GMHC'S Response
to the Federal Government's Proposed Ryan White CARE Act
Reauthorization
Principles
In his State of the Union Address, President Bush called for the
reauthorization of the Ryan White Comprehensive AIDS Resources
Emergency (CARE) Act based on the principles of focusing Federal
resources on life-extending care, ensuring flexibility by targeting
resources to address areas of greatest need, and achieving results.
On July 27, the Secretary of Health and Human Services, Mike Leavitt,
released the administration's specific principles for reauthorizing
the CARE Act. This document re-states the principles and gives
GMHC's response to each principle.
The Ryan White CARE Act is a comprehensive approach to providing
medical care, antiretroviral treatments, and counseling and testing
for those in greatest need of HIV/AIDS assistance. The legislation
must be reauthorized every five years, and the next reauthorization
is set for September 2005.
Serve The Neediest First
Establish Objective Indicators To Determine Severity Of
Need For Funding Core Medical Services. Those in greatest
need of HIV/AIDS assistance, including African-American and low-income
individuals, have the fewest resources available to meet them.
There are also significant differences in access to HIV care
throughout the country. Recognizing the circumstances that contribute
to different care needs is an important part of assisting those
hardest to reach. To address the needs of these populations,
the Secretary of Health and Human Services (HHS) would develop
a "severity of need" for core services index (SNCSI). This index
would be based upon objective criteria and be focused on core
services. It would take into account not only HIV incidence,
but levels of poverty, availability of other resources including
local, state, and federal programs and support, and private resources.
This SNCSI would determine formula allocations among states and
eligible metropolitan areas. When combined with a requirement
of maintenance of effort on the part of state and local governments,
the SNCSI would address the differences in HIV/AIDS care.
GMHC Response: GMHC recognizes the need to
direct resources to those most in need and supports developing
criteria to assess the severity of need. However GMHC is concerned
that the administration's principles recognize a much narrower
assessment of severity of need than is offered by the current
Act (2000 amendments to the Ryan White CARE Act of 1990). For
example, the president's principles considers only poverty a
significant comorbidity that complicates HIV care, whereas the
current Act takes into account sexually transmitted diseases,
substance abuse, tuberculosis, severe mental illness, and homelessness.
The exclusion of these co-morbidities will limit the ability
of large urban areas to describe adequately the severity of their
need. Rather than restricting the criteria for measuring severe
need, GMHC believes this list of significant factors should be
retained and expanded by recognizing hepatitis C infection as
an important emerging factor in defining severe need.
GMHC is also concerned that a severity of needs index that
looks to HIV incidence but not seroprevalence will disadvantage
jurisdictions that have made notable progress in preventing new
infections as well as those with a high concentration (density)
of HIV/AIDS cases. Prevalence is the relevant indicator of need
for HIV/AIDS services. Furthermore, the suggested formula to
calculate the index will penalize those areas with decreasing
incidence, which is a sign of successful prevention efforts.
GMHC is also very concerned that factoring in the availability
of other resources, including local, state, other federal support,
and private resources, would, in effect, reward jurisdictions
that have done a poor job of using available resources and penalize
those that have done a good job of marshalling resources in response
to the HIV/AIDS epidemic.
Focus on Life-Saving and Life-Extending
Services
Establish A Set Of Core Medical Services. It
is essential to identify the basic, primary medical care and medication
needs of individuals with HIV/AIDS.
GMHC Response: GMHC supports defining "core
medical services" as those that facilitate access to medical
care and medications and support maintenance of medical care
and adherence to drug treatments. GMHC recommends retaining the
description of outpatient and ambulatory support services that
are included in the current Act. A definition of "core medical
services" that does not include essential support services could
result in a drastically lowered priority for 40% of the New York
EMA's Year 16 spending plan for New York City's use of CARE Act
funds, to the point that many of these services likely would
be eliminated from the plan.
