The Secretary of the Department of Health and
Human Services Mike Leavitt released Ryan White CARE Act Reauthorization
Principles on July 27, 2005 on behalf of the Bush Administration.
Release of these principles gives AIDS Action the opportunity
to restate in this document our vision for creating an effective,
efficient, and equitable system of HIV/AIDS care in the United
States and to provide recommendations to the Administration and
Congress on improving our current system of care through the Ryan
White CARE Act.
AIDS Action emphasizes that sufficient CARE
Act funding is necessary because HIV is infectious and continues
to increase at an alarming rate in this country. The rate
of increase in African American, Latino and other minority populations
has been and continues to be much greater than for the population
at large. This is unacceptable.
AIDS Action urges the Administration to focus
on providing more care and treatment wherever it is needed. However,
shifting resources away from areas where the service delivery
system is addressing the complicated needs of HIV positive individuals
to other geographic areas will not sufficiently reduce the identified
service inequities. Additional resources are needed if the Administration
and Congress intend to address inequity without destabilizing
the existing systems.
AIDS Action has previously made recommendations
regarding reauthorization of the CARE Act, and they have shaped
our response to the President’s principles. We continue to advocate
for these recommendations. In February 2005, in conjunction with
the Communities Advocating Emergency AIDS Relief (CAEAR) Coalition,
AIDS Action released, Policy Recommendations for Reauthorization
of the Ryan White CARE Act, 2005. The recommendations (Joint
Policy recommendations) can be found at:
http://www.aidsaction.org/legislation/pdf/care_act_reauthorization-recs.pdf
Background to Creating an Effective, Efficient
Equitable Response to the HIV Epidemic in the United States:
The Ryan White Comprehensive AIDS Resources
Emergency (CARE) Act, first authorized in 1990 and due to be reauthorized
by September 30, 2005, has been tremendously successful in fulfilling
its mission to provide medical care and support services for people
living with HIV/AIDS who are without access to private insurance
or other public programs. The CARE Act must continue to perform
this role.
Similarly, the CARE Act has always been a source
of funding to meet the medical and supportive needs of people
living with HIV/AIDS including not only the need for direct treatment
and care for people living with HIV/AIDS, but also for services
central to maintaining individuals in care. When necessary, the
CARE Act has been flexible enough to create infrastructure. AIDS
Action supports meeting need and maintaining equity while not
destabilizing systems of care and treatment.
There are critical issues facing the CARE Act.
There are approximately 42,000 new infections in the United States
every year. Each year, nearly 16,000 people die of HIV/AIDS related
causes. There is an increase of nearly 26,000 people living with
HIV disease every year. Many lack private insurance, are ineligible
for state or federal public insurance programs, or are under insured.
Most are poor or unemployed. Increasingly, people infected with
HIV are people of color, who are marginalized by traditional systems
of care.
Many “safety net” public programs, including
Medicaid in some states, are reducing benefits or eligibility
criteria. As the payer of last resort, the CARE Act faces an increased
burden as the result of these reductions. At the same time, all
CARE Act programs, with the exception of the AIDS Drug Assistance
Program (ADAP), have faced funding cuts for the last four years
even though the needs of people living with HIV who need services
are increasing at an ever faster rate.
AIDS Action’s Joint Policy and ADAP recommendations
focus on three fundamental issues. They recommend ensuring that
the needs of people living with HIV/AIDS are met. They also recommend
ensuring that services adapt to changes in the epidemiology as
well as to changes in the treatment of HIV/AIDS, which began in
1996 with the introduction of Highly Active Anti-Retroviral Therapy
(HAART). Finally, they recommend that systems that are currently
in place due to CARE Act funding and which serve individuals living
with this potentially fatal disease not be destabilized.
1. Continue to focus on serving people living
with HIV/AIDS and work to ensure that funding is allocated as
equitably as possible.
As we have stated above, CARE Act services
must focus on the treatment, care, and support-service needs
of people living with HIV/AIDS. The Administration’s goal of
serving the neediest first is admirable and reflects continuing
attention to ensuring that the CARE Act remains the payer of
last resort. AIDS Action has worked to address the issue of
unmet need, raised in the 2000 reauthorization, by connecting
people to care who are aware that they are infected with HIV,
but are not receiving care and treatment.
