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STATEMENTS ON INTRODUCED BILLS AND JOINT RESOLUTIONS -- (Senate - March 29, 2000)

Section 2655 (42 U.S.C. 300ff-55) is amended by striking ``1996'' and all that follows

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through ``2000'' and inserting ``2001 through 2005''.

   SEC. 144. ADMINISTRATIVE EXPENSES CEILING; QUALITY MANAGEMENT PROGRAM.

    Section 2664(g) (42 U.S.C. 300ff-64(g)) is amended--

    (1) in paragraph (3), to read as follows:

    ``(3) the applicant will not expend more than 10 percent of the grant for costs of administrative activities with respect to the grant;'';

    (2) in paragraph (4), by striking the period and inserting ``; and''; and

    (3) by adding at the end the following:

    ``(5) the applicant will provide for the establishment of a quality management program to assess the extent to which medical services funded under this title that are provided to patients are consistent with the most recent Public Health Service guidelines for the treatment of HIV disease and related opportunistic infections and that improvements in the access to and quality of medical services are addressed.''.

   SEC. 145. PREFERENCE FOR CERTAIN AREAS.

    Section 2651 (42 U.S.C. 300ff-51) is amended by adding at the end the following:

    ``(d) PREFERENCE IN AWARDING GRANTS.--Beginning in fiscal year 2001, in awarding new grants under this section, the Secretary shall give preference to applicants that will use amounts received under the grant to serve areas that are otherwise not eligible to receive assistance under part A.''.

   

Subtitle D--Amendments to Part D (General Provisions)

   SEC. 151. RESEARCH INVOLVING WOMEN, INFANTS, CHILDREN, AND YOUTH.

    (a) ELIMINATION OF REQUIREMENT TO ENROLL SIGNIFICANT NUMBERS OF WOMEN AND CHILDREN.--Section 2671(b) (42 U.S.C. 300ff-71(b)) is amended--

    (1) in paragraph (1), by striking subparagraphs (C) and (D); and

    (2) by striking paragraphs (3) and (4).

    (b) INFORMATION AND EDUCATION.--Section 2671(d) (42 U.S.C. 300ff-71(d)) is amended by adding at the end the following:

    ``(4) The applicant will provide individuals with information and education on opportunities to participate in HIV/AIDS-related clinical research.''.

    (c) QUALITY MANAGEMENT; ADMINISTRATIVE EXPENSES CEILING.--Section 2671(f) (42 U.S.C. 300ff-71(f)) is amended--

    (1) by striking the subsection heading and designation and inserting the following:

    ``(f) ADMINISTRATION.--

    ``(1) APPLICATION.--''; and

    (2) by adding at the end the following:

    ``(2) QUALITY MANAGEMENT PROGRAM.--A grantee under this section shall implement a quality management program.''.

    (d) COORDINATION.--Section 2671(g) (42 U.S.C. 300ff-71(g)) is amended by adding at the end the following: ``The Secretary acting through the Director of NIH, shall examine the distribution and availability of ongoing and appropriate HIV/AIDS-related research projects to existing sites under this section for purposes of enhancing and expanding voluntary access to HIV-related research, especially within communities that are not reasonably served by such projects.''.

    (e) AUTHORIZATION OF APPROPRIATIONS.--Section 2671(j) (42 U.S.C. 300ff-71(j)) is amended by striking ``fiscal years 1996 through 2000'' and inserting ``fiscal years 2001 through 2005''.

   SEC. 152. LIMITATION ON ADMINISTRATIVE EXPENSES.

    Section 2671 (42 U.S.C. 300ff-71) is amended--

    (1) by redesignating subsections (i) and (j), as subsections (j) and (k), respectively; and

    (2) by inserting after subsection (h), the following:

    ``(i) LIMITATION ON ADMINISTRATIVE EXPENSES.--

    ``(1) DETERMINATION BY SECRETARY.--Not later than 12 months after the date of enactment of the Ryan White Care Act Amendments of 2000, the Secretary, in consultation with grantees under this part, shall conduct a review of the administrative, program support, and direct service-related activities that are carried out under this part to ensure that eligible individuals have access to quality, HIV-related health and support services and research opportunities under this part, and to support the provision of such services.

