Senate Floor Speeches Introducing the Ryan White CARE Reauthorization Act, March 29, 2000

Senator Kennedy | Senator Dodd | Senator Wellstone

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 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.

Senator James Jeffords (R-VT):

Mr. President, it gives me great pleasure to join my colleagues today in introducing the Ryan White Comprehensive AIDS Resources and Emergency Act Amendments of 2000; a measure that will reauthorize a national program of providing primary health care services for people living with HIV and AIDS. I especially want to commend Senators Hatch and Kennedy for the leadership they have provided since the inauguration of the legislation establishing the Ryan White programs over a decade ago. I also want to commend Senator Frist whose medical expertise played a critical role in key provisions of the bill and continues to be an invaluable resource to our efforts on the range of health issues that come before the Senate. Finally, I want to acknowledge Senator Enzi's recognition of the growing burden that AIDS and HIV is having on rural communities throughout the country and the need to address those gaps in services.

Since its inception in 1990, the Ryan White program has enjoyed broad bipartisan support. When I looked back to the last time the Ryan White CARE Act was reauthorized in 1996, I was heartened to see that the measure had garnered a vote of 97 to 3 on its final passage. I urge my colleagues to examine this bill we are introducing today and to join me in working toward its passage.

With this reauthorization, we mark the ten years through which the Ryan White CARE Act has provided needed health care and support services to HIV positive people around the country. Titles I and II have provided much needed relief to cities and states hardest hit by this disease, while Titles III and IV have had a direct role in providing healthcare services to underserved communities. Ryan White program dollars provide the foundation of care so necessary in fighting this epidemic.

Fortunately, we have experienced significant success over the last decade, and especially over the last five years. The General Accounting Office recently released a report that found that CARE Act funds are reaching the infected groups that have generally been found to be underserved, including the poor, the uninsured, women, and ethnic minorities. In fact, these groups form a majority of CARE Act clients and are being served by the CARE Act in higher proportions than their representation in the AIDS population. The GAO also found that CARE Act funds support a wide array of primary care and support services, including the provision of powerful therapeutic regimens for people with HIV/AIDS that have dramatically reduced AIDS diagnoses and deaths.

Mr. President, there have also been successes in the reduction of HIV/AIDS among women, infants and children. During the last reauthorization, Congressman Coburn and our colleague, Senator Frist, focused our attention on the needs of women living with HIV/AIDS and the problems associated with perinatal transmission of HIV. Since then, the CARE Act has helped to dramatically reduce mother-to-child transmission through more effective outreach, counseling, and voluntary

testing of mothers at risk for HIV infection. Between 1993 and 1998, perinatal-acquired AIDS cases declined 74% in the U.S. In this bill, I have continued to support efforts to reach women in need of care for their HIV disease and have included provisions to ensure that women, infants and children receive resources in accordance with the prevalence of the infection among them.

Another key success has been the AIDS Drug Assistance Program. New therapies and improved systems of care have led to impressive reductions in the AIDS death rate and the number of new AIDS cases. From 1996 to 1998, deaths from AIDS dropped 54% while new AIDS cases have been reduced by 27%. However, these treatments are very expensive, do not provide a cure, and do not work for everyone.

Much has occurred to change the course of the AIDS epidemic since the last reauthorization. A whole new class of therapeutic drugs called anti-retrovirals have been developed and people are living longer and the rate of increase of the number of new AIDS cases has begun to level off. AIDS, HIV, the people it infects and families that it has affected are not in the news today as often as they have been in the past. But for too many of us, this lack of bad news has created a false sense of complacency. The epidemic of HIV continues to grow, to infect whole new groups of people, and to expand both within our urban areas and beyond to our rural communities.

While the rate of decline in new AIDS cases and AIDS deaths is leveling off, HIV infection rates continue to rise in many areas; becoming increasingly prevalent in rural and underserved urban areas; and also among women, youth, and minority communities. Local and state healthcare systems face an increasing burden of disease, despite our success in treating and caring for people living with HIV and AIDS. Unfortunately, rural and underserved urban areas are often unable to address the complex medical and support services needs of people with HIV infection.

