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Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act

Reauthorizing the Ryan White CARE Act in 2005: Policy Principles From AIDS Alliance

March 2005

Defining Our Policy Priorities

AIDS Alliance engaged in more than a yearlong community process to develop our policy principles for CARE Act reauthorization. In order for AIDS Alliance to speak on behalf of the Title IV community of consumers and providers, we first engaged in several forums to hear directly from the Title IV community.

In early 2004, the executive director engaged in a series of "Town Hall Meetings" across the country to hear from Title IV consumers and providers what's working well with Title IV (and the CARE Act as a whole) and what needs improvement. The executive director visited nine cities and heard from hundreds of meeting participants. In addition, AIDS Alliance held two forums at our annual conference, Voices. One forum was for Title IV project directors to communicate their concerns, and another forum was for consumers. Finally, board members convened regional conference calls of project directors to discuss programmatic specifics about the structure of the CARE Act.

The concerns from each of those meetings, forums, and calls as identified by consumers and providers were compiled, and the government affairs committee of the board synthesized those concerns into 10 policy priorities for CARE Act reauthorization. The full board then adopted the principles as the basis for AIDS Alliance reauthorization efforts. The 10 principles do not speak to the entirety of the CARE Act but, rather, focus on Title IV and issues most relevant to women, children, youth, and families affected by HIV/AIDS. For some of these principles, we have developed specific legislative language we encourage.

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Ten Policy Principles and Justifications

    Title IV Issues:

  1. Title IV should be maintained as an independent program, and "family-centered care" must be reemphasized.

  2. All populations of HIV-positive youth should be prioritized and provided outreach, care, and prevention services, with emphasis on retaining youth in care.

  3. Access to HIV research opportunities for women, infants, children, and youth through Title IV should be maintained, with increased Title IV grantee participation in research priority-setting.

  4. Title IV's unique role in HIV prevention should be affirmed.

  5. Negative ramifications from an administrative cost limitation on Title IV projects must be avoided.

  6. Access to medical care and case management support services for HIV-positive pregnant women to retain them in care and help prevent MTCT should be enhanced, especially for hard-to-reach populations of women.

    CARE Act Issues:

  7. The CARE Act's basic four-title structure should be preserved.

  8. Prioritization of care services for women, infants, children, and youth in Titles I and II should be maintained.

  9. Collaboration and communication should be expanded across all titles of the CARE Act and between other federal agencies including HRSA, CDC, SSA, CMS, ACF, SAMHSA, NIH, VA, and HUD.

  10. As part of a comprehensive approach to preventing mother-to-child HIV transmission (MTCT), voluntary HIV testing protocols for pregnant women, including during labor, should be promoted, and enhanced surveillance of MTCT should be maintained.


    Title IV Issues

  1. Title IV should be maintained as an independent program, and "family-centered care" must be re-emphasized.

    The mission of Title IV projects is unique and specific. Title IV cannot be collapsed or combined into any other part of the CARE Act without damaging systems of care that prioritize families.

    The existing programs have been very successful in reaching women, children, youth, and families. This program must be maintained independently. In addition, though family-centered care models are widely in use in Title IV, they are not explicitly recognized within the legislation. Recognizing the special nature of considering the whole family to be the client, rather than infected individuals only, is critical to maintaining the quality of services.

    Further, Title IV must be prioritized in the appropriations process and given adequate funds for existing projects to grow to meet demand and for new projects to be established.

    Specific legislative proposal: Section 2671 of the Public Health Service Act (42 U.S.C. 300ff- 71) is amended:

    (1) in subsection (d)(1), by striking "for" and inserting "coordinated, family-centered care, including"; and

    (2) in subsection (k), by striking "1996 through 2000" and inserting "2006 through 2010."17

  2. All populations of HIV-positive youth should be prioritized and provided outreach, care, and prevention services, with emphasis on retaining youth in care.

    All Title IV grantees focus on bringing youth with HIV into care and retaining them in care. As discussed in the "special needs" section of this paper, there are myriad challenges facing HIV-positive young people. Case-finding and bringing them into care is highly challenging, but many Title IV projects have developed innovative techniques to accomplish this goal, including the deployment of peer advocates and outreach workers.

    While all Title IV grantees work with HIV-positive youth, in 2000, HRSA launched an initiative to create adolescent-specific Title IV grants. There are now 17 projects specifically funded to focus entirely on HIV-positive adolescents. These programs have built new, innovative, youth-focused systems of care. The CARE Act should reflect the work being done both generally by Title IV projects and the work being done by these adolescent-focused projects. New resources must be added through the appropriations process to expand efforts targeted to adolescents throughout Title IV and through the adolescent initiative programs.

