GOP Congress Moves Ahead on Ryan White Care Act
Work Begins on Federal AIDS Program Reauthorization
(WASHINGTON, DC) – The Republican-controlled House and Senate have both begun work on reauthorizing the Ryan White CARE Act, the federal mechanism of support for local and state care and treatments programs for people with HIV/AIDS. The bill, first sponsored by Senator Orrin Hatch (R-UT) and passed in 1990, was reauthorized in the 104th Congress in 1996, and is up again for reauthorization this year, led by Senator Jim Jeffords (R-VT), chairman of the Senate Committee on Health, Education, Labor and Pensions; and Congressman Tom Coburn (R-OK), vice-chairman of the House Commerce Subcommittee on Health and the Environment.
Over the course of its majority in Congress, the GOP leadership has pushed through funding increases far above President Clinton's budget requests each successive year since 1995. The 1996 reauthorization responded to the changing face of the HIV/AIDS epidemic, ensuring greater equity in funding for rural areas and non-urban states. In House and Senate proposals, released in recent days, Congress plans to move more decisively in shaping the Ryan White CARE Act to address the most pressing needs of people with HIV/AIDS over the next five years – putting priority in saving and extending lives over preserving outdated and inefficient bureaucracies.
Since 1995, Log Cabin Republicans has been a critical player in federal AIDS care policy. From the 1996 reauthorization of the Ryan White CARE Act, to delivering Congressional testimony on annual Ryan White appropriations, to being a leading voice in the HIV/AIDS community in favor of FDA Reforms and in staunch opposition to price controls, Log Cabin Republicans has a strong record of success year after year.
In particular, we have advocated prioritizing care, especially in the AIDS Drug Assistance Program, over bureaucracy in the federal AIDS strategy. As the Ryan White CARE Act is now set for reauthorization again, with special emphasis on wider and fairer ADAP funding, including an increase in the base grant levels; building a greater domestic AIDS treatment infrastructure with upgraded Section F support for AIDS Education Training Centers (AETCs) personnel for greater use of effective treatments and better compliance with treatment regimens; greater ADAP and other treatment enrollment of women, people of color and rural patients currently at risk; and the application of normal federal sunshine standards in the granting of Ryan White CARE Act funding.
Log Cabin Republicans is working with the Republican leadership in the House and Senate on the new legislation in order to address what we see as the most pressing priorities for the federal AIDS strategy in the next five years.
For more information – Log Cabin Republicans Congressional Correspondence
Senate Bill Review – Ryan White CARE Act Amendments of 2000 [In response to mark-up proposal of Senator Jim Jeffords (R-VT), Chairman, Senate Committee on Health, Education, Labor and Pensions.
March 30, 2000
The Honorable James Jeffords
Chairman, Committee on Health, Education, Labor and Pensions
United States Senate
Dear Mr. Chairman:
I am writing to thank you for consulting with us on the Ryan White CARE Act Amendments of 2000. All of us who care about HIV/AIDS policy owe a debt of gratitude to you for your consistent leadership on this important issue, and we are confident that the reauthorization of the Ryan White CARE Act will be a productive process with you at the helm of the Committee.
We have reviewed the legislative summary and draft language, and wanted to give you our views. As you know, we have long advocated in the appropriations process that the federal AIDS strategy must prioritize saving and extending the lives of people with HIV/AIDS. Congress had been very responsive in this regard, and has increased funding for Ryan White by hundreds of millions of dollars above President Clinton's annual budget requests since 1996. These increases by Congress have had special emphasis on funding for AIDS drug assistance, which has helped to dramatically cut the AIDS death rate nationwide. As we begin the reauthorization process, we want to emphasize again that this prioritization strategy has clearly worked – and it should become institutionalized in the Act itself.
Most notably, we're pleased to see the inclusion of the new supplemental ADAP grants, something we have long advocated. This begins to address the inequities between urban areas and rural states in funding for access to life-saving treatments and medical care.
We also applaud the Title I amendment which requires support service to be health care related. It is vital to make sure that funding across the Titles reflect the priorities of the HIV/AIDS epidemic of today, and don't maintain inefficient bureaucracies that are peripheral to health care.
