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An Overview of Key Changes to the Ryan White CARE Act

Adopted in the Ryan White CARE Act Amendments of 2000

Legislation reauthorizing the Ryan White CARE Act (S. 2311) unanimously passed both houses of Congress on October 5, 2000 and was signed into law by President Clinton on October 20th. Enactment of S. 2311 guarantees uninterrupted federal support for medical services for low-income, uninsured and underinsured people living with HIV disease. The former CARE Act legislation expired on September 30, 2000.

This document provides a general overview of the key changes to the CARE Act that are included in S. 2311. The complete text and additional legislative information regarding the final version of the CARE Act can be found on "Thomas, Legislative Information on the Internet" at thomas.loc.gov. If you would like additional information regarding reauthorization of the CARE Act, please contact the San Francisco AIDS Foundation Public Policy Department at 415-487-3080.


Common Themes Throughout the CARE Act Amendments

  • Improving Quality of Care: Adopts measures to ensure that medical services funded by the CARE Act are consistent with the most recent U.S. Public Health Service (PHS) HIV treatment guidelines and that grantees implement improvements in access to and quality of medical services.

  • Improving Collaboration between Medicaid and State Children’s Health Improvement Programs (SCHIPs): Requires states and eligible metropolitan areas (EMAs) to establish formal linkages with these programs.

  • Enhancing Access to Early Intervention Services: Supports service funding, program linkages and co-location of HIV testing and counseling services and CARE-funded medical care in an effort to reduce the length of time between HIV diagnosis and entry into care.

  • Reaching Individuals with HIV Disease Who Are Not Receiving Care: The Health Services and Resources Administration (HRSA) will work with the Center for Disease Control and Prevention (CDC) to develop a method to estimate the number of people living with HIV disease who are not in care. State planning consortia and Title I planning councils will be required to use this method to identify individuals living with HIV currently not receiving care and to prioritize funding for services to these targeted individuals.

  • Enhancing Existing Quality Management: Requires that CARE Act grantees establish or enhance quality management systems for CARE Act funded programs. These systems must include quality of care standards (Public Health Service HIV treatment guidelines as a minimum). The new law allows Title I and Title II grantees to expend 5% (but no more than $3 million) of the annual grant on such efforts.

  • Linking Support Services to Medical Care: Requires that support services funded under the CARE Act facilitate, enhance, support, or sustain the delivery, continuity, or benefits of health services for individuals or families with HIV. All CARE providers will be required to have formal medical health care referral relationships, regardless of the service they provide.


Key Changes to CARE Act by Title

The following guide highlights the key changes adopted in the Ryan White CARE Act reauthorization amendments by CARE Act Title.

Title I: Funding to High-Incidence Eligible Metropolitan Areas (EMAs)

1. Planning Councils

The new Act requires that planning councils include HIV prevention providers, housing and homeless service providers, and HIV positive former prisoners or their representatives. These seats are in addition to the current list of required memberships, which include social service, mental health and substance abuse providers, public health agencies, hospital and/or health care planning agencies and affected communities including historically underserved groups. One-third of planning council members must now be HIV infected or affected family members of Title I service consumers who are unaffiliated with any entity that receives Title I funding (i.e., these consumers cannot be officers, employees, or consultants of such entities). Planning Council meetings must comply with Federal Advisory Council Act (FACA) regulations that require all meetings of the planning council to be open to the public and be conducted only after proper public notice. The Planning Council must also establish a process that provides public access to non- personnel related materials distributed to planning council members, including reports, meeting minutes, meeting agenda and any other documents distributed to the full planning council. The Department of Health and Human Services (HHS) will also be required to provide Title I communities with materials to train all planning council members.

2. Use of HIV Data in Formula Funding

Currently, amounts awarded for the Title I formula grants are calculated using a 10-year weighted AIDS case band count to estimate the number of people living with AIDS in a given area. The new law will require that the most recent year of HIV case data be incorporated into the 10-year weighted case count beginning in 2005 unless the Secretary of HHS determines that HIV case data are not yet available throughout the country. The new law also requires an Institute of Medicine study of HIV case surveillance to determine if it is adequate for use in formula funding.

3. Allowable Reductions in Title I Formula Funding (Hold Harmless Provision)

Former law limited allowable reductions in Title I formula funding to Eligible Metropolitan Areas (EMAs) by 1% per year, for a total of 5% during the five-year period the legislation was authorized. The CARE Act Amendments of 2000 adopt a graduated reduction of Title I formula funding as follows: 2% in the first year the hold harmless is needed, 3% in the second year, 3% in the third year, 3% in the fourth year, and 4% in the fifth year, for a total maximum reduction of 15% over the five years. If HIV data are incorporated into the formula calculation for Title I funding in FY 2005, the reduction for the fifth year will be lowered to 2%, for a total reduction of 13%. Reductions are based on the affected EMA’s Title I formula allocation from the preceding fiscal year. The graduated reduction begins anew if there is an intervening year in which an EMA does not need the hold harmless provision.