Require That 75 Percent Of Ryan White Funds In Titles
I-IV Be Used For Core Medical Services So That Federal Funds
Are First Used To Support Life-Saving Services For The Most Impoverished
Americans. A person living with HIV/AIDS receives benefits
from a range of services. Some of these are clearly life prolonging
and essential to maintaining physical and mental health; others
are not. Services that are essential (core services) should be
prioritized for Federal funding.
GMHC Response: GMHC opposes mandated percentage
set-asides for specific services. GMHC believes that the allocation
of funds to services and the mix of services should be locally
defined based on the local jurisdiction's needs assessment.
Maintain A Federal List Of AIDS Drug Assistance Plan (ADAP)
Core Medications. The HHS Secretary will develop and
maintain a list of core ADAP drugs based upon those included
in the U.S. Department of Health and Human Service's Public Health
Service HIV/AIDS Clinical Practice Guidelines for use of HIV/AIDS
Drugs, drugs needed for the treatment and prophylaxis of opportunistic
diseases and drugs needed to manage symptoms associated with
HIV infection. These medications should be prioritized for Federal
funding.
GMHC Response: GMHC strongly supports a comprehensive,
minimum drug formulary for ADAP programs based upon the Public
Health Service's guidelines for the use of HIV/AIDS drugs. GMHC
strongly believes, however, that a minimum ADAP formulary should
be a floor and not a ceiling. States should be allowed to use
their CARE Act funds to enrich the minimum formulary with other
life saving drugs and medications.
Increase Prevention Efforts
Require States To Implement Routine Voluntary HIV Testing
In Public Facilities And Work With Private Healthcare Providers
To That Same End. With an estimated 250,000 HIV-positive
individuals unaware of their HIV-positive status, testing is
a key element in prevention efforts. States will be encouraged,
upon receipt of their Ryan White allocations, to adopt various
important HIV prevention strategies, such as routine opt out
HIV testing, contact tracing, and the recommendations of the
CDC Advancing HIV Prevention Initiative.
GMHC Response: GMHC supports efforts to make
offering voluntary HIV counseling and testing a routine component
of medical care. However, GMHC opposes an "opt out" approach
to HIV testing and any compromise of written informed consent.
GMHC opposes requiring states to adopt other specific HIV prevention
strategies, including contact tracing and the recommendations
of the CDC's Advancing HIV Prevention Initiative, as a condition
to receiving CARE Act funds.
Increase Accountability
Maintain The Current Statutory Requirement That All States
Submit HIV Data By The Start Of Fiscal Year 2007. Having
a full picture of the scope of HIV is critical to successful
care and treatment programs that prevent people from advancing
to AIDS; because newer infections are increasingly likely to
take place among minorities, this provision will better target
funds to heavily impacted communities and aid in getting people
into care sooner.
GMHC Response: This principle reflects the
joint policy recommendations of AIDS Action Council and the CAEAR
Coalition, which GMHC supports.
Hold Grantees Accountable For Reporting On System And
Client-Level Data And Progress. Accurate counts of those
served and those receiving core services will help better serve
those in need, as well as enable caregivers to define performance
measures and evaluate progress.
GMHC Response: This principle reflects the
joint policy recommendations of AIDS Action Council and the CAEAR
Coalition, which GMHC supports.
Maximize Investments Through Stronger And More Specific
Payer-Of-Last-Resort Provisions And Require Grantees To Seek
Alternative Payment Sources Before Using Ryan White Funds. The
Ryan White program is to be used as a last resort for only HIV-positive
individuals who are not able to access medical care through other
means. To ensure that this is the case, other payers of care
need to be exhausted before turning to Ryan White funds. HHS
would conduct regular audits to ensure RWCA funds are used as
the payer of last resort. Federal and state investments would
be directed to fill gaps in the existing health care system rather
than duplicate existing public or private activities.
