[Congressional Record Volume 142, Number 59 (Thursday, May 2, 1996)]
[Senate]
[Pages S4646-S4649]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       RYAN WHITE CARE ACT AMENDMENTS OF 1996--CONFERENCE REPORT

  Mr. DOLE. Mr. President, I submit a report of the committee of 
conference and ask for its immediate consideration.
  The PRESIDING OFFICER. The report will be stated.
  The legislative clerk read as follows:

       The committee on conference on the disagreeing votes of the 
     two Houses on the amendments of the House to the bill (S. 
     641), a bill to reauthorize the Ryan White CARE Act of 1990, 
     and for other purposes, having met, after full and free 
     conference, have agreed to recommend and do recommend to 
     their respective Houses this report, signed by all of the 
     conferees.

  The PRESIDING OFFICER. Without objection, the Senate will proceed to 
the consideration of the conference report.
  (The conference report is printed in the House proceedings of the 
Record of April 30, 1996.)
  Mrs. KASSEBAUM. Mr. President, I rise in support of the conference 
report on the Ryan White CARE Act Amendments of 1996, S. 641. This 
bipartisan legislation reauthorizes critical health care programs which 
provide services for individuals living with HIV and AIDS. Accordingly, 
I urge the Senate to move expeditiously to pass this conference report, 
which has already moved through the House with near-unanimous support.
  The Ryan White CARE Act plays a critical role in improving the 
quality and availability of medical and support services for 
individuals living with HIV disease and AIDS. As the HIV epidemic 
continues, the need for this important legislation remains.
  Achieving a compromise on the Ryan White CARE Act reauthorization 
bill has been a long process, and I am delighted to see it come to a 
completion. The give-and-take involved in the conference rarely leaves 
everyone satisfied with every aspect of the final agreement. I believe, 
however, that the compromise bill offers constructive change, and I am 
particularly pleased that it provides greater equity for rural states 
through changes in the funding formulas.
  The present distribution formulas have led to disparity in funding 
for individuals living with AIDS based on where they live. When the 
CARE Act was first authorized in 1990, the epidemic was primarily a 
coastal urban-area problem. Now it reaches the smallest and most rural 
areas of this country. Our agreement ensures that the amount of Federal 
AIDS support for an individual in a rural State more closely 
approximates the support for an individual living in a high AIDS 
population area. This agreement ensures that any individual living with 
AIDS, regardless of where he or she lives, will have similar support 
from the Federal Government.
  Mr. President, with any formula change, there is always concern about 
the potential for disruption of services to individuals now receiving 
them. To address this concern, the bill maintains hold-harmless floors 
designed to assure that no entity receives less than 95 percent of its 
1995 allocation over the next 5 years, and all entities are held 
harmless in fiscal year 1996.
  The Senate-House HIV testing compromise shifts the emphasis from 
mandatory testing of infants to voluntary testing of pregnant women. It 
provides $10 million to help States meet CDC guidelines for voluntary 
HIV counseling, testing, and treatment for pregnant women. I believe 
the emphasis on voluntary testing for pregnant women makes sense and is 
an appropriate compromise. Medical technology today enables us to 
greatly reduce the chance that a HIV-positive mother will pass HIV to 
her newborn if she receives proper treatment prior to delivery. This is 
why I felt it was so critical to focus our Federal resources on 
voluntary testing of mothers rather than testing newborns, when it 
would be too late to try to prevent most HIV transmission.
  I believe that the changes proposed by this legislation will assure 
the continued effectiveness of the Ryan White CARE Act by maintaining 
its successful components and by strengthening its ability to meet 
emerging challenges.
  Putting together this legislation has involved the time and 
commitment of a wide variety of individuals and organizations. I want 
to acknowledge all of their efforts. I particularly appreciate the 
constructive and cooperative approach which the Senate conferees, 
Senators Jeffords, Frist, Kennedy, and Dodd, lent to the development of 
this legislation. I wish to thank both the Senate and the house 
conferees for their efforts in crafting the compromises reflected in 
this conference bill.
  I also wish to thank their staffs, including Sharon Winn, Susan 
Ramthun, Jonelle Rowe, M.D., Joe Musker, Michael Iskowitz, Seth 
Kilbourn, Jane Loewenson--as well as Marty Ross, M.D., James Wade, M.D. 
and Kent Bradley, M.D. of my staff--for their hard work in reaching 
this agreement.
  Mr. KENNEDY. Mr. President, it is a privilege to join Senator 
Kassebaum in