Title II: Funding to States for Medical and Support Services (including the AIDS Drug Assistance Program)

1. Use of HIV/AIDS Data in Formula Funding

The changes in the formula related to the use of HIV data to determine Title II awards are identical to the changes included in Title I (see #2 above).

2. Allowable Reductions in Title II Funding

The new law maintains the provision that ensures that no state will suffer more than a one percent cut per year in non-ADAP Title II base funding. This means that states will receive no less than 99% of their base year award in the first year. It will continue to allow only an additional 1% reduction per year in the following years (for a maximum total reduction of 5% over the five years of the reauthorized Act).

3. Supplemental Grants for "Emerging Communities"

The CARE Act Amendments of 2000 create a new supplemental grant to states to provide services to "emerging communities" that are not currently eligible for Title I funding. This provision will not take effect until Title II appropriations (exclusive of ADAP-specific funds) exceed FY 2000 funding levels by at least $20 million. After this threshold has been met, fifty percent of any Title II funds above the FY 2000 funding level will be set aside to fund the new supplemental grants. Once this funding measure has been triggered, HHS will be required to ensure that at least $10 million is made available for these "emerging communities" every year. To be eligible, communities must have a population base of 500,000 and have reported between 500 and 1,999 AIDS cases in the past five years. In FY 2005, if HIV data are used in addition to AIDS data to calculate the formula allocations in Title I and II, the same will be used to calculate eligibility for the Title II supplemental.

Eligible areas with between 500 and 999 reported AIDS cases over the most recent five year period shall receive a minimum grant of $5 million or 25% of new Title II funds. Eligible areas with between 1,000 and 1,999 reported cases shall receive a comparable allocation of $5 million or 25% of new Title II funds.

4. Competitive Grants for ADAP Funds

The Act creates a new provision that sets aside three percent of all Title II ADAP-specific funds for a competitive grant program to increase access to HIV drugs for individuals who live in selected states with (a) demonstrated need for improved drug access, and (b) a significant number of consumers living at or below 200% of the federal poverty level. The provision requires that no state can receive a reduction in ADAP funds as a result of this new set-aside (i.e., holds states harmless from reduction that could occur due to this program). Eligible states must match the award at a rate of one dollar for every four federal dollars that they receive. States must also agree not to impose limitations on eligibility requirements or scope of benefits that are more restrictive than such requirements that were in effect on January 1, 2000. The criteria for awarding of grants will be developed by the Secretary of HHS.

5. Partner Notification Programs

The law creates a new $30 million annual authorization that would enhance existing partner notification, counseling and referral service programs. To be eligible, states must implement partner notification programs and reporting of those who test HIV-positive to the state public health officer in a manner recommended and approved by the CDC. Grant preference will be given to states with HIV reporting systems that are "sufficiently accurate and reliable" for Title I and Title II formula allocation.

6. Pregnancy and Perinatal Transmission of HIV -- Mandatory Testing of Newborns

The new law authorizes $30 million to address the issue of perinatal HIV transmission. The former grant program was funded through a $10 million annual allocation from the budget of the CDC. New language establishes a $30 million authorization of which $10 million will continue to be transferred from the CDC and the other $20 million will be subject to annual appropriations. The $20 million authorization will be available each year to (a) states with a mandatory testing requirement for all newborns or for newborns for whom the mother’s HIV status is unknown, or (b) states demonstrating the most significant reductions in the rate of new cases of perinatal HIV transmission. A special rule for FY 2001 will reserve a minimum amount ($4 million) from new Title II funds for this purpose.

An increasing proportion of this funding (i.e., the amount appropriated in a fiscal year above the original $10 million) will be provided to states with mandatory testing requirements. The specific proportions are 33 percent in FY 01, 50 percent in FY 02, 67 percent in FY 03, and 75 percent in FY 04 and FY 05. The remainder of these funds will be provided to states based on such criteria as reductions in perinatal transmission and the incidence of HIV and AIDS among women of childbearing age. Individual grants to states from this set- aside will not exceed $4 million.

The Institute of Medicine will be asked to assess the number of HIV-positive infants born and the possible barriers that prevent the mother’s obstetrician from offering her an HIV test in each state, and make recommendations to each state on methods to reduce the incidence of perinatal HIV transmission. In response to these recommendations, each state must submit a report to HHS by 2004 that describes the actions it has taken toward meeting the recommendations.

Title III: Direct Grants to Organizations for Early Intervention and Primary Care Services

1. Preferences in Awarding New Title III Funds

The Secretary will give grant preference in two tiers to service providers who (1) provide early intervention services in rural areas and (2) provide early intervention services in areas that are underserved.

2. Increasing the Allowable Administrative Costs for Title III

The new law increases the amount of Title III grants that can be spent on administrative costs from 7.5% to 10% to more accurately reflect the actual administrative costs associated with service provision.

3. Establishing New Title III Capacity Development Grants

Capacity development grants of up to $150,000 will be created for rural and/or underserved areas to expand capacity, preparedness, access to and expertise in the delivery of HIV primary care in these areas. These grants are not to exceed three years in duration.