    ``(2) REQUIREMENTS.--

    ``(A) IN GENERAL.--Not later than 180 days after the expiration of the 12-month period referred to in paragraph (1) the Secretary, in consultation with grantees under this part, shall determine the relationship between the costs of the activities referred to in paragraph (1) and the access of eligible individuals to the services and research opportunities described in such paragraph.

    ``(B) LIMITATION.--After a final determination under subparagraph (A), the Secretary may not make a grant under this part unless the grantee complies with such requirements as may be included in such determination.''.

   SEC. 153. EVALUATIONS AND REPORTS.

    Section 2674(c) (42 U.S.C. 399ff-74(c)) is amended by striking ``1991 through 1995'' and inserting ``2001 through 2005''.

   SEC. 154. AUTHORIZATION OF APPROPRIATIONS FOR GRANTS UNDER PARTS A AND B.

    Section 2677 (42 U.S.C. 300ff-77) is amended to read as follows:

   ``SEC. 2677. AUTHORIZATION OF APPROPRIATIONS.

    ``There are authorized to be appropriated--

    ``(1) such sums as may be necessary to carry out part A for each of the fiscal years 2001 through 2005; and

    ``(2) such sums as may be necessary to carry out part B for each of the fiscal years 2001 through 2005.''.

   

Subtitle E--Amendments to Part F (Demonstration and Training)

   SEC. 161. AUTHORIZATION OF APPROPRIATIONS.

    (a) SCHOOLS; CENTERS.--Section 2692(c)(1) (42 U.S.C. 300ff-111(c)(1)) is amended by striking ``fiscal years 1996 through 2000'' and inserting ``fiscal years 2001 through 2005''.

    (b) DENTAL SCHOOLS.--Section 2692(c)(2) (42 U.S.C. 300ff-111(c)(2)) is amended by striking ``fiscal years 1996 through 2000'' and inserting ``fiscal years 2001 through 2005''.

   

TITLE II--MISCELLANEOUS PROVISIONS

   SEC. 201. INSTITUTE OF MEDICINE STUDY.

    (a) IN GENERAL.--Not later than 120 days after the date of enactment of this Act, the Secretary of Health and Human Services shall enter into a contract with the Institute of Medicine for the conduct of a study concerning the appropriate 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 with HIV disease.

    (b) REQUIREMENTS.--

    (1) COMPLETION.--The study under subsection (a) shall be completed not later than 21 months after the date on which the contract referred to in such subsection is entered into.

    (2) ISSUES TO BE CONSIDERED.--The study conducted under subsection (a) shall consider--

    (A) the availability and utility of health outcomes measures and data for HIV primary care and support services and the extent to which those measures and data could be used to measure the quality of such funded services;

    (B) the effectiveness and efficiency of service delivery (including the quality of services, health outcomes, and resource use) within the context of a changing health care and therapeutic environment as well as the changing epidemiology of the epidemic;

    (C) existing and needed epidemiological data and other analytic tools for resource planning and allocation decisions, specifically for estimating severity of need of a community and the relationship to the allocations process; and

    (D) other factors determined to be relevant to assessing an individual's or community's ability to gain and sustain access to quality HIV services.

    (c) REPORT.--Not later than 90 days after the date on which the study is completed under subsection (a), the Secretary of Health and Human Services shall prepare and submit to the appropriate committees of Congress a report describing the manner in which the conclusions and recommendations of the Institute of Medicine can be addressed and implemented.

   Mr. KENNEDY. Mr. President, it is a privilege to join Senators JEFFORDS, FRIST, DODD, HATCH, BINGAMAN, and WELLSTONE in introducing the Ryan White CARE Reauthorization Act. I commend Senator JEFFORDS for his leadership and commitment in making this legislation a top priority of the Health, Education, Labor, and Pensions Committee for enactment this year. I commend Senator FRIST for his medical knowledge and expertise in drafting this legislation. Senator DODD has been strongly committed to this issue for many years and I am pleased that he continues his commitment this year. Senator HATCH joined me more than a decade ago when we first introduced this legislation, and he has remained committed and involved ever since, and I commend his leadership. Senators BINGAMAN and WELLSTONE are members of our Senate Committee, and they have shown a great deal of interest in making sure that these resources reach rural Americans and other emerging populations.