We agree with the Administration’s principles
that allocating funding on the basis of a set of indicators
to determine severity of need in certain state and local jurisdictions
may be useful in increasing equity for people living with HIV
in those state and local jurisdictions. However, we caution
that moving to a system that allocates funds only on a per capita
basis will not necessarily result in greater equity of health
outcomes, or in the provision of equivalent, effective, and
efficient services. Additionally it is important to note that
for a severity of need index to be effective, funding must be
made available to develop and apply the index and to ensure
that the needs which are identified are being met.
AIDS Action recommends that in creating
such an index, the federal government ensures consistency of
benefits and access for people living with HIV/AIDS throughout
the U.S. The Administration and Congress should focus on
ensuring that health outcomes improve for all people living
with HIV/AIDS. To do so, they must ensure that any severity
of need index which is developed includes those factors most
related to difficulties in attaining treatment, care, and supportive
services. AIDS Action agrees with the Administration’s statements
that it is important to remain focused on the treatment and
supportive service needs of people of color in low-income, high
impact communities, including African Americans and increasingly
Hispanic people. Additionally, special attention must be paid
to ensure that people in poverty (both in urban and rural areas)
who are living with HIV/AIDS are able to access care. Each of
these factors should be included in a severity of need index.
AIDS Action supports the concept of distribution
based on need. However, any funding adjustments must be
based on more analysis and more complete data. Funding should
not simply be shifted into jurisdictions that have limited infrastructure,
as it may compromise the effective and efficient investment
of resources. AIDS Action recommends as an option for some
jurisdictions a capacity-expansion program targeted to rural,
minority, and medically underserved communities.
Additionally, any severity of need index should
encourage the use of other funding sources to supplement the
CARE Act and it should not result in reduced federal funding
for jurisdictions that have done a good job of creating a continuum
of care for those living with HIV/AIDS and that have contributed
local resources. AIDS Action opposes the inclusion of often
fluctuating private resources in any severity of need formula.
AIDS Action will work closely with the Administration,
Congress, people living with HIV/AIDS, and other members of
the community to develop a set of comprehensive criteria to
address equity issues.
2. The need for HIV care continues
to be an emergency.
There is a stable HIV/AIDS incidence of 42,000
new infections across the country each year. Consequently, the
pool of undiagnosed people living with HIV/AIDS is larger than
ever. The epidemic remains an emergency due to cuts to state
Medicaid programs and other safety net programs at the federal,
state, and local level.
AIDS Action opposes eliminating “the 80/20”
provision in Title II of the CARE Act as proposed by the Administration.
Elimination of 80/20 provision would in many cases increase
inequity by shifting funding to low incidence states and jurisdictions.
The Administration’s focus on the interrelationship of the respective
formulas contained in Title I and Title II erroneously implies
that additional funding is not needed in the states which contain
part of an Eligible Metropolitan Area (EMA), or one or more
EMAs. According to GAO preliminary testimony, titled Ryan
White CARE Act; Factors that Impact HIV and AIDS Funding and
Client Coverage,, which was released at a June 2005 hearing,
16 of 29 states with EMAs are already at or below overall per
capita funding.
The states that currently contain EMAs account
for 87% of living AIDS cases and Title I EMAs account for more
than 70% of all living AIDS cases. Therefore, any response must
ensure that the public health systems in those states are not
destabilized by changes to formulas. Simply redirecting funds
will disadvantage urban and rural people living with HIV/AIDS
who currently receive services in favor of other rural and urban
people living with HIV/AIDS in other states. Increased funding
is necessary at both the state and EMA level to ensure proper
coordination and an effective response to the epidemic, particularly
in areas of high concentration.
AIDS Action supports distribution of funds
based on a severity of needs approach pending the availability
and analysis of more complete data and the actual development
of a comprehensive severe need index. Any changes which
occur should ensure that rural residents receive additional
help while not diminishing urban residents’ access to care and
treatment. Such changes should support local decision making.
Such a system of distribution should cross all Titles including
Titles III and IV, which are a significant part of many state
funding portfolios.
ADAP funding should not be included in a system
which distributes funds based on severity of need. ADAP should
be moved from Title II and placed in its own Title and made
portable for eligible beneficiaries as described in AIDS Action’s
ADAP proposal. Finally, it must again be noted that new funding
is crucial to the success of CARE Act programs.
