide-ranging interdepartmental coordination requires the cooperation and commitment of the White House Office of National AIDS Policy (ONAP) to implement such coordination across federal agencies. The CAEAR Coalition has requested that the President and ONAP create an interdepartmental plan of action with specific goals and time lines to better coordinate the critically important work of the federal government in the HIV/AIDS epidemic.

The CAEAR Coalition asks that the Congress request that the Administration establish a more formal and consistent interdepartmental funding and programmatic coordination plan for HIV/AIDS initiatives across the federal government.

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1999 CAEAR Officers and Executive Committee, Title I EMAs, and Title III States

Title III Grantees by States (45 as of June 1999)
Alaska	Alabama	Arkansas
Arizona	California	Colorado
Connecticut	Delaware	District of Columbia
Florida	Georgia	Idaho
Illinois	Indiana	Iowa
Kansas	Kentucky	Louisiana
Maine	Maryland	Massachusetts
Michigan	Mississippi	Missouri
Montana	Nebraska	Nevada
New Jersey	New Mexico	New York
North Carolina	Ohio	Oklahoma
Oregon	Pennsylvania	Puerto Rico
Rhode Island	South Carolina	Tennessee
Texas	Utah	Vermont
Virginia	Washington	Wisconsin

Note: This position paper is available in Adobe Acrobat format: ryanwhite.pdf