Remarks to the 2002 Ryan White CARE Act Grantees Conference

Prepared Remarks of Deborah Parham, Ph.D.
Associate Administrator for HIV/AIDS, Health Resources and Services Administration

Washington, D.C.
August 20, 2002

I want to welcome each of you to what, for me, is always a momentous gathering. 

When individuals who run Ryan White CARE Act programs get together in the same room, I feel their energy and their compassion for people.

I feel the urgency that you feel to confront the AIDS epidemic.

There are so many here today. 

You are the breathing soul of this inspirational national program founded 12 years ago. 

From a grassroots call for federal emergency help to fight this epidemic, you have become a model for the nation’s health care system.

Before I proceed any further, however, I want to pause to reflect on one of the reasons we all continue to work so passionately in our fight against this epidemic. 

I invite those of you who can to join me in standing for a moment of silence in remembrance of those we have lost to AIDS - our family members, our patients, our partners, our friends and colleagues. 

Thank you.

For those that have had the opportunity to review the agenda I believe will agree that we have put together a fabulous conference. 

We have been actively planning for this meeting for over a year and I would like to acknowledge everyone who worked on the planning committee:

Please join me in thanking them for all of their hard work to put this meeting together.

I’d also like to introduce my senior management team. 

You will have many opportunities to interact with all of us throughout this week.

Reflecting on CARE Act Accomplishments

Today, I want to briefly review what the CARE Act has accomplished, what our programs look like today, and close with an observation on our years ahead.

As Dr. Duke mentioned in her remarks, we have been challenged to work together to run the CARE Act programs more effectively.  

We accept that challenge.

I believe that we have been successful as a CARE Act community by working together, learning from each other and by doing the hard work behind the scenes. 

Together, we have accomplished much.

I’d like to share a few facts that make my point.

SLIDE 1 - # Served by CARE Act

Each year, CARE Act programs serve more than five hundred thousand (533,000) individuals living with and affected by HIV disease.   As the young people say, that’s an awesome number!

SLIDE 2– CARE Act Spending

SLIDE 3 - # Served by CARE Act - Medicaid

The $1.9 billion CARE Act is the third largest payer of HIV care, after Medicaid and Medicare.

Hospital expenditures are a large portion of the Medicaid costs you see here. 

The CARE Act programs help reduce Medicaid spending because we help keep people out of hospitals.

SLIDE 4 - # Served by Titles I and II

More than four million health care visits were funded by Titles I and II in the year 2000.

SLIDE 5 – Number Served by ADAP Data

In calendar year 2000, State ADAPs reported serving 128,078 enrolled clients, an increase of 8 percent from 1999.

Of the total clients, 26 percent were first time clients.

SLIDE 6 - Title III Clients and Poverty Status

SLIDE 7 - Serving the Underserved

SLIDE 8 - Race/Ethnicity of CARE Act Clients

As you know, AIDS hits many groups hard.

Gay and bisexual men, underserved minority individuals and women of color are some people who are increasingly becoming infected with HIV.

Our data show that you, the CARE Act programs, are serving those with HIV who are most in need.

To illustrate, three-fourths of new clients under the Title III program are at or below the federal poverty line.

In calendar year 2000, one-third of CARE Act clients were female, primarily women of color.

To put that in perspective, only 25% of new AIDS cases were women.

69% of CARE Act clients are minority individuals while only 62 percent of all AIDS cases in 2000 were minorities.

We also know that a large proportion of CARE Act clients enter care with serious problems besides HIV disease, such as substance abuse, mental health, and homelessness.

There are other things that the CARE Act has done that are harder to put out there as numbers.

But they are no less important. 

I want to highlight a few initiatives that have been done by the Bureau in partnership with many of you.

These are just examples.  I know that there are many more projects into which many of you have put much time, energy and heart. 

SLIDE 9 – HAB Initiatives – Examples

At the Bureau, we worked closely with the Centers for Disease Control and Prevention to update HIV counseling and testing guidelines so that HIV testing can become a better tool for our care and prevention work.

We also have initiatives at the Bureau like:

• our Guide to the Clinical Care of Women with HIV – the only such book in the world
• our quality initiatives
• the Primary Care Assessment Tool
• our work internationally on palliative care, program evaluation and provider training
• expanded provider training through our AETCs
• our efforts to do better needs assessments and other planning, and
• integrated data reporting through the new CARE Act Data Report.

Reflecting on the Reach of CARE Act Services

SLIDE 10 – Map of Locations of CARE Act Grantees

 So, where are CARE Act programs located?

 Every state and territory has at least one CARE Act program. 

 I see all of your wonderful flags out there and I hope you don’t mind that we asked you to sit with your state today, so to speak. 