GMHC Response: GMHC recognizes that the CARE
Act, from its inception, was intended to be the "payer-of-last-resort" and
believe it has served this purpose well. In the absence of evidence
of wide scale abuse of this established principle, GMHC is concerned
that an aggressive new emphasis on auditing could create additional,
costly, administrative burdens on grantees and providers.
Require State And Local Care Delivery Coordination. A
coordinated effort between the states, cities, and other care providers
is essential to effective, comprehensive care and prevention services.
HHS would consult with state AIDS officials on discretionary grants
and would provide to state AIDS officials all information necessary
for states to coordinate HIV care and treatment with other Federally
funded projects to maximize efficiency and effectiveness of AIDS
services.
GMHC Response: GMHC views this principle
as being consistent with the joint recommendations of AIDS Action
Council and CAEAR regarding enhancing federal coordination. Concern
is raised, however, that the administration's principles do not
address federal coordination directly. GMHC also cautions that
state and local coordination should not result in compromising
local decision-making.
Eliminate The Double Counting Of HIV/AIDS Cases Between
Major Metropolitan Areas And The States. Currently,
in major metropolitan cities, AIDS cases are counted once as
part of a city count and a second time in the overall state count.
Therefore, HIV/AIDS cases in major metropolitan cities are counted
twice. In an effort to ensure that every AIDS case is counted
equally and to make sure that Federal funds are distributed fairly
to those most in need of assistance, we must eliminate this double
counting.
GMHC Response: GMHC strongly opposes this
principle based on its faulty assumption of "double counting" of
HIV/AIDS cases in Title I areas. Title II grants, which would
be affected by this principle, serve purposes that are separate
from Title I grants. Title II grants should not be reduced as
a result of a state having one or more Title I areas. The legitimate
goal over reducing funding disparities in CARE Act funding must
not be accomplished by destabilizing existing care infrastructures.
Eliminate Current Provisions That Entitle Cities To Be "Held
Harmless" In Funding Reductions. Today, because of the
way the existing formulae count the number of AIDS cases (by
including cases spanning the last 10 years), metropolitan areas
with newer epidemics receive disproportionately less than those
with more longstanding problems. In order to more accurately
reflect the current status of the epidemic, we must eliminate
provisions that entitle cities to be "held harmless" in funding
reductions.
GMHC Response: GMHC is strongly opposed to
the destabilization of networks of care that would result from
a sudden elimination of the "hold harmless" provision. Any effort
to change the Act's current provision should be phased in over
the reauthorization period.
Increase Flexibility
Allow The Secretary Of HHS To Redistribute Unallocated
Balances Based On Need As Determined By Severity Of Need Measures. To
maximize all Ryan White funding, unspent funds from Titles I
and II would revert to the Secretary of HHS for discretionary
reprogramming to state ADAP programs with the greatest need.
GMHC Response: GMHC is mindful of the funding
crisis faced by many ADAP programs, which has forced some states
to institute waiting lists and other cost containment initiatives.
GMHC is concerned, however, that this principle, if enacted,
could remove the incentive for states to utilize state and local
resources in addressing the HIV/AIDS epidemic in their areas.
Allow Planning Councils To Serve As Voluntary And Advisory
Bodies To Mayors. State and local officials need maximum
flexibility to respond to the epidemic and to direct funding
to those in greatest need. Planning councils would be structured
at the discretion of the mayor; could not have conflicts of interest;
and would no longer be required to set priorities for spending.
GMHC Response: GMHC strongly opposes stripping
Title I planning councils of their authority to set priorities
for the allocation of Title I funds. Planning councils offer
historically marginalized populations, including people living
with HIV/AIDS, women and people of color, a meaningful role in
this critical area of decision making.
TAKE ACTION!
Click here for a sample letter that you can send to either Senator Clinton or Senator Schumer to
express your thoughts on the Administration's
Ryan White CARE Act Reauthorization Principles. |
© 2005 Gay Men's Health Crisis
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