The bill being introduced today was developed on a bipartisan basis, working with other Committee Members, community stakeholders and elected officials at the state and local levels from whom we sought input to ensure that we addressed the most important problems facing communities of people with HIV infection. Earlier this month, I held a hearing before the Committee on Health, Education, Labor, and Pensions to learn whether the program has been successful and whether it needed to be changed. We received testimony from Ryan White's mother, Jeanne White, from Surgeon General David Satcher, from a person living with AIDS, as well as state and local officials familiar with the importance of this program. I especially want to commend Dr. Chris Grace of Vermont who testified as to the particular challenges of providing care to people living with HIV/AIDS in rural, and sometimes remote, parts of the country. It was clear from our witnesses' statements that, despite the successes, challenges remain.

To address these challenges, we have developed a bill that will improve access to care in underserved urban and rural areas. My bill will double the minimum base funding available to states through the CARE Act to assist them in developing systems of care for people struggling with HIV and AIDS. The bill also includes a new supplemental state grant that will target assistance to rural and underserved areas to help them address the increasing number of people with HIV/AIDS living outside of urban areas that receive assistance under Title I of the Act. Furthermore, these areas will be given preference for direct care grants and we have strengthened the AIDS Drug Assistance Program to supplement those states struggling to provide lifesaving drugs to their HIV/AIDS patients.

We have not changed the unique flexibility of CARE Act programs; it remains primarily a system of grants to State and local jurisdictions. States and EMAs will still decide how to best prioritize and address the healthcare needs of their HIV-positive citizens.

Today, there are few people who can say they have not been touched by this epidemic. Recently, I had the opportunity to visit with Jeanne White. We talked about the impact of this disease; about the loved ones it has taken, and the damage to the lives of those it has left behind--about the infected, and about the affected. We talked about her son Ryan, and about my good friend David Curtis of Burlington, Vermont, who testified before my committee in 1995, but who passed away just last year. As an advocate of the program and as a person living with AIDS, David helped me to understand the terrible impact of this disease. Ryan White and David and countless others, worked long and hard to ensure that all people affected by AIDS could receive both the care and compassion they deserve.

The AIDS epidemic, despite our success in developing treatments and providing systems of care, is still ravaging communities in this country. This program remains as vital to the public health of this nation as it was in 1990 and in 1996. As the AIDS epidemic reaches into rural areas and into underserved urban communities across the country, this legislation being introduced today will allow us to adapt our care systems to meet the most urgent needs in the communities hardest hit by the epidemic.

I intend to see this bill become law this year so that the people struggling to overcome the challenges of HIV and AIDS continue to benefit from high quality medical care and access to lifesaving drugs. We have made incredible progress in the fight against HIV/AIDS and I want to be sure that every person in America that needs our assistance, benefits from our tremendous advances.

Over the last two decades, our Nation has made tremendous advances in responding to the HIV/AIDS epidemic. We've all been encouraged by the recent reports that the number of AIDS cases dropped last year for the first time in the 16 year history of the epidemic. The new combination therapies largely responsible for this change in course have brought new hope to families devastated by this disease. Although it was unimaginable just a few years ago, it now appears possible that we may soon view AIDS, if not as curable, than at least as a manageable, chronic illness.

But, despite these advances in treatment options, the HIV/AIDS epidemic remains an enormous health emergency in the United States, with the number of AIDS cases in the U.S. nearly doubling during the last five years. According to a study sponsored by the U.S. Public Health Service, approximately 250,000 to 300,000 people living with HIV or AIDS currently receive no medical treatment. Therefore, while we must sustain our efforts in the areas of research and education, it is also critical that we continue to provide resources to help states and disproportionately affected communities develop the necessary infrastructure to provide HIV/AIDS care. One of the most important changes made to the Ryan White programs by this Reauthorization Act is the emphasis on the need for early diagnosis of the disease. This new emphasis is reflected in the bill's provisions relating to early intervention activities, which will support early diagnosis and encourage linkages into care for populations at high risk for HIV.

In the decade since the enactment of the Ryan White CARE Act we've seen a transformation in the face of AIDS. Since women and children are disproportionately represented among the newly infected, I am especially pleased that this bill provides for the coordination of Ryan White and State Children's Health Insurance Program (SCHIP) funds, and includes a set-aside for infants, children, and women proportionate to the percentage each group represents in the eligible funding area's AIDS affected population.

During the decade of the Ryan White CARE Act, we've also seen a shift in the challenges facing providers. Ten years ago, Ryan White providers focused primarily on helping people while they died. Now, more and more, providers are moving into the business of helping individuals infected with HIV live long and full lives. But, while the discovery of powerful drug therapies has improved the quality and length of life for many who are HIV positive, access to these drugs and to other critical health services is still difficult for many, since AIDS is fast becoming a disease of poverty. The CARE Act's AIDS Drug Assistance Programs remain a lifeline for low-income individuals who cannot afford the costs of regular care and expensive AIDS drug regimens (now estimated at $15,000 annually per person).