Of course, I also hope you get out and meet and mix with your colleagues from around the country, the territories and Pacific jurisdictions during the rest of the week. 

Your presence around the nation, territories and Pacific is more extensive than ever before because the number of grantees has grown.

You are, of course, located in 51 Title I areas but also can be found in many other places – some urban, some suburban, some rural and frontier.

There are now 310 Title III early intervention services programs providing community-based early access to care for people living with HIV.

The targeted needs of women, infants, children, youth and families are now being addressed through the work of 90 Title IV projects, up from 65 grantees a few years ago.

In 2001, funds were awarded to 74 dental education programs that served approximately 29,000 individuals.

Today, 119 research and demonstration grants under our Special Projects of National Significance (SPNS) program are looking for model ways to provide HIV care, such as our initiatives on outreach and transitional care for incarcerated persons with HIV.

The nation’s network of 14 AIDS Education and Training Centers operating in 70 sites, trained around 56,000 providers in nearly 3,500 trainings over the last year.

SLIDE 11 – AIDS Deaths Bar Chart

The most remarkable statistic I can cite is one you’ve heard before. 

But it is still amazing: AIDS deaths have dropped from around 38,000 in 1996 to around 15,000 in 2000.

I believe that the CARE Act programs played a huge role in this astounding turnaround in the epidemic.

We certainly acknowledge the role of improved antiretroviral drug regimens, but we would not be seeing such results if people didn’t take the drugs. 

CARE Act programs work with clients to establish a plan of care, they help pay for the drugs, help patients adhere to these medications, monitor their health status, and support our clients in many ways beyond taking medications. 

So, yes, you should take some credit for this decrease in the number of deaths from AIDS.

And for that, you should give yourselves a hand.

I urge you to take a look at the CARE Act Progress Report that is being released today at this conference. 

It’s called The AIDS Epidemic and the Ryan White CARE Act: Past Progress, Future Challenges and it outlines much of what we in the CARE Act community has accomplished. 

In this publication we also plot the changing epidemic and the challenges we are going to face tomorrow and over the coming years.

We’ll have opportunities over the next four days to learn more about how we achieved so much and, more importantly, how to use those insights in the future and we meet the challenge of becoming even more effective. 

Observation on Meeting Goals: Dealing with Change

I want to wrap up my comments by reflecting on the word “change.” 

Much of why we’re meeting this week is to learn how to deal with change. 

It is also our challenge in the years ahead.

But change is really an expected part of the CARE Act. 

Even though we hold onto many CARE Act goals like community decision-making and creating a continuum of care, we’ve seen lots of change as the legislation has been amended not once but twice since its start in 1990. 

And you have been extremely flexible as the epidemic has shifted and clinical care has evolved.

We work hard to keep up with the epidemic and you can see it in the changes that are in the CARE Act Amendments of 2000. 

These Amendments are an effort to anticipate change and outline how to deal with it. 

To put it in the simplest of terms, the Amendments are about getting more people into care.

They’re about serving people better. 

And they’re about using resources more wisely. 

But it’s more complicated than that. 

As the saying goes, the devil is in the details! 

These details include things like improving access to care, quality management, assessing unmet need, coordination, outreach, diversity in planning and decision making, and capacity development.

Changes Today Make HIV Care More Complex Than Ever

I know that you are up to the task of dealing with change because you’ve done it before and continue to do it everyday. 

But I also know that the challenge is harder today than it was in the past when HIV care was more about comforting people who had few treatment options. 

Today, we may have more to offer people living with HIV disease. 

But life with HIV has become more complex as well. 

SLIDE 12: Future Challenges

So, what are our future challenges?

There are more people living with HIV disease today in the U.S. than ever before. 

People with HIV are poorer and their needs are more complex. 

Many people with HIV are also living with substance abuse, mental illness, homelessness, hepatitis C and other chronic illnesses.

People with HIV are still entering care late in their disease. 

Antiviral therapy is complex to adhere to, has side effects and the medication options have run out for some.   And

Care providers are being asked to take on the role of prevention as well because we need to do a better job in bringing down the number of new HIV infections each year, and the clinic is a place to try and address that issue.

CARE Act Community Is Up to the Challenge

Yes, you are being asked to do more.

Just as the CARE Act set a standard of care in its beginning 12 years ago, it can do a better job in serving underserved clients as part of an HIV system of care that is increasingly serving the same people reached by the nation’s public health safety net.

But HIV has always been unique - often kept apart because of stigma about the disease and who the disease most affects. 

I invite you to look around the room at the quilt panels.

These quilt panels symbolize that uniqueness more clearly than words ever could.

They’re each unique but also bound together—by fabric, by circumstances, and by the spirit that lives through the good work that you carry out every day.

And so I thank you for what you do and I thank you for who you are.

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