These changes are good beginnings, but there are additional measures we believe should be added to the Act that are not currently in the draft:
It is crucial to upgrade the Part F AIDS Education and Training Centers (AETC's) to address the increasing need for clinical personnel training in underserved areas of the country. This is a vital care-related service that strategically goes hand-in-hand with ADAP funding as the means to saving and extending lives of people with HIV, especially in underserved areas where there are thousands of clinical patients (many of whom are women and people of color) who are still only on AZT or another monotherapy regimen and AETC support is not available in the area. The lives of those patients are clearly at risk, and they are likely to become seriously ill and more seriously dependent on costlier entitlement support without basic clinical care and access to the full range of AIDS treatments. Upgrading AETC funding can help address this problem at the start.
We share the concerns of advocates who see that a continued system of counting patients through the weighted AIDS multi-year formula rather than through incidence of living HIV-positive patients, will make the Ryan White CARE Act progressively less responsive to the epidemic as it is now. The Senate draft phases in a requirement by FY 2003 in Title II for people with HIV who are not currently in care, but we urge the further consideration, along with HIV/AIDS community advocates, of a way to ensure that the counting issue is more comprehensively addressed. This would require additional consensus on the method of tracking HIV-positive individuals, but we hope this is still achievable among community advocates, since the problems resulting from not reaching consensus will be serious for current and future HIV patients.
As we mentioned in regard to AETC's, women and people of color have been increasingly underserved since the Amendments of 1996, and the Senate draft does address this problem in many ways, such as in the set-aside amendments for women and children in Titles I and II. However, the funding inequities based on geography have also impacted people of color who make up substantial HIV populations in some rural states. The Title II supplemental grants will help address this, but we look forward to exploring additional ways with the Committee and community advocates to address this problem, which shouldn't be allowed to worsen over the next five years.
Finally, we believe it is overdue to include basic federal sunshine standards in the Ryan White CARE Act for grant recipients, especially in light of the recent GAO report on this subject. We hope this will be in the final version of the Act.
We want to again applaud you for your leadership on this issue, and by starting the process with some good additions. We recognize this will be a continuing process, and look forward to working with you and the Committee in the months to come. Our goal, like yours, is to complete work on the Amendments Act expeditiously and with widest consensus, while we continue to articulate our views of the best AIDS policy going forward.
Thank you for your consideration.
Director of Public Affairs
House Bill Review – Ryan White CARE Act Amendments of 2000 [In response to mark-up proposal of Congressman Tom Coburn (R-OK), Vice-Chairman, House Commerce Subcommittee on Health and the Environment.
April 4, 2000
The Honorable Tom Coburn, M.D.
U.S. House of Representatives
Dear Dr. Coburn:
We wanted to thank you for consulting with us on the Ryan White CARE Act Amendments of 2000, which as you know has been a long-standing legislative priority for our organization. We appreciate the strong working relationship we have developed with you and your staff on this issue over the past five years, and look forward to working closely with you and the Republican leadership in the House on this important reauthorization effort.
After reviewing the main points of the proposed House legislation, it is clear that we share a strong commitment to ensuring that the Ryan White CARE Act is responsive to the HIV/AIDS epidemic of today, and remains so for the next five years. Log Cabin Republicans has been a leading advocate of prioritizing saving and extending the lives of people with HIV/AIDS over maintaining outdated and inefficient bureaucracies that don't reflect the urgent health care needs of today's epidemic. The House proposal reflects this throughout, and we applaud this development.
There are several key elements to the House proposal that we strongly support, and I wanted to review them for you:
INCREASED PRIORITY FOR LIFE-SAVING TREATMENTS
Log Cabin Republicans has called for the Ryan White CARE Act of the next five years to be more aggressive in its focus on access to life-saving treatments and the delivery of essential treatment-related support services such as drug regimen compliance education. The House proposal requires that Title I and Title II funding must directly facilitate the delivery of health care benefits, which we support.