   Over the past twenty years, the nation has made extraordinary progress in responding to the AIDS epidemic. Medical advances, new and effective treatments, and the development of an HIV care infrastructure in every state have dramatically improved the access to care for individuals and families with HIV who would otherwise not be able to afford such care. By providing life-sustaining health and related support services, we have reduced the spread of AIDS.

   The CARE Act has contributed to the significant drop in new AIDS cases. AIDS-related deaths have decreased significantly, dropping 42% from 1996 to 1997, and 20% from 1997 to 1998. Persons with HIV/AIDS are living longer and healthier lives because of the CARE Act.

   Perinatal HIV transmission from mother to child has been reduced by 75% from 1992 to 1997. We are closing the gap in health care disparities in vulnerable populations such as communities of color, women, and persons with HIV who are uninsured and underinsured.

   Medications have made a difference too. Highly active anti-retroviral

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therapies have given a second lease on life to many Americans with HIV/AIDS. An estimated 80% of persons in treatment have used one or more of these new and effective drugs.

   HIV health care and supportive services have also made a difference. An estimated 600,000 persons have received HIV services through the Ryan White CARE Act, including primary care, substance abuse treatment, dental care, hospice care, and other specialized HIV health care services, and the availability of these services has enabled them to lead productive lives.

   In Massachusetts, for example, we have seen an overall 77% decline in AIDS and HIV-related deaths since 1995. At the same time, however, like many other states, we are concerned about the changing HIV/AIDS trends and profiles. AIDS and HIV cases increased in women by 11% from 1997 to 1998, and 55% of persons living with AIDS in the state are persons of color.

   Clearly, we have had significant successes in fighting AIDS. We have come a long way from the days when ideology dictated care for people with AIDS and not sound public health policy. Fortunately, with the leadership of Senator HATCH and Senator JEFFORDS and our bipartisan coalition, we were able to enact the Ryan White CARE Act in memory of Ryan White. He was a young man with hemophilia who contracted AIDS through blood transfusions, and touched the world's heart through his valiant efforts to speak out against the ignorance and discrimination faced by many persons living with AIDS. His mother, Jeanne White carried on her son's message after Ryan's death in 1990. She was instrumental in the passage of the Care Act in 1990 and then again in 1996 and now in 2000.

   The enactment of the Ryan White CARE Act in 1900 provided an emergency response to the devastating effects of HIV on individuals, families, communities, and state and local governments. The CARE Act signaled a comprehensive approach by targeting funds to respond to the specific needs of communities. Title I targets the hardest hit metropolitan areas in the country. Local planning and priority setting requirements under Title I assure that each of the Eligible Metropolitan Areas respond to the local HIV/AIDS demographics.

   Title II of the Act funds emergency relief to the states. It helps them to develop an HIV care infrastructure and provide effective and life-sustaining HIV/AIDS drug therapies through the AIDS Drug Assistance Program to over 61,000 persons each month.

   Title III funds community health centers and other primary health care providers that serve communities with a significant and disproportionate need for HIV care. Many of these community health centers are located in the hardest hit areas, serving low income communities.

   Finally, Title IV of the CARE Act is designed to meet the specific needs of women, children and families.

   While the CARE Act has benefited large numbers of Americans in need, a number of critical areas remain where improvements are essential if we are to meet the growing needs in our communities. We know that of the estimated 750,000 persons living with HIV/AIDS in the United States, over 215,000 know their HIV status, yet are not in care. New health care access points are needed to bring these persons into care. At the same time, the CARE Act programs currently serving an estimated 600,000 persons annually are challenged more than ever in meeting the growing need and demand for services. The Centers for Disease Control and Prevention estimates that the need will continue to grow since we have an estimated 40,000 new cases of HIV/AIDS annually in the United States.

