Remarks on the Ryan White CARE Act

by Orrin Hatch (R-UT)
July 26, 1995
Text from the Congressional Record
( source, with video)
—

Mr. HATCH. Madam President, they are trying to put together a final agreement so that they can go out tonight. Until they do, let me take a few minutes and express myself on the Ryan White bill.

Madam President, people are dying. People are dying and we have the chance today or tomorrow to enact legislation that will really make a difference–really make a difference in their lives, and the lives of their families and friends who love them.

We have the chance to enact legislation that will help alleviate some of the pain and suffering of individuals who are infected with HIV.

We have a chance to enact bipartisan legislation showing that Congress cares more about people–about people who are critically ill and need our help–than about how those people got ill.

Madam President, in 1981, two physicians unknown to each other, on opposite ends of the United States, made similar observations that they would then publish in their respective medical journals.

They noted that a small group of their otherwise healthy patients were becoming infected with organisms that would normally affect individuals who were for some reason immune-suppressed. In layman’s terms–these patients had a weakened immune system.

By the end of the following year, 1982, almost a thousand cases of the disease had been reported to the Centers for Disease Control. Congress had appropriated $8 million for research to combat this mysterious virus.

Over the next few years, the number of such cases dramatically increased and began to spread throughout the country, as did our realization that the virus, now called acquired immune deficiency syndrome, AIDS, was not going to be eradicated overnight.

Funding for research rose to $44 million in fiscal year 1983, $104 million in fiscal year 1984 and by fiscal year 1990 had reached $3 billion. By 1987, there were cases in each of our 50 States.

As I look back, I recall how AIDS began to touch on each of our daily lives, as the number of cases grew, and the need for increasing research and service-related funding for this growing epidemic.

We began to expand funding beyond the Department of Health and Human Services, to the Department of Defense, the Agency for International Development, and the Bureau of Prisons.

We funded the Department of Labor, the Department of Housing and Urban Development and the Veterans Administration. We provided funding through the Federal Employees Health Benefits Program.

Our response grew with the magnitude of the disease, as it should continue today.

As I think back to the early days of AIDS, and how the growing numbers of infected individuals and the resultant death toll caused this country so much alarm and panic.

Unfortunately, as with any unsuspected crisis, the immediate response from many–including members of both houses of Congress–could be characterized as denial, anger, and blame. Fortunately, over time, our compassion has grown for those infected with this insidious virus, as our understanding about the causes of and treatments for this devastating disease increased.

As I look back, I think of the swift reaction of our health care community, yet how painfully clear it was that both our research and service delivery infrastructures lacked the capacity to address the growing number of cases of HIV infection.

I talked about our growing research effort. I did not talk about the dedication of our scientists, and their ensuing frustration, as a cure–or even a vaccine–continued to elude our grasp.

Today, they still remain outside our grasp.

As I look back, I recall how the service delivery programs evolved–the AIDS service demonstration projects, the home and community-based health services grant programs, and the AIDS drug reimbursement program–yet we still could not keep pace with the need for services in our communities.

They came out of our Labor Committee, and we were proud to authorize those programs which have really served to help people. But they were not enough.

Out of this great need for community-based, compassionate care was born the Ryan White Comprehensive AIDS Resources Emergency [CARE] Act of 1990, a bill I was pleased to author with my colleague from Massachusetts, Senator Kennedy.

We named the bill after Ryan White, a courageous, intelligent and caring young man from Indiana, who worked tirelessly to educate others about HIV and AIDS. Ryan helped replace fear and indifference with hope and compassion. One of the great lessons of his life–that we should not discriminate against those with the HIV virus of other illness–remains true today. His tireless efforts, indeed his legacy, is being carried on by his mother, Jeanne White. And I met with her a number of times. And I have to say she is doing a good job.

There are so many others who have spoken out with the same spirit and eloquence, including Mary Fisher, founder of the Family AIDS Network, who is a tireless crusader against AIDS, and our much-missed friend Elizabeth Glaser, who established the Pediatric AIDS Foundation which has done so much to improve the lives of children infected with HIV.