We have strongly advocated the creation of an emergency supplemental fund for the AIDS Drug Assistance Program (ADAP) in Title II, which would prioritize ADAP shortfalls in states which do not receive Title I funding. The House proposal includes this provision, with requirements for matching state funding. We look forward to working with you and Republican governors around the country to ensure this crucial provision is in the final legislation.
We have also called for increasing the base funding for ADAP, as the 1996 reauthorization occurred before the new generation of HIV/AIDS treatments took hold and their effectiveness could be widely measured. The House proposal includes this provision, which we strongly support.
We also strongly support renewing the option for states to use ADAP funding to purchase private insurance for eligible patients that would cover their HIV/AIDS treatments, or to subsidize ongoing premiums for comprehensive primary medical care for eligible patients. We need to continue allowing this kind of flexibility for states.
The House proposal also directs the Institute of Medicine to conduct a detailed study on the real benefits and costs to expanding Medicaid to cover HIV treatments in addition to AIDS treatment. Vice President Al Gore backed away from this idea after promising to enact it in a political speech in 1997, and the cost-assessments which reportedly caused him to quietly drop the proposal have never been made public. We strongly support this provision, and look forward to analyzing the results.
UPGRADING AETC's – A NEW AND RESPONSIVE HIV/AIDS CARE INFRASTRUCTURE
The House proposal requires that a specific portion of Part F funding for AIDS Education and Treatment Centers (AETC's) be set aside to train providers in gynecological care for HIV-positive women and women-focused care protocols, including prenatal care for women with HIV. These are positive steps forward for upgrading AETC's, and we support them.
Log Cabin Republicans believes however that this is the one area where the House proposal does not go far enough. It is crucial to upgrade AETC's to address the increasing need for clinical personnel training in underserved areas of the country. This is a vital care-related service that strategically goes hand-in-hand with ADAP funding as the means to saving and extending lives of people with HIV, especially in underserved areas where there are thousands of clinical patients (many of whom are women and people of color) who are still only on AZT or another monotherapy regimen and AETC support is not available in the area. The lives of those patients are clearly at risk, and they are likely to become seriously ill and more seriously dependent on costlier entitlement support without basic clinical care and access to the full range of AIDS treatments. Upgrading AETC funding can help address this problem at the start, and we urge the House to address this.
The House proposal directs HHS to research and develop informational data systems which disseminate treatment guidelines and protocols to health care providers relating to the care of individuals with HIV/AIDS, including a national toll-free number for care providers to discuss the latest treatment options. This will also help close the many gaps across the country in provider education, and we support its inclusion.
STRENGTHENING TITLE I FOR THE NEXT FIVE YEARS
As you know, many local AIDS activists around the country have been calling for greater accountability in Title I funding, and greater efficiency in Title I services. We believe that building reasonable accountability measures will not only prevent fraud and abuse, which has been uncovered in recent years, but will strengthen Title I and make the EMA Planning Councils more vital and effective in their crucial mission.
We support the application of basic federal sunshine standards to all funding recipients of the Ryan White CARE Act. The House proposal would apply sunshine laws to Title I Planning Councils, and the use of random sampling audits over time to study and monitor the use of funds, which we support. We also support the provisions to ensure that one-third of each planning council must consist of HIV/AIDS care consumers with no financial relationship to any non-governmental grantee or subgrantee receiving funding, and that a majority of each planning council must not include a salaried employee, board member, or consultant for an organization receiving CARE Act funds, not including individual consumers. These provisions will not only help prevent conflicts of interest, but will ensure greater community involvement by consumers of Title I care services.
The House proposal also directs HRSA to work with Title I and II funding recipients to streamline the application process, and orders a new and simpler application by FY 2003. There is also a requirement for HRSA to consult funding recipients on the value of instituting consistent federal grant periods for both Titles to facilitate closer coordination of programs and transitioning to a biannual application process for federal grants management. These provisions are a welcome move toward greater efficiency and should further strengthen Title I Planning Councils and their funding recipients by cutting red tape.
Another provision directs HHS, with input from states and cities, to develop a plan for increased care coordination between Medicaid, S-CHIP, Title I, Title II and other relevant programs. The greatest beneficiary of this provision will be patients who depend on Ryan White support,
Thank you for your consideration.
Director of Public Affairs