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bringing to the Senate floor the conference report for the Ryan White 
CARE Reauthorization Act of 1996. This is critically important 
legislation and I am pleased that after months, an agreement has 
finally been reached.
  For 15 years, America has been struggling with the devastating 
effects of AIDS. More than 1 million citizens are infected with the 
virus. AIDS itself has now become the leading killer of all young 
Americans from ages 25 to 44. AIDS is killing our brothers and sisters, 
parents and children, friends and loved ones--all in the prime of their 
lives. This epidemic knows no walls and has no mercy.
  More than 500,000 Americans have been diagnosed with AIDS. Over half 
have already died--while the epidemic marches on unabated.
  The epidemic is now a decade and a half old, but almost 40 percent of 
the AIDS cases in this country have been diagnosed in the last 2 years. 
Another American gets the bad news every 6 minutes. Each day, 100 more 
of our fellow citizens die of AIDS.
  As the crisis continues, it becomes more and more difficult for 
anyone to pretend that AIDS is someone else's problem. There are few of 
us who do not know someone who is either infected or affected by AIDS. 
In a very real way, we are all living with AIDS.
  In 1990, AIDS advocates and service providers gave us the sound 
advice that the development and operation of community-based care 
networks could help shore up the Nation's overburdened health system, 
and improve the quality of life and efficiency of services for 
individuals and families living with AIDS.
  In response, and in the name of Ryan White and all the other 
Americans who had lost the battle against AIDS, Congress passed the 
Comprehensive AIDS Resources Emergency Act, called the CARE Act. With 
broad bipartisan support, we put people before politics, and took 
constructive action that has made a world of difference.
  America can take satisfaction that, in difficult times, sometimes we 
get it right. In the case of the CARE Act, we have.
  The act contains a series of provisions that have reduced inpatient 
hospitalization and emergency room visits--and allowed more than 
300,000 Americans with HIV disease to live longer, healthier, and more 
productive lives.
  Title 1 of the act provides emergency relief for cities hardest hit 
by AIDS.
  Title 2 provides funding for all 50 States to organize and operate 
HIV care consortia, to offer home care services and lifesaving 
therapeutics, and to continue private insurance coverage for those who 
would otherwise fall onto the public rolls.
  Title 3 funds community health centers and family planning clinics 
which offer primary care and early intervention services to those 
living with HIV in underserved urban and rural communities face an 
increasing demand for care.
  Title 4 links cutting-edge pediatric AIDS research with family 
centered health and support services to meet the unique needs of 
children, youth, and families with HIV.
  Title 5 funds national demonstration projects for HIV populations 
with special needs, including teenagers, minorities, the homeless, and 
Native Americans.
  Together, these titles put in place a strong national response with a 
proven track record of success that has saved both money and lives.
  In Boston, the act has led to dramatically increased access to 
essential services. Because of the act, 15,000 individuals are 
receiving primary care, 8,000 are receiving dental care, and 9,000 are 
receiving mental health services. An additional 700 are receiving case 
management services and nutrition supplements. This assistance is 
reducing hospitalizations, and is making an extraordinary difference in 
people's lives.
  While our response has changed significantly since 1990, the 
brutality of the epidemic remains the same. When the act first took 
effect, only 16 cities qualified for ``emergency relief''. In the past 
5 years, that number has more than tripled.
  This crisis is no longer limited to major urban centers. Caseloads 
are now growing in small towns and rural communities, along the coasts, 
and in America's heartland. From Weymouth to Wichita, no community will 
avoid the epidemic's reach.
  We are literally fighting for the lives of hundreds of thousands of 
our fellow citizens. This reality challenges us to move forward 
together in the best interest of all people living with HIV. And that 
is what this conference report seeks to do.
  This bill acknowledges that the HIV epidemic has expanded its reach, 
but we have not forgotten its roots. While new faces and new places are 
now affected, the epidemic rages on in the areas of the country hit 
hardest and longest.
  The pain and suffering of individuals and families with HIV is real, 
widespread, and growing. All community-based organizations, cities, and 
States need additional support from the Federal Government to meet the 
needs of those they serve.
  The revised formulas in this legislation will make desperately needed 
resources available to cities and States, based on the number of people 
living with HIV disease. These changes will increase the availability 
of medical care and the support services to individuals with HIV in 
many cities, including Boston, and in many States.
  Equally important, the compromise will ensure the ongoing stability 
of the existing care system in areas of the country with the greatest 
incidence of AIDS. The HIV epidemic in New York, San Francisco, and 
Miami is far from over--and in many ways, the worst is yet to come.
  Finally, the compromise includes a provision promoting voluntary HIV 
counseling, testing, and treatment for pregnant women as part of 
comprehensive prenatal care.
  Thanks to recent research advances, we now know that this sound 
public health approach will save countless young lives. Doctors, 
nurses, public health officials and AIDS organizations have all called 
for this responsible action.
  This aspect of the bill is a dramatic departure from the provisions 
contained in the House bill, which focused on mandatory testing of 
newborns. That approach is both too little and too late. In addition, 
it is likely to prove counterproductive for achieving the goal of 
preventing HIV in newborns or prolonging the lives of children infected 
with HIV.
  The participation and cooperation of parents and physicians is 
essential if children are to receive the care they need. Mothers must 
be involved in the health care system, not alienated from it. Mandatory 
testing programs threaten to drive women away from essential services, 
for fear of losing their health care or the custody of their children. 
This is especially true for poor women and IV drug users who are at 
high risk for HIV, but who are also often highly mistrustful of the 
health care system.
  An HIV test by itself does not guarantee needed participation, and 
does not ensure access to care. It does not provide access to health 
insurance or to necessary followup treatment. It does not mean that a 
mother will be able or willing to follow a complex treatment schedule.
  Doctors, nurses, patients, and all those on the front lines of this 
epidemic agree that to maximize the potential for appropriate care, the 
relationship between a woman and her health provider must be based on 
compassion, confidence, and trust.
  Coercive, mandatory procedures are hostile to such a relationship and 
hostile to the American tradition of respect for the doctor-patient 
relationship.
  The compromise contained in the conference report focuses on the 
promising strategy of offering voluntary HIV counseling, testing, and 
treatment to pregnant women. States are given the time and the 
resources to implement the CDC guidelines and to begin to save lives.
  Medical professional and public health officials have expressed 
serious concerns about Congress withholding funds unless they 
implemented a program which they do not believe is in the best interest 
of those they serve. Under this bill, no doctor or State will be forced 
to implement a program of mandatory HIV testing of newborn during this 
reauthorization cycle.
  No State will be forced to implement a mandatory testing program at 
all unless, first, the Secretary of HHS decides that such a program has 
become the standard of practice; and second,