3. People living with HIV/AIDS must
be able to access a full range of treatment and care. Once they
have enrolled in a system of care, people living with HIV/AIDS
must be maintained in care.
AIDS Action agrees with the conclusions of
the Administration and with the findings of the Institute of
Medicine (IOM) report, Securing the Legacy of Ryan White,
that the introduction of Highly Active Anti-Retroviral Therapy
(HAART) in 1996 has resulted in tremendous changes in the system
of care. Funding has shifted from providing short term, end-of-life
care toward long-term, life prolonging drugs, medical care,
treatment, and support services over the course of a lifetime.
The Health Resources Services Administration
(HRSA) has defined “unmet need” as people living with HIV/AIDS
who know their HIV positive status but who are not accessing
regular care and treatment. They estimate that more than 250,000
people meet this definition of unmet need in the United States.
The CARE Act must work to ensure that these individuals are
able to access care. Additionally, treatment of this infectious
disease must be aimed at ensuring the health of the person living
with HIV/AIDS by avoiding the creation of new drug-resistant
strains of HIV. To do so, care service providers must work to
ensure adherence to treatment protocols. People living with
HIV/AIDS must be 95% adherent to treatment to ensure that drug
resistance is not developed.
The IOM report also concludes that HIV/AIDS
care is subject to regional variability, which is compounded
by differing levels of access to private and public insurance
programs. Local jurisdictions must therefore have the capability
of flexibly providing a full range of care and treatment that
best fits the needs of people living with HIV/AIDS within that
jurisdiction. Creating effective local services necessarily
requires highly trained clinicians and service providers. Local
communities can best access targeted, multi-disciplinary training
for HIV treatment and care providers through the nation’s AIDS
Education and Training Centers (AETCs), support for which should
remain an important part of the Act.
The Administration has proposed creating standards
for core medical services. AIDS Action supports prioritizing
medical care and treatment defined broadly with the ability
of local jurisdictions to have flexibility to provide this care.
AIDS Action supports ensuring that local
jurisdictions have reached sufficient levels of basic HIV care
with connected systems of care, such as Traditional medical
services, treatment for substance abuse and mental health, nutritional
services, transportation and helping people living with HIV/AIDS
access related services such as housing. In reality, the
issues faced by people living with HIV/AIDS are not solely driven
by HIV disease; they are driven also by poverty, racism, gender
discrimination, homophobia, mental illness and substance abuse.
Consequently, services must be designed not merely to enroll
people living with HIV/AIDS in care, but also to maintain them
in care and to help ensure adherence to their treatment regimen
in relationship not only to the disease but also to each of
the other drivers that people living with HIV face.. It is important
to note that it is impossible to “silo” HIV/AIDS care by creating
a single system of delivery.
The core service issue has revealed that there
may be some jurisdictions that are not meeting basic medical
requirements for people living with HIV/AIDS. AIDS Action
therefore recommends that state and local jurisdictions demonstrate
that they are providing medical care that meets the needs of
all people living with HIV/AIDS, including access to medications.
If such jurisdictions are not meeting the requirements
for medical care, they must be required to ensure that medical
services are the highest priority for funding. This should not
be the sole purpose of all funds. Even in a jurisdiction not
meeting basic medical needs, effort must be put into enrolling
and maintaining people living with HIV/AIDS in services. If
a jurisdiction can demonstrate that funds are being provided
for medical services, then such a jurisdiction should be allowed
to use funds to provide greater access, enrollment, and maintenance
in care and treatment. AIDS Action supports the ability
of states and communities to build comprehensive systems which
provide and maintain access to care, support, and optimal treatment
for people living with HIV/AIDS.
Finally, effective services depend on effective
and efficient administration, evaluation, planning, and quality
assurance. In some of the CARE Act Titles, funding allocations
for these functions are too low. AIDS Action urges Congress
and the Administration to ensure that caps on funding are consistent
across all Titles and that the caps allow sufficient funding
and flexibility to ensure that CARE Act services are provided
effectively and efficiently.
4. CARE Act funding formulas should
be based on living HIV (which also includes AIDS) cases.