    Specific legislative proposal: Section 2671(a) of the Public Health Service Act (42 U.S.C. 300- ff-71(a)) is amended by adding at the end thereof the following:

    "(3) In the case of youth with HIV, providing health care and other supportive services designed to recruit and retain youth in care. For purposes of this paragraph, the term 'youth with HIV' means individuals ages 13 through 24 infected through all modes of transmission including mother-to-child."

  3. Access to HIV research opportunities for women, infants, children, and youth through Title IV should be maintained, with increased Title IV grantee participation in research priority-setting.

    In the 2000 reauthorization, Congress amended Title IV to broaden the role of grantees in clinical trials and other kinds of research. Since the amendment, Title IV programs have continued to educate clients and link them to research.

    As care providers for women, children, youth, and families affected by HIV/AIDS, Title IV grantees have unique insight on the day-to-day needs of these individuals and should be a resource for NIH on research priorities for these groups. Congress should help link Title IV grantees to the research agenda-setting for NIH research on women, children, youth, and families affected by HIV/AIDS. In addition, ongoing technical assistance activities for grantees funded through Title IV should be expanded to assist programs and clients in accessing research planning bodies.

  4. Title IV's unique role in HIV prevention should be affirmed.

    Title IV provides prevention services as an essential component of family-centered care, including: (1) HIV prevention as part of case-finding to identify HIV-positive people; (2) prevention of mother-to-child HIV transmission; and (3) providing primary and secondary prevention services to infected and affected family members.

    In particular two critical populations served by Title IV -- HIV-positive youth and HIV-positive pregnant women -- are routinely engaged in care through avenues requiring HIV prevention education and case-finding. Identifying HIV-positive youth most frequently happens through street outreach to high-risk young people where HIV prevention and HIV testing services are offered. With HIV-positive pregnant women, the standard of care instructs providers on antiretroviral treatment necessary to prevent MTCT.

    These HIV prevention activities remain appropriately within Title IV, given its unique constituencies.

  5. Negative ramifications from an administrative cost limitation on Title IV projects must be avoided.

    Providing comprehensive, coordinated, and culturally competent family-centered care requires greater expenditures on administrative and coordinating functions. At present, Title IV is the only title of the CARE Act not subject to a cap on administrative expenses. This leeway provides for the greater flexibility required in administrating networks of services to ensure that the needs of families affected by HIV/AIDS are met appropriately.

    In the 2000 reauthorization, Congress authorized the Secretary of Health and Human Services to study the impact of capping Title IV's administrative expenditures, specifically to examine the definition of "administrative expenditure" and to measure the impact of capping such expenditures on services provided to consumers. HRSA commissioned such a study and, based on that data, proposed capping Title IV's administrative expenditures.

    However, significant disagreement existed over whether the data from the HRSA study actually led to the conclusion that limiting Title IV's administrative expenditures would increase the amount of funds available to provide services. Data inconsistencies in the study regarding what constitutes an "administrative expenditure," specifically problems around the inclusion or exclusion of indirect costs in such calculations, led Congress to conclude in the fiscal year 2004 omnibus appropriations bill that the data was not adequate to impose a cap at that time.18 Congress directed HRSA to re-evaluate the data, and ensure that definitions are precise and that any proposed limitation would not harm Title IV grantees' ability to provide comprehensive, family-centered care.

    Recent appropriations cycles have left Title IV with fewer resources than in previous years. However, we agree with Congress that the data presented thus far by HRSA does not clearly show that reducing administrative costs would increase the amount of services available.

    HRSA must comply with the 2000 Amendments to the CARE Act and produce quality data for this study. Barring such a development, Congress must insist, as the appropriations report stated, that HRSA be prevented from implementing such a cap until it can be shown that it would not harm grantees' ability to provide quality, comprehensive, family-centered care.

  6. Access to medical care and case management support services for HIV-positive pregnant women to retain them in care and help prevent MTCT should be enhanced, especially for hard-to-reach populations of women.

    As described above, reductions in MTCT are one of the few great success stories of HIV prevention. No other category of HIV transmission has achieved an eight-to-ten-fold reduction in the United States (from over 2,000 per year in the mid-1990s to approximately 200 at present). Many of these accomplishments were achieved through care provided by Title IV grantees.

