Continue to support and defend the entitlement status and funding for Medicaid and Medicare, and continue to oppose any efforts to restrict eligibility and services for people living with HIV/AIDS.
Administration's Response
The President has successfully fought to maintain the entitlement status of Medicaid; he has blocked attempts to make drastic cuts in Medicaid spending; he has opposed the block-granting of this program; he has supported a guaranteed package of benefits; and he has opposed attempts to remove the private right of action against inadequate State Medicaid programs.
Assessment of the Response
The continuing evolution of the variety of proposed changes makes our continued vigilance in following this issue essential. The Administration's strong opposition to the proposed changes that have come to date is acknowledged and supported by the Council.
Followup Action Recommended
The Council should continue monitoring changes in Medicaid and Medicare as they are proposed in legislation.
Direct that any waivers granted to States under the Medicaid program ensure access to a comprehensive continuum of care for people living with HIV/AIDS. To implement this policy, the President should direct the HCFA to establish national criteria by which to assess State waiver applications and to ensure that these criteria be consistent with current health care knowledge. These criteria also should be consistent with the provisions of the Americans with Disabilities Act (ADA), and State plans should be reviewed for this purpose by the HHS Office of Civil Rights.
Administration's Response
HCFA is currently reviewing all State Medicaid managed care waiver proposals to ensure continuity of care for Medicaid beneficiaries with HIV/AIDS, including education and outreach efforts during the managed care process, and procedures for disenrollment from HMO programs if continuity and quality cannot be provided through such arrangements. These general criteria have already been applied in several State waiver reviews (e.g., New York, California, and Florida). HCFA is now developing monitoring guidelines to evaluate and promote improvement in Medicaid managed care waiver programs serving people with HIV/AIDS, as well as guidelines for the content and coordination of home care services provided in managed care settings.
During consideration of waiver applications, HCFA has worked closely with relevant community representatives with concerns about a specific State's proposal. In addition, all relevant agencies of HHS—such as the Office for Civil Rights and the Bureau of Primary Health Care at the Health Resources and Services Administration (HRSA)—have an opportunity to review State waiver applications. The HRSA AIDS Program Office will also review waivers with a special focus on HIV/AIDS issues and will, through its HIV/AIDS Managed Care Group, contribute to the development of the national monitoring guidelines being developed by HCFA.
Assessment of the Response
The Council acknowledges HCFA's work in establishing criteria that, while not yet in final form, have been used on a case-by-case basis in reviewing waiver applications.
Followup Action Recommended
We continue to desire that these criteria become "formalized" to ensure they are applied to all future waiver applications and that waivers approved include enforcement procedures to ensure that minimum standards of care are met. The Council will remain engaged in monitoring waivers being sought, with the goal that these waivers fully protect people with HIV/AIDS.
Direct HCFA to ensure that State Medicaid programs cover HIV testing and counseling.
Administration's Response
Medicaid may cover counseling and testing in the context of routine care for Medicaid clients. In addition, HCFA now leads a cross-cutting effort within HHS to provide outreach and information to Medicaid-eligible women regarding the potential benefits of HIV counseling and testing and, if appropriate, AZT treatment for pregnant women. HCFA has also sent policy guidance to State Medicaid directors that promotes full coverage and access for HIV counseling and testing services and AZT treatment pursuant to the results of AIDS Clinical Trials Group 076 protocol.
Assessment of the Response
The Council suggests this recommendation be incorporated into any reviews of standards of care and treatment that are developed over time.
HCFA appears to be using all its available tools under current law to ensure that all Medicaid-eligible persons are offered HIV testing and counseling. The greatest need is to persuade Medicaid providers and physicians to offer testing and counseling as an element of routine preventive medicine.
Followup Action Recommended
The Council requests that HCFA (1) keep the Council regularly informed about the extent to which this goal is being achieved, and (2) propose new measures that would further this goal.
Direct HCFA to report to the Council, at its next meeting, possible strategies to address the need to ensure that all Food and Drug Administration (FDA)-approved drugs are covered under State Medicaid plans, even when prescribed for "off-label" indications. These strategies should address both policies and vigorous enforcement mechanisms.