4. Partner Notification & Counseling

Modifies existing Title III HIV counseling guidelines with a provision that requires providers, during post-test counseling for HIV infected individuals, to state that "it is the duty of infected individual to disclose their status" to partners and "emphasize that it is the continuing duty of the individual to avoid any behaviors that would expose others to HIV."

Title IV: Programs for Women, Infants, Children and Youth

1. Grants for Coordinated Services and Access to Research for Women, Infants, Children, and Youth

The requirement to enroll "significant numbers" of women and children in research projects is eliminated, but the new law requires that grantees provide enhanced information and education to their clients on opportunities to participate in HIV/AIDS- related clinical research. Requires the HHS Secretary, through the National Institutes of Health, to examine the distribution and availability of ongoing and appropriate HIV/AIDS- related research projects, particularly in communities that are underserved by such projects.

2. Limitation on Administrative Expenses

A new provision is included that requires the Secretary of HHS to conduct a review of the administrative and indirect costs associated with Title IV grants in an effort to establish a standard. This review is to be completed no later than 12 months after the CARE Act is reauthorized. No later than 180 days following the 12-month period for the review, HHS will be required to report on the relationship between the administrative cost of service delivery and recommend a standard for administrative and indirect costs. After this determination is completed, grantees will be required to cap administrative expenses.

Part F: Miscellaneous Provisions

1. AIDS Education and Training Centers – Prenatal and Gynecological Care

A new provision is included that requires the development and distribution of protocols for women with HIV disease, including prenatal and other gynecological care. Such treatment protocols must be developed and disseminated within 90 days of reauthorization of the CARE Act.

2. Authorizing Appropriations for Expanded Dental Reimbursement Program

The Act expands the definition of eligible dental entities to include accredited schools of dental hygiene. It also expands grants to dental schools to include those dental schools and dental hygiene programs that partner with community-based dental programs in underserved areas.

Subtitle B: General Provisions

1. Coordination of Federal HIV Programs

The law creates a new requirement that the HHS Secretary must submit a plan to Congress every two years describing barriers to HIV program integration and a strategy for eliminating such barriers and enhancing the continuity of care and prevention services.

2. Plans Regarding Release of Prisoners Living with HIV Disease

A new provision requires HHS to develop a plan for the medical case management and delivery of support services to individuals living with HIV disease who are to be imminently released from either federal or state penal systems. The plan must be submitted to Congress no later than two years after reauthorization.

3. Selected Audits

A new provision allows the Secretary of HHS to reduce the Title I or Title II grant to any grantee if it fails, in two consecutive grant years, to produce audits required of all federal grantees. Annually, the Secretary of HHS will be required to select a representative sample of grantee audits, summarize them and provide them in a report to be submitted to Congress.

4. Administrative Simplification: Coordination of Title I and Title II Grant Years

A new provision requires the Secretary of HHS, no later than 18 months after enactment of the bill, to develop a plan for coordinating the distribution of appropriated Title I and Title II funding for grant making purposes. No later than two years after the plan is submitted to Congress, the Secretary of HHS shall implement this plan regardless of any other provision of law.

5. Administrative Simplification: Biennial Application Process and Simplification

A new requirement states that no later than two years after enactment of the bill, the Secretary of HHS must determine whether the administration and efficiency of Title I and Title II CARE grants would be improved by a biennial rather than annual federal grant making process. The HHS Secretary is required to submit a plan for simplifying the process for applying for Title I and Title II funding within 18 months after CARE Act reauthorization and to implement the plan no later than two years after the plan has been submitted to Congress.

Title V: General Provisions

1. Institute of Medicine Studies

The Secretary of HHS – in conjunction with the Institute of Medicine – must complete the following studies:

Health Care Financing: Identify and provide for use by health planners epidemiological measures and their relationship to the financing and delivery of primary care and health-related support services for low-income, uninsured, and under-insured individuals living with HIV. The study will consider availability and utility of health outcomes measures, the effectiveness and efficiency of service delivery, existing and needed epidemiological data and other tools for resource planning and allocation decisions, and other relevant factors. The study will include an assessment of the financial impact of reforming the Social Security Act to provide Medicaid eligibility to those in earlier stages of HIV disease.

State Surveillance Systems: The study must include a determination of whether the HIV surveillance system of each of the states provides adequate and reliable information on the number of individuals in that state that are diagnosed with HIV and whether such information is sufficiently accurate to be used for formula funding purposes. Recommendations will be issued to those states where the reporting mechanism is deemed insufficient.

The study on state surveillance systems must be completed no later than three years from the date of enactment. The study on health care financing must be completed within two years of enactment.

2. Development of Rapid HIV Test

The NIH is directed to expand, intensify and coordinate research to develop an HIV test that can be rapidly administered and the results rapidly obtained. Within 90 days after the CARE Act is reauthorized, the Secretary of HHS must submit a report to Congress on the progress made towards (and the barriers to) the development and availability of such rapid HIV tests. As soon as commercial distribution of a rapid HIV test occurs, the Secretary of HHS will establish guidelines that include recommendations regarding the availability of rapid HIV tests for administration to pregnant women who are in labor (or in the late stages of pregnancy) and whose HIV status is not known to the physician.

Page last updated 2 November 2000


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