    However, more work remains to be done. The remaining perinatal infections in the United States likely represent the most vulnerable HIV-positive pregnant women, and therefore the most difficult to reach. CDC data show that more than 50 percent of babies born with HIV in the United States had mothers who knew their HIV serostatus.19 Thus, identifying HIV-positive pregnant women is clearly not the only barrier to preventing MTCT. Providing HIV-positive women with access to prenatal care that includes intensive case management services designed to support adherence to medical care and treatment is a necessary additional strategy to further reduce incidence of MTCT.

    We propose a $12 million demonstration project in Title IV administered by HRSA to provide grants to institutions to increase the availability of prenatal care for such women, including intensive case management, to help retain them in care and provide the optimal conditions for prevention of MTCT.

    Specific legislative proposal: Section 2671 of the Public Health Service Act (42 U.S.C. 300ff- 33), is amended by adding the following:

    "(1) Demonstration Grants. --

    "(2) In General. -- The Secretary shall award demonstration grants to public and private entities to enable such entities to conduct assessments of the effectiveness of the following strategy in reducing the mother-to-child transmission of HIV:

    "(A) Increasing access to prenatal care for HIV-positive pregnant women and providing intensive case management and support services for HIV-positive pregnant women.

    "(3) Authorization of Appropriations. -- There is authorized to be appropriated to carry out this subsection, $12,000,000 for fiscal year 2006, and such sums as may be necessary for each of fiscal years 2007 through 2010."


    CARE Act Issues

  7. The CARE Act's basic four-title structure should be preserved.

    We support the CARE Act remaining in its basic four-title structure. The existing system of care serves more than half-a-million people annually and has resulted in considerable reductions in both morbidity and mortality.

    The CARE Act's four titles provide a structure that responds to the HIV epidemic across the country but also focuses on areas with the highest needs. Title II serves as a base, ensuring that some CARE Act funds are distributed in every state and territory according to a formula. The rest of the CARE Act responds based on HIV's impact within certain geographic areas and demographic communities. Title I provides added resources for the most highly impacted cities, also through a formula. Title III provides resources for primary medical care for HIV-positive people through a competitive grant process in underserved areas, while Title IV provides care for women, children, youth and families, also through a competitive grant process. While inadequate funding has meant that unmet needs persist, the policy rationale informing the four-title structure is sound.

  8. Prioritization of care services for women, infants, children, and youth in Titles I and II should be maintained.

    As discussed previously, both Titles I and II are required to ensure that a percentage of funds equivalent to the proportion of people within the jurisdiction living with HIV/AIDS who are women, infants, children, and youth be "set aside" for services to reach these groups.

    Early data suggest WICY is having a positive effect, and we support the continuation of this set-aside as a "floor" for funding services to reach these groups. We recommend that the calculation of the WICY set-aside utilize HIV case data as soon as any portion of the CARE Act begins to use HIV data (as opposed to AIDS case data).

    The transition to counting HIV cases is particularly important to women and youth. As the HIV epidemic increasingly affects women and young people, they may be infected more recently than other populations and therefore be less likely to have an AIDS diagnosis. Without AIDS diagnoses, communities with high HIV prevalence could be excluded from WICY counts. Switching to HIV data as soon as possible could correct this imbalance.

    We support adding a reporting requirement to evaluate the ongoing efficacy of this provision.

    Specific legislative proposal:

    (1) Emergency Relief. -- Section 2604(b)(4) of the Public Health Service Act (42 U.S.C. 300ff-14(b)(4)) is amended by adding at the end the following:

    "(C) Data. -- In determining the amount of funds to use for services under subparagraph (A), the chief elected official of the eligible area involved shall use HIV case data (rather than AIDS case data) as soon as the use of such data is adopted for purposes of allocating any other funds authorized under this title."

    (2) General Grants. -- Section 2611(b) of the Public Health Service Act (42 U.S.C. 300ff-21(b)) is amended by adding at the end the following:

    "(3) Data. -- In determining the amount of funds to use for services under paragraph (1), the State involved shall use HIV case data (rather than AIDS case data) as soon as the use of such data is adopted for purposes of allocating any other funding authorized under this title. "(4) Report. -- Not later than October 1, 2007, the Secretary shall submit to the appropriate committees of Congress a report on:
    "(A) the status of HIV case data implementation in relation to the allocation of funds under this subsection and under section 2604(b)(4); and

    "(B) if such data is being used for allocating resources under this title, the impact of the transition from AIDS case data to HIV case data on the resources directed to women, infants, children and youth under this subsection and under section 2604(b)(4)."