The CARE Act has made a difference to the lives of countless individuals and families affected by a devastating disease. While there is hope for the future, the changing demographics of the disease present new challenges. The Ryan White CARE Act Amendments of 2000 address these challenges while maintaining those aspects of the Act that demonstrate proven results. I look forward to working with Congress as we move forward with the reauthorization, so that the thousands of people who rely on the services of Ryan White programs can continue to maintain their dignity and quality of life.

Last year alone, the Ryan White CARE Act served an estimated half million people living with HIV and AIDS and affected the lives of millions more. Nearly 6 in 10 of these people were poor. Last year, this legislation enabled approximately 100,000 people living with HIV and AIDS to receive drug therapy. This is particularly important because half of the people served by the Act have incomes less than $10,000 a year--and the new drug treatments cost more than $12,000 annually.

According to the National Center for Health Statistics, between 1995 and 1997, there has been a 30 percent decline in HIV related hospitalizations, representing a savings of more than $1 billion. Since 1991, according to Sandra Thurman, Director of the Office of National AIDS Policy, the CARE Act has helped to reduce AIDS mortality by 70 percent; to reduce mother-child transmission of HIV by 75 percent; and to enhance both the length and quality of life for people living with HIV/AIDS.

The epidemic is far from over. Each year there are 40,000 new HIV infections in the U.S., and the death rate is no longer dropping so quickly. Although people with HIV disease are living much longer, the highly touted multi-drug therapies are beginning to fall short of their prayed for effectiveness, and they do not work for everyone.

In addition, the nature of the epidemic is changing. HIV/AIDS is devastating communities of color. AIDS is the leading cause of death for African-Americans aged 25 to 44, and the second leading cause of death among Latino Americans of the same age group. HIV/AIDS also disproportionately affects younger Americans. Half of the 40,000 new infections each year occur in individuals under age 25. AIDS is killing the youngest, potentially most productive members of our society. Without a renewed commitment to research, prevention, and culturally sensitive treatment, the rates of infection and death will continue to ravage communities of color.

It is a testament to the success of this legislation that there is such unanimity among the committee members and all of the diverse group of stakeholders that the Ryan White Care Act needs to be reauthorized. The amendments included in this legislation are designed to increase the accountability of the overall program; to meet the challenges of the changing nature of the epidemic; to improve the quality of care; and to reach those affected by this plague who have not been reached before. We often say `Leave no child behind' and everyone agrees. We must also say, `let's leave no one afflicted by this dread disease untreated'.

Provisions for quality management around clinical practice will bring best practices to patients. Holding grantees accountable for quality management and relevance of programs means the money appropriated will be well spent. This is good medicine and responsible lawmaking.

Allowing for flexibility in how the AIDS Drug Assistance Program (ADAP) funds are spent will provide more low-income individuals with life-prolonging medications. Focusing on early intervention services to support early diagnosis will get patients into treatment faster and hopefully also slow the spread of the disease. Requiring grantees to develop and maintain linkages with key points of entry to the medical system, such as mental health and substance abuse treatment centers, will dramatically improve treatment, slow the spread of the disease, and reach previously unserved people. This is good prevention.

In 1990, the HIV/AIDS epidemic was primarily limited to large cities; hence the majority of funds were granted to cities. Over the last decade, unfortunately, the epidemic has spread to more rural areas and to different populations. This bill requires that funds be spent in accordance with local demographics. Several provisions in this bill will allow more funds to go to less populated areas and to provide special grants for infants, youth and women. This is good allocation of resources based on needs.

This bill also contains fiscally responsible caps on administrative costs, and requires all grantees to coordinate with Medicaid and the State Children's Health Insurance Program. This makes good fiscal sense.

Mr. President, the Ryan White CARE Act has saved lives and serves hundreds of thousands of needy people yearly. The Ryan White CARE Act has a proven record of success; let's build on that success. This federal legislation needs to be reauthorized now, as proposed, to meet the continuing needs and new challenges presented by the changing nature of the HIV/AIDS epidemic.

That is why I urge all Senators to join in cosponsoring and passing the Ryan White CARE Act Amendments of 2000, and I urge the members of the Appropriations Committee to provide the funds to fully implement it.