AIDS Action supports the need for HIV
reporting with the highest level of confidentiality by 2007.
We urge Congress and the Administration to include sufficient
funding and technical assistance resources to implement fully
this transition without jeopardizing current delivery systems
of care. Additionally, as states adopt reporting systems, a
transition period using living HIV estimates must be utilized
until these systems mature and are accepted as accurate by the
CDC. Prior to completing the transition to living HIV and
AIDS cases, AIDS Action recommends that the CARE Act make funding
allocations based on living AIDS cases.
5. Local control must continue to
be a priority.
Community planning has been an important part
of the CARE Act since its inception in 1990. Title I planning
councils have had the mandated authority to set priorities for
the use of Title I funds while Title II planning consortia have
played a major role in determining priorities. This requirement
has enabled diverse segments of the community, and most especially
people living with HIV/AIDS, to be part of the decision making.
Community input can best reveal local health care disparities
that are invisible at the state and federal level. Local needs
assessment processes, such as focus groups of CARE Act clients,
town hall meetings with disproportionately impacted communities,
epidemiologic profiles, and key informant interviews with health
care providers are essential to effective community planning
for services. Local planning must continue to be a part of the
Ryan White CARE Act, and people living with HIV/AIDS must continue
to be a part of local planning councils or other mechanisms
for providing input.
6. Funding for the Ryan White CARE
Act must be increased.
Funding must parallel system restructuring
and enhancement. The Administration and others have stated that
it is important to keep the reauthorization and the appropriations
process separate. However, many of the Administration’s proposals
will make valuable contributions only if they are properly funded.
AIDS Action has recommended increasing ADAP funding by $720
million in FY2006 with annual increases of $100 million for
the life of the reauthorization. Such funds would enhance the
portability of ADAP along with access to treatment and care
across state lines (now underscored by the forced evacuation
of people living in New Orleans due to Hurricane Katrina to
be a particularly vital issue for people living with HIV/AIDS).
AIDS Action supports routine HIV screening,
particularly for high risk populations. HIV screening is
an initial evaluation of typically asymptomatic individuals
to detect those with a high probability of having or developing
HIV disease. In contrast, HIV testing requires a trained health-care
worker to draw a blood sample, typically in a clinical setting.
The blood is subsequently tested in a clinical laboratory. If
HIV-specific antibodies are detected, then the blood is subjected
to confirmation tests.
Screening must become a routine part of general
medical care, whether a patient is in a public health clinic
or a private doctor’s office. However, routine testing in medical
settings would be prohibitively expensive and would be likely
to have a low yield. Testing of just 100,000 people is estimated
to cost up to $5,000,000 and would likely identify an HIV/AIDS
diagnosis in fewer than 1,000 people. The cost of diagnosing
125,000 people (just one half of the people in the U.S. who
are estimated to be living with HIV/AIDS) is more than $625,000,000.
Given that the CARE Act’s first duty must be to ensure that
people living with HIV/AIDS have access to treatment and care,
AIDS Action opposes re-purposing current CARE Act funds to testing.
Although routine screening should be offered
to those at high or continued risk, universal testing is not
consistent with the principle of serving the neediest first.
It is important to develop a program of screening to ensure
that populations which are most likely to be at risk for HIV/AIDS,
or who would most benefit from treatment (such as pregnant mothers),
are given first access to tests. Individuals must be clearly
informed of their right to opt out of tests, and all patients
must be assured of confidentiality. People who take such tests
must also have access to counseling and everyone who tests positive
must be given access to care and treatment. AIDS Action, along
with member organizations Urban Coalition for HIV/AIDS Prevention
Services (UCHAPS) and the AETCs, will provide technical assistance
and expertise in this area.
Finally, AIDS Action restates the three major
issues which have guided our proposals in the Joint Policy and
ADAP recommendations and in this document. The Ryan White CARE
Act must ensure that the needs of people living with HIV/AIDS
are met. It must ensure that services adapt to changes in the
treatment, transmission and epidemiology of HIV disease. Finally,
it must ensure that the treatment and care systems created by
the CARE Act and which serve individuals living with HIV/AIDS
are not unnecessarily destabilized. Changes guided by these recommendations
will produce a more effective, efficient, and equitable system
of HIV/AIDS treatment and care.