I can remember when she first walked into my office. I did not know a lot about pediatric AIDS. I knew about adult AIDS. But I did not realize so many children were being infected at that time. When she walked in and explained it to me, I have to say we decided to help her. Our colleagues, Senator Metzenbaum and others, helped her raise her first million dollars for the Pediatric AIDS Foundation at a wonderful dinner here in Washington, DC and she went on from there to raise several more million dollars in the fight against AIDS, and, of course, she is one of the most valued heroines in this country, as far as I am concerned. There have been so many unnamed others in countless communities across the Nation.

Today, we have before us reauthorization of the Ryan White CARE Act.

My message is simple: it is an important act. It must be reauthorized.

The need continues.

Let me discuss a few dramatic facts in order to highlight the tremendous impact of this disease and explain why this bill should be passed.

The most revealing fact is that the No. 1 cause of death for males aged 29 to 44 is now AIDS.

In the last decade, the proportion of cases represented by women has almost tripled.

Even in my small home state of Utah, it is estimated by the Department of Health that there are 5,000 people infected with the HIV virus. To date, 1,110 have been diagnosed with full-blown AIDS, and 644 have died.

Indeed, our knowledge of AIDS has expanded dramatically since those early days.

We now know that AIDS is not a gay disease, or a Haitian disease.

We know that it cannot be transmitted by casual contact.

We know that it affects man, woman and child, whatever race, whatever nationality.

AIDS does not play favorites. It affects rich and poor, adults and children, men and women, rural communities and the inner city.

We know much, but the fear remains.

Madam President, things have changed since 1990. But the need for this legislation remains.

The number of cases continues to increase. At the end of 1994, the Centers for Disease Control and Prevention had recorded 441,528 cases of HIV. The number continues to grow.

The emotional and economic burden for HIV patients and their families is substantial, and it continues.

The Ryan White CARE Act has made a difference and should continue to make a difference.

There is so much that remains to be done.

Since its enactment in 1990, the Ryan White AIDS Care Act has provided the necessary assistance to those persons and their families affected by the AIDS epidemic. Often, the funding provides for models of HIV service delivery that are considered to be some of the most successful health care delivery models in history.

I am very proud of Utah’s Ryan White program. Let me tell you of some of our accomplishments.

Ryan White funds were used to establish a home health services program which provides much needed homemaker, health aide, personal care, and routine diagnostic testing services.

A drug therapy program has been established that offers AZT and other drugs to individuals infected with HIV.

Ryan White funds have been used to provide health and support services through an HIV Care Consortium, which offers vital services such as dental, mental health counseling, transportation, benefits advocacy, eye exams and glasses, legal advocacy, information and education, nutrition counseling, and substance abuse counseling.

These are programs which are in place and which are working. They should be continued.

I believe it is vital that we reauthorize the Ryan White Act.

Madam President, many have noted that AIDS brings out the best and worst in people. Let us hope that this debate reflects the best of the great American traditions of reaching out to those in our community.

I plead with my colleagues today, and I will tomorrow, let us not backslide on this. I wish to compliment the distinguished chairman of the Labor and Human Resources Committee, and the ranking member, Senators Kassebaum and Kennedy, for the work that they have done and for the courageous way that they have gone about it and for the work they have done on the floor here this day. I personally respect both of them very much, and I appreciate what they are doing in this bill.

Our progress has been great, but we have so much more to do to wipe out this virus. Let us hope and pray that one day, like smallpox, the HIV virus will be eradicated as a public health problem, and that is what we are talking about, public health, for everybody. Until then, Ryan White programs offer the only glimmer of hope to thousands of Americans who are living with HIV.

So I wish to thank my esteemed colleagues, especially our floor managers today, Senators Kassebaum and Kennedy and others who have worked so hard to move this important piece of legislation forward. I will work with them in any way I can to see that this legislation is sent to the President as quickly as possible, and I again hope that we can do this probably tomorrow morning.

I thank the Chair.

[Page: S10725]