[[Page S4648]]

the State is unable to achieve a significant reduction in HIV 
transmission from mother to child by the year 2000. This compromise 
allows States to keep their eyes on the goal, rather than divert their 
attention or resources to a strategy they believe is wrong.
  If States do implement mandatory testing programs, this provision 
requires that States have in place protection against insurance 
discrimination based on HIV status or based on the fact that an 
individual has undergone HIV testing. This protection adds to the 
protection already provided under the Americans With Disabilities Act 
[ADA].
  Under the ADA, an insurance company or an employer cannot place 
different requirements or restrictions on people with HIV or AIDS than 
they place on people with diseases of similar financial risk. This 
protects against insurance discrimination based on fears and myths, 
rather than objective actuarial and financial considerations.
  The requirements in this provision add to those of the ADA, and 
prohibit insurance discrimination against individuals who have simply 
undergone HIV testing. The ADA has an important provision which 
protects people who are perceived to have HIV or AIDS. Many people who 
have undergone HIV tests, and are subsequently discriminated against, 
may be perceived as having HIV and are thus protected by the ADA. But 
this provision makes clear that such individuals may not be 
discriminated against in insurance, whether or not they are perceived 
as having HIV.
  The reason for this provision is clear. As I have noted, I do not 
believe mandatory testing is appropriate. But if a State ultimately 
chooses to fulfill its obligations under this law by enacting such 
testing, it must also ensure that comprehensive insurance protection is 
in place. Congress has already ensured significant protection when we 
passed the ADA. These State laws or regulations will complement such 
protection.
  Like most compromises, it is not perfect and it will not please 
everyone. But on balance, it is a fair one. We have sought sound 
policy. We have listened to those on the frontlines. And we have 
attempted to support their efforts, not tie their hands.
  With the enactment of this conference report, Congress has put aside 
political, geographic, and institutional differences to face this 
important challenge squarely--and in all likelihood, successfully.
  In these times of partisan politics and scarce resources, it is a 
tribute to the effectiveness of this landmark legislation that Congress 
voted nearly unanimously to continue this program--and to provide a 
$105 million increase for this year.
  This action will sustain and expand the act's lifeline. It will 
provide better care and support for hundreds of thousands of 
individuals and families caught in the epidemic's path.
  The Ryan White CARE Reauthorization Act, however, is about more than 
Federal funds and health care services. It is also about caring and the 
American tradition of reaching out to people who are suffering and in 
need of help. Ryan White would be proud of what is happening in his 
name. His example, and the tireless commitment of so many others, are 
bringing help and hope to our American family living with AIDS.
  I am pleased that the House of Representatives passed the conference 
report earlier this evening by a vote of 402 to 4 and I urge my 
colleagues to unanimously approve this critically important conference 
report.
  Before we take final action, I would like to thank the committee 
staff who have worked tirelessly on this legislation and made it 
possible for us to reach this point. First and foremost, I would like 
to thank Michael Iskowitz of my staff, who was instrumental in the 
development of this act in 1990, and who has been indispensable 
throughout this reauthorization process.
  I would also like to thank Seth Kilbourn who, during his detail with 
the Labor Committee, proved invaluable to our efforts. Finally, I would 
like to thank Senator Kassebaum and her able staff, including Kent 
Bradley, Jim Wade, and Marty Ross. This has been a solidly bipartisan 
effort and I am grateful to the chairman and her staff for their 
cooperation and collaboration.
  I ask unanimous consent that my remarks, a summary of the legislation 
and of the voluntary testing compromise be printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                    Ryan White AIDS CARE Act Summary