   Also, not everyone is benefiting from the advances in the development of new and effective drug treatments. The skyrocketing costs of expensive AIDS drugs, estimated at $15,000

   annually per person, has led 26% of the CARE Act's AIDS Drug Assistance Programs to cap enrollment, establish waiting lists, or limit eligibility. Guaranteeing that effective drug treatments are available and affordable to all persons with HIV/AIDS has always been a priority for the CARE Act. Reducing barriers to access in communities of color and other vulnerable populations is a priority for this reauthorization.

   We are fortunate in Massachusetts to have a state budget that has also been able to provide funding for primary care, prevention, and outreach efforts, but no state by itself can provide the significant financial resources to help persons living with HIV to obtain needed medical and support access.

   We still find serious disparities in access to HIV health care in communities of color, women, the uninsured and underinsured. The demographics of the epidemic have been steadily changing. The majority of new AIDS cases reported are among racial and ethnic minority populations and groups that traditionally have faced heavy barriers in obtaining adequate health care services. While African Americans make up 12% of the general population, they account for 45% of new AIDS cases. 80% of new AIDS cases are occurring in women of color. As many as half of all new infections are occurring in people under the age of 25, and one quarter of all new infections are occurring in persons under the age of 22. The CARE Act must be able to adjust to meet these changing trends in the HIV/AIDS epidemic. Geographic shifts in the epidemic as well as the availability of new sources of financing for HIV/AIDS care must be taken into account to assure equity in how the federal government and states respond to the epidemic.

   The CARE Act must continue to provide resources to help local communities to plan and to set priorities for CARE dollars. We must develop better ways to measure the severity of need and the health disparities, and assure that these improvements are taken into account in HIV planning, in establishing priorities, and in allocating funds.

   This bill addresses these new challenges in ensuring access to HIV drug treatments for all, reducing health disparities in vulnerable communities, and improving the distribution and quality of services under the CARE Act. Proposed changes will ensure greater access to care in low income, historically underserved urban and rural communities, by increasing targeted funding to areas where the HIV care infrastructure may not exist. This bill also focuses on quality and accountability of HIV service delivery by requiring effective quality management activities that ensure their consistency with Public Health Service guidelines, and by making changes to ensure that CARE Act dollars are used for their intended purposes.

   These improvements are intended to close the gap in health care disparities and improve inequities in services and funding among states. They will build capacity in underserved rural and urban areas, and focus state and local program priorities on underserved populations and persons not in care. They will develop new points of entry relationships to improve coordination of care. They will increase early access to care, in order to begin HIV treatment earlier and improve the quality of care that patients receive.

   We know that the CARE Act has made a difference not only in the lives of persons with HIV/AIDS, but also in the lives of countless loved ones who have seen despair turned to hope through support of CARE Act services. The story of Lory in Massachusetts is a compelling example of young woman living with HIV, unable to work full-time, and unable to afford anti-retroviral medications without Ryan White CARE Act assistance. The support she has received from the caring staff at Fenway Clinic in Boston is impressive. As Lory told us at our committee hearing on March 2nd on the reauthorization of the Act ``It is not an exaggeration when I tell you that without Fenway I would be dead. They have saved my life.''

   I'm sure that Lory's eloquent testimony is true of countless others across the country who are living with this tragic disease. The Ryan White CARE Act has made an enormous difference in their lives. I look forward to early action by Congress on this important legislation, so that we can continue to help as many people as possible.

   Mr. FRIST. Mr. President, the Centers for Disease Control and Prevention estimate that between 650,000 and 900,000 Americans are currently living with human immunodeficiency virus (HIV), of whom 280,000 have acquired immune deficiency syndrome (AIDS). As of June 1999, there were 8,814 people in my home state of Tennessee living with HIV/AIDS. As a physician, I have seen first hand the deadly impact of

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this disease on patients, and have also seen first hand what can happen if the prevalence of AIDS goes unchecked. On February 24, 2000, as chairman of the Foreign Relations Subcommittee on Africa, I held a hearing on the AIDS crisis in Africa. In Africa, this disease has reached truly pandemic proportions, causing cultural and economic devastation. Every day, there are 16,000 new infections globally, despite the great strides we have made in the treatment and prevention of this condition.


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