  9. Collaboration and communication should be expanded across all titles of the CARE Act and between other federal agencies including HRSA, CDC, SSA, CMS, ACF, SAMHSA, NIH, VA and HUD.

    Providing quality care to people living with HIV/AIDS is an endeavor that crosses jurisdictions of multiple funding streams within the CARE Act and crosses the organizational missions of agencies throughout the federal government. At present, coordination is inadequate.

    For example, recently the CDC's Advancing HIV Prevention (AHP) initiative aimed to identify and enroll thousands of HIV-positive people into care as part of a new focus on prioritizing prevention services for people living with HIV/AIDS. However, no new funds were made available for the expected cost of treating these individuals, estimated by HRSA to be between $4 million and $8 million per year.20 That estimate was predicated on just 3,800 to 7,500 HIV-positive people entering care because of AHP -- if the initiative was more successful, the cost would be significantly higher.

    These problems inhibit effective policy being crafted and implemented on behalf of people living with HIV/AIDS. Congress should respond by creating mechanisms to establish better coordination among federal agencies.

  10. As part of a comprehensive approach to preventing mother-to-child HIV transmission (MTCT), voluntary HIV testing protocols for pregnant women, including during labor, should be promoted, and enhanced surveillance of MTCT should be maintained.

    As discussed previously, the reductions in MTCT in the United States represent one of the best examples of successful HIV prevention. When offered HIV testing, an overwhelming majority of pregnant women will consent.

    The remaining 200 MTCT infections that occur annually in the United States are likely occurring among some of the most vulnerable and disenfranchised women living with HIV. If half these infants had mothers who knew their HIV status, then prenatal HIV testing policy must be designed to reach out not only to the women who do not know their status, but also to those who know or may suspect they are HIV-positive.

    Designing systems of care to identify and reach these women relies upon accessibility, honesty, trust, and credibility with consumers. We believe that more pregnant women accept HIV testing if they are offered information about the importance of HIV testing for their own health and the health of their child. This also must be accompanied by available, accessible care services should the woman test HIV-positive, and these services must be ongoing after the child is born.

    Every HIV infection in an infant should be treated as a sentinel public health event requiring study to determine where the safety net failed. Enhanced HIV surveillance programs in areas with high rates of MTCT should be expanded, and the critical role of rapid testing during labor and delivery must also be emphasized. The prenatal testing policy provisions in Title II must ensure that all pregnant women are offered an HIV test, that they know they are being tested, and that health care providers give pregnant women sufficient information about HIV on which to make a meaningful choice to test. The goals of any prenatal testing policy must be to identify and engage HIV-positive women in care for themselves and their children and reduce mother-to-child transmission of HIV.


Existing Legislation

AIDS Alliance is profoundly grateful for having had the opportunity to work with Senators Dodd (D-Conn.) and Bond (R-Mo.) on the Children and Family HIV/AIDS Research and Care Act of 2004. The Senators and their staff took a deep interest in HIV/AIDS as it affects children and families in the United States, and this legislation (S 2892 -- 108th Congress) resulted from their efforts. Together with the Elizabeth Glaser Pediatric AIDS Foundation and the American Academy of Pediatrics, AIDS Alliance was able to provide input to the Senators about some policy priorities for serving children and families affected by HIV/AIDS.

The five titles of the Children and Family HIV/AIDS Research and Care Act of 2004 reflect many of AIDS Alliance's highest priorities for CARE Act reauthorization:

  • Title I of the bill would reauthorize Title IV of the CARE Act and prioritize family-centered care.

  • Title II would codify into law the work done by the adolescent-focused Title IV grantees.

  • Title III would reauthorize the WICY provisions in Titles I and II of the CARE Act, while requiring data be moved to HIV cases when feasible.

  • Title IV would set up demonstration programs for providing comprehensive care to HIV-positive pregnant women as part of MTCT efforts.

  • Title V would create a research initiative ensuring that any HIV vaccine candidate products would be tested for their safety and efficacy for pediatric use, as well as prioritize research on the long-term effects of anti-AIDS drugs on children, the health needs of perinatally-infected HIV-positive children, the transition to adulthood for HIV-positive children, and safer treatment options for HIV-positive children.

We hope to see this legislation re-introduced in the 109th Congress. Its combination of policy issues recognizes that both care and research are critical to the lives of women, children, youth, and families affected by HIV/AIDS. We strongly support legislative language from this bill being used in reauthorization of the CARE Act.





  
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This article was provided by AIDS Alliance for Children, Youth and Families. It is a part of the publication Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act.
 

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