                   Title I--Disaster Relief to Cities

       Provides emergency assistance to metropolitan areas hardest 
     hit by the AIDS epidemic. Urban areas with more than 2,000 
     diagnosed AIDS cases qualify for such assistance (FY91=16 
     cities, FY93=24 cities, FY95=42, and FY96=48 projected 
     cities). Funds are used for outpatient health care and 
     support services for individuals and families with HIV 
     disease to enhance quality of life and to reduce inpatient 
     hospitalization. Funds go to mayors who must establish an HIV 
     Planning Council to assess need and allocate resources.
       Authorizes such sums as may be necessary in FY96-00. Actual 
     appropriations: FY91=$87 million; FY92=$122 million; 
     FY93=$184.8 million; FY94=$325.5 million; FY95=$356.5 
     million; and FY96=$391.7 million.


                  Title II--HIV Care Grants to States

       Provides for the development, organization, and operation 
     of effective and cost efficient systems for the delivery of 
     essential health care and support services to individuals and 
     families with HIV disease in both urban and rural areas. 
     Eligible uses of funds include:
       (1)--local consortia capable of delivering a comprehensive 
     continuum of care;
       (2)--home health care services;
       (3)--assuring continuity of health insurance coverage; and
       (4)--paying for HIV related therapeutics.
       All states must set aside not less than 15 percent of funds 
     for the delivery of health and support services for infants, 
     children, women and families with HIV disease.
       Authorizes such sums as may be necessary in FY96-00. Actual 
     appropriations: FY91=$87 million; FY92=$108 million; 
     FY93=$115.3 million; FY94=$183.9 million; FY95=$198.1 
     million; and FY96=$260.8 million.


            Title III--Early Intervention Categorical Grants

       Provides early intervention services through categorical 
     grants to public and non-profit entities including community 
     and migrant health centers and others which deliver primary 
     health care. Individuals who test HIV(+) receive the 
     diagnostic and therapeutic services in order to benefit from 
     medical advances.
       Authorizes such sums as may be necessary in FY96-00. Actual 
     appropriations: FY91=$44 million; FY92=$49.8 million; 
     FY93=$47.9 million; FY94=$47.9 million; FY95=$52.3 million; 
     and FY96=$56.9 million.


             Title IV--Children, Youth, Women and Families

       Provides grants to appropriate public and non-profit 
     entities that offer primary care to coordinate the delivery 
     of health care and support services with experimental 
     therapies for women and children with HIV to increase access 
     to services and clinical trials.
       Authorizes such sums as may be necessary in FY96-00. Actual 
     appropriation: FY94=$22 million; FY95=$26 million; and 
     FY96=$29 million.


        helping to reduce hiv transmission from mother to child

       The Senate-House HIV testing compromise contained in the 
     Ryan White conference report shifts the emphasis from 
     mandatory testing of infants to voluntary testing of pregnant 
     women. Focusing on voluntary testing of pregnant women rather 
     than mandatory testing of newborns is the approach supported 
     by medical professionals and public health officials as the 
     most effective means of preventing perinatal transmission of 
     HIV. The compromise contains the following provisions.
       Provides $10 million to assist states in implementing the 
     CDC guidelines which call for voluntary HIV counseling, 
     testing, and treatment for pregnant women. For states to 
     access these funds, they must have adopted the CDC 
     guidelines.
       Within 4 months of enactment (Sept. 1996), the CDC, in 
     consultation with states, must develop and implement a system 
     for states to gather data related to perinatal transmission, 
     to document reduction in such transmission.
       The Secretary of HHS is directed to contract with the 
     Institute of Medicine to evaluate the extent to which state 
     efforts have been effective in reducing perinatal 
     transmission of HIV and to analyze the existing barriers to 
     further reduction in such transmission. Within two years of 
     enactment (May 1998), the Secretary shall report these 
     findings to Congress along with any recommendations made by 
     the Institute.
       After 2 years and 4 months (Sept. 1998), the Secretary of 
     HHS will make a determination of whether mandatory HIV 
     testing of all infants born in the US whose mothers have not 
     undergone prenatal HIV testing has become routine practice in 
     the provision of health care in the US. This determination 
     will be made in consultation with states and experts.
       If the Secretary determines that such mandatory testing has 
     become routine practice, after an additional 18 month period 
     (March 2000), a state will not continue to receive Title 2 
     Ryan White funding unless it can demonstrate one of the 
     following:
       (1). A 50 percent reduction (or a comparable measure for 
     states with less than 10