Administration's Response
The Federal drug rebate law requires States to provide coverage for off-label uses of FDA-approved drugs, including those used in the treatment of HIV/AIDS. A policy guidance similar to that issued regarding AZT for pregnant women is being developed for State Medicaid directors to promote full coverage and access to the newly approved protease inhibitors.
Assessment of the Response
As new therapies become available for HIV, it will be imperative for HCFA to communicate the resulting new standards of care to States, thus ensuring HIV drug reimbursement in participating States.
Followup Action Recommended
The Council will continue to work with the Administration on this issue to ensure that States pay for all approved drugs if they have agreed to drug reimbursement.
The Administration should direct those Federal agencies that either finance or administer health care services (including but not necessarily limited to HCFA, the Department of Veterans' Affairs [VA], the Department of Defense, and the Department of Justice Bureau of Prisons) to develop oversight guidelines for HIV managed care programs. This will also require effective regulatory enforcement mechanisms.
Administration's Response
See response to Recommendation II.B.2. regarding HCFA's policies. While the VA provides guidance to its clinicians regarding standards of care for people with HIV, it does not restrict the discretion of the practicing physician to determine a treatment protocol for an individual patient. Most HIV-related care in the VA system is delivered by infectious disease specialists who serve as the primary care providers for people with HIV.
The Office of National AIDS Policy has convened a working group of Federal agencies with programs affecting the incarcerated, including the Bureau of Prisons, with the express purpose of developing a standard of care for prisoners with HIV disease.
Assessment of the Response
This recommendation requires development of policies, procedures, and support to be used by community organizations, as managed care develops over time. Thus, the vast array of actions required to fully implement this recommendation is a work in process. This is very important to ensure that treatment, over time, is accessible, effective, complete, and timely. The Indian Health Service should be included as one of the agencies covered under this recommendation.
Followup Action Recommended
The Council must ensure that ongoing progress continues and that community organizations, which have been central in providing health care for persons with HIV/AIDS, remain an integral part of any managed care system and continue to receive appropriate support as the managed care environment develops.
The Administration should direct HRSA to develop a coordinated agency-wide approach that provides effective education, training, and technical assistance to HIV/AIDS providers and AIDS service organizations on health care management issues. Such an approach should include active participation by the private sector.
Administration's Response
HRSA has instituted several activities in response to the managed care movement. These include:
• Establishment of the HRSA Managed Care Priority Group, which formed a partnership with American Association of Health Plans, formerly, Group Health Association of America, and jointly planned a national conference, April 1-2, 1996, to address managed care issues that relate to HRSA's mission and programs.
• Formation of a subgroup of the HRSA AIDS Priority Committee/HRSA AIDS Coordinators to develop a strategy to address the issues of managed care and HIV/AIDS.
• Implementation activities by the Bureau of Primary Health Care that have resulted in the development of a comprehensive managed care program that gives training, technical assistance, supplementary grant support, and access to senior executives in the managed care industry. The program includes training in managed care operations and procedures to health center staff, on-site technical assistance, network development, self-assessment tools, and collaborative initiatives with other Federal agencies, State and local governments, national organizations, private sector providers, and others involved in serving underserved populations. The Title III(b) programs (early intervention services for HIV/AIDS) are included in these activities. Recently, the Bureau of Primary Health Care has developed an agreement to train State health officials involved in the administration of CDC grants on managed care issues and has also initiated bureau-wide staff training in managed care.
• Active involvement of the AIDS Education and Training Centers (AETC) program in providing HIV training to providers working in managed care settings.
• Rapid dissemination of findings from five Special Projects of National Significance (SPNS) grants. These are grants to design and evaluate HIV capitated care approaches. Findings from these grants will be disseminated to HRSA grantees and other HIV providers through presentations, training, fax-out bulletins, and technical assistance to individual grantees. The SPNS grantees have participated in Titles I, II, and III(b) training sessions or meetings during the past 12 months.