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     cases) in the rate of new AIDS cases resulting from perinatal 
     transmission, comparing the most recent data to 1993 data;
       (2). At least 95% of women who are received at least two 
     prenatal visits prior to 34 weeks gestation have been testing 
     for HIV; or
       (3). A Program for mandatory testing of all newborns whose 
     mothers have not undergone prenatal HIV testing.
  Mr. JEFFORDS. Mr. President, I am proud to be an original cosponsor 
of the Ryan White CARE Act; I am proud to have served on the conference 
committee for this very vital legislation; and I am proud to be here 
today to speak in support of the bill's final passage. As most of us 
are aware, AIDS has become one of the most difficult and complicated 
public health threats in recent memory. For this reason, the Ryan White 
CARE Act is important not only for to those already infected with HIV 
or suffering from AIDS--as a public health bill, this legislation is 
important for all of us.
  We've said it a number of times before, but it bears repeating: AIDS 
is now the leading killer of men and women ages 25 to 44. AIDS has 
killed over 300,000 people since the beginning of the epidemic in the 
early 1980's--but half of those people, 154,077, have died in the past 
2 years. The Centers for Disease Control estimates that nearly 1 
million people are now infected with HIV, the virus that leads to AIDS. 
Clearly, then, AIDS is challenging our health care system in ways it 
has not been challenged before.
  We discussed this bill at length nearly a year ago, so I want to take 
a few minutes to remind my colleagues of the valuable programs they 
will help to support today. As I've already mentioned, the bill 
provides health services to those already living with AIDS. It also 
relieves pressure from our critical care units and emergency rooms by 
utilizing early intervention techniques with AIDS and HIV patients.
  The programs we're reauthorizing today work at the local level, and 
they're cost-effective--two things we've tried hard to stay focused on 
in this Congress. The Ryan White CARE Act funds community based 
organizations to provide needed outpatient care at the local level in 
the most cost effective and efficient ways possible for the populations 
that need help the most. One study even indicated that a person 
receiving outpatient managed care spends 8 fewer days in the hospital 
than a person not receiving such care--resulting in a cost savings of 
over $22,000 per person.
  Dollars from the CARE Act increase the availability of critical 
outpatient primary care services; they provide support services; and 
they improve the quality of life of those living with HIV. In Vermont, 
CARE Act money is used primarily to provide pharmaceuticals to people 
with HIV and AIDS who need drugs, but cannot afford them.
  Successful outpatient care keeps people out of the hospital, improves 
their quality of life, and saves money for the system. When early 
interventions and primary care are used successfully, the health care 
system saves untold dollars in unused emergency health services. From a 
purely fiscal perspective, we cannot afford not to fund these programs.
  Finally, let me remind my colleagues that this is not a disease from 
which we can remove ourselves so easily as we might expect. Any of us 
who previously felt confident we could not be touched by HIV or AIDS 
because AIDS affects other people must now reexamine those assumptions. 
Soon we will all have friends whose lives have been touched by this 
disease. I had the honor of hosting one of my friends, David Curtis, at 
a Labor Committee hearing on this bill. The face of AIDS is changing, 
it is affecting the people I know and the people we all know.
  If we and our loved ones are affected, I know we will want adequate 
resources to be available to help with prescription drugs, health care 
and support services. The Ryan White CARE Act is an assurance that help 
will be available. So for my friend, David Curtis and the millions of 
other Americans affected by HIV, I hope my colleagues will join me in 
supporting final passage of the Ryan White CARE Act.
  Mr. DOLE. Mr. President, I ask unanimous consent that the conference 
report be deemed adopted, the motion to reconsider be laid upon the 
table, and that any statements relating to the conference report be 
included in the Record at the appropriate place.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The conference report was agreed to.

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