Assessment of the Response
HRSA has been responsive in developing programs and plans for working with its grantees to understand the changing world of managed care and how they can continue to be essential care providers. Nevertheless, the vast array of actions necessary to fully implement this recommendation is a work in process. This is very important to ensure that treatment, over time, is accessible, effective, complete, and timely.
Followup Action Recommended
The Council must ensure that ongoing progress continues and that community organizations, which have been central to providing health care for persons with HIV/AIDS, remain an integral part of any managed care system. The Secretary of HHS needs to ensure that education, training, and technical assistance on managed care be made available to all grantees of the Ryan White CARE Act.
It will also be important to ensure, over time, that adequate monitoring and reporting systems are developed to enable the Secretary to assess whether and to what extent all managed care systems, including comprehensive health centers, provide the full range of high-quality care and services needed by clients with HIV/AIDS.
Because complementary therapies are widely used, the President should direct all appropriate agencies to support investigation of the efficacy of complementary therapies and provide increased financial support for this effort. Therapies shown to have benefit should be reimbursed under Medicaid.
Administration's Response
The NIH Office of Alternative Medicine (OAM) has awarded a number of grants in the area of alternative therapies for AIDS. In addition, the recent report of the NIH AIDS Research Program Evaluation Working Group contains a specific recommendation that NIH should "strengthen the scientific base for the assessment of complementary and alternative therapies for HIV disease." Under the law, Medicaid can cover only FDA-approved treatments. There is a pending policy statement for Ryan White CARE Act Titles I and II that would permit CARE Act funds to be used for complementary therapies.
Assessment of the Response
Both the Council and the report of the NIH AIDS Research Program Evaluation Working Group confirm the importance of complementary therapies in the management of HIV disease. This area of research is only now beginning to receive the attention it deserves.
Followup Action Recommended
We expect HRSA to implement its proposal to allow alternative and complementary therapies to be reimbursed under the Ryan White CARE Act. HHS should convene a working group to assess mechanisms to obtain third-party coverage, including Medicare or Medicaid, for complementary therapies. This evolving area will require continued monitoring by the Council.
The President should continue to support full funding to a national network of AETCs, and direct HRSA to ensure that the work of the AETCs is coordinated with community providers and planning groups.
Administration's Response
The President supported $16.3 million for the national AETC program in FY 1996. The final appropriation for the AETCs was only at $12 million. The President has requested $16.3 million for the AETCs in his FY 1997 budget.
It is a priority of the AETC program to establish close working relationships with community providers and planning groups and to include community input in development of training activities and information dissemination plans. This has been accomplished more successfully in the epicenters, where the 15 main grantees are located, than in less affected areas. The proposed inclusion of the AETC program in the reauthorized Ryan White CARE Act will help to strengthen the relationship with these community providers.
Assessment of the Response
The Council commends the President's leadership in restoring funding for AETCs even though Congress reduced the final allocation from $16.3 million to $12 million in FY 1996.
While we agree that a closer working relationship has been developed by many AETC sites with local community providers and planning groups, other sites have been less successful.
We recognize the important function the AETC program plays in training health care providers in delivering quality, state-of-the-art care.
Followup Action Recommended
We support the President's request in his FY 1997 budget to restore funding for AETCs to $16.3 million. The director of the AETC program should monitor the working relationship of each AETC with its associated planning councils, consortiums and other HIV coalitions in order to ensure more definitive and appropriate training efforts in all the regions.
The Administration should direct HRSA to review and report to the Council at its next meeting the effectiveness of the Bureau of Health Professions' education activities specific to HIV/AIDS.
Administration's Response
A written progress report on this recommendation will be provided prior to the September meeting of the Council.
Assessment of the Response
The continuing inability of many health care providers to recognize and diagnose HIV infection, particularly in women, and provide state-of-the-art therapeutics is directly related to the need for ongoing education on HIV infection. In light of the funding decreases to both the AETC program and to overall health professions education, the Council is concerned about the impact on the diagnosis and care of HIV-infected persons.
Followup Action Recommended
The Council requests that the AIDS Program Office and HRSA's Bureau of Health Professions work together to respond to these concerns. A substantive written response, with recommendations for action, should be made available to the Services Subcommittee 30 days prior to the next Council meeting.