Remarks to the Ryan White CARE Act All-Grantee Meeting

by HRSA Associate Administrator Deborah Parham Hopson

August 28, 2006
Washington, D.C.

Good morning, everyone.

I'm very glad to be here today and I know that you are as well. Isn't it great to have a chance to get away from the day-to-day and focus on the bigger picture? In my frenetic world of work and family and trying to keep up with a two-year-old, that doesn't happen very often. And I see a few smiles in the room, so I guess you're struggling with some of the same issues. I know I saw several children in the hotel yesterday. The fact is that most days there just isn't time to stop and to ponder. The short-term problems are there. Those problems are big. They are very real. And so that's what we tend to focus on.

For those of you working on the front lines it can be helping a client who has lost her housing or a young man who is struggling with adherence issues. For me it may be dealing with the latest departmental deadline or answering yet another question on ADAP or the Title I formulas. But then we have those special days. We hear or read something that puts us back in touch with the vision that brought us to this work.

That was the case earlier this year when I picked up an article about the history of AIDS in the United States.

The article I'm referring to was written by Michael Hirson. It was published by Massachusetts General Hospital in their periodical called proto. Hirson began his article like this:

Twenty-five years ago, casual sex carried little fatal risk, and homosexuality was seldom discussed in mainstream society. But all that changed during the summer of 1981, when several gay men in New York and California died of rare infections their bodies should have fought off with ease.

Hirson goes on to say that the

new affliction was soon christened with what became a terrifying acronym - AIDS. [It] led to seismic shifts in sexual attitudes and forever changed the relationship between patients and the medical system.

I want to repeat that last part:

It forever changed the relationship between patients and the medical system.

Hirson goes on to describe how the epidemic changed the lives of four people. Their careers led them straight into the face of the storm that was building in the early 1980s. Each recalls the moment when he or she came face to face with the strange new disease.

For Anthony Fauci, now Director at the National Institute of Allergy and Infectious Diseases, it was when his mentor asked, "Why are you diverting a great career for a disease involving 40 people?"

For Robert Gallo, whose destiny was to co-discover HIV, it came when a speaker asked, "Where are the virologists?' who need to be addressing this disease.

Mathilde Krim is a research scientist who became founding chair of the American Foundation for AIDS Research. Mathilde, who grew up in Europe during the Holocaust, knew that AIDS was her fight when she saw fear and indifference toward those who were different.

Bruce Walker was still an intern in 1981. His defining moment came when a patient asked, "I feel great. Am I still going to die?" Walker, now a professor of medicine at Harvard, is still haunted and inspired by that question.

There are several things that struck me in Hirson's article. One is that you and I stand on the shoulders of people who changed their lives to address AIDS in the early part of the epidemic. I know it sounds like a cliché. But the fact is: if it weren't for them, you and I may not be here.

Second, I believe that there are new Tony Faucis and Mathilde Krims in this room. We may read about you one day. Or perhaps your work will be known only by your patients and your colleagues. Either way, you are absolutely incredible.

Third, you and I have something that people in the first years did not have. It is impossible to put a price-tag on it. That "something" is the sense of community and common purpose we share with one another. We should never take that for granted.

And of course Hirson's article reminded me of the importance of understanding our history. I want to focus on that this morning.

In 1905, the poet George Santayana said,

"Those who cannot remember the past are condemned to repeat it."

This familiar statement is important for us.

We have been dealing with AIDS for more than 25 years now. We have a proud and rich past. Think about it.

When other medical staff wouldn't go into an HIV-positive person's hospital room, we did.

When catering staff left meal trays outside patients' doors, we picked them up and walked right in.

When families left sons and daughters to suffer in silence and die alone, we provided companionship. We provided compassion. We provided caring.

In other words, we went to the frontlines, even when we couldn't see them clearly. Initially, we could see only that people were coming to hospital emergency rooms. Most were admitted to ICUs and most quickly died.

So, in those early years, we responded by improving hospital-based care.

People like nurse Cliff Morrison in San Francisco helped his hospital build the country's first AIDS Ward. This ward meant that people were less exposed to discrimination and stigma from within the health care system. It meant that people would be cared for by people who wanted to care for them.

Helen Miramontes - a mother of six who didn't become a nurse until she was 39 - helped bring training to hospital staff and clinicians who weren't comfortable with the strange new disease or with those living with it.

By the mid-1980s, we were beginning to learn what we were dealing with - and none of what we were learning was good.

We knew that AIDS destroyed livelihoods, created dependence, and early death.

We knew that communities were struggling to respond.

We knew that we were dealing with an infectious agent.

And we knew that it was going to get worse.

Suffering was everywhere. In ICUs. In hospices. In apartments where people were dying alone, and in a small Indiana town where a boy named Ryan was waging a battle to be just another boy.

Stigma and discrimination were getting in his way. Ryan fought back with dignity and grace. He gave us courage, and to an America not ready to stop the blame game, he gave us a blameless face of AIDS. So to Jeanne White-Ginder, I say thank you for Ryan.

While people like Ryan and his mom, Helen and Cliff, and Tony and Mathilde played their roles, thousands of others played theirs. Case managers. Physicians. Nurses. Social workers, and Advocates.

Dr. Donna Sweet is one example. Born in rural Kansas, Dr. Sweet never lived in a house with indoor plumbing until she was awarded a scholarship and went to college. Over the past 25 years, she has taken HIV/AIDS care to virtually every corner of her state.

While Dr. Sweet was starting a clinic in Wichita, Dr. Ellen Moore was seeing some of the first children living with HIV/AIDS in Detroit. She has played a pivotal role in adapting treatment guidelines for children. Today, 85% of Dr. Moore's patients have undetectable viral loads.

Despite the work of so many, the epidemic not only continued, it grew. The need for care and support outstripped community resources. Hospitals were overwhelmed. Families were overwhelmed. Social services agencies were overwhelmed. Help was needed.

It was the politically potent gay and lesbian rights movement that first brought this message to Washington. Their work offers a real lesson about what can be achieved when we make democracy work.

It was in no small part due to their efforts that, by 1987, we saw the first Federally-supported AIDS care projects. But they did not stop - and they were joined by those of thousands of providers, of consumers and their families. Allies within government were at work, too. Congressional staffers like Tim Westmorland and Michael Iskowitz ensured that legislation moved forward. These combined efforts embodied community action as it has seldom existed before. Its result was passage of the Ryan White CARE Act on August 18, 1990.

Ryan had died four months earlier. The death toll from AIDS in the United States numbered over 100,000. Not even military personnel working in times of war are prepared to see so many young people die.

Passage of the CARE Act opened a new chapter in HIV/AIDS services in the United States. Successes of the program began almost immediately.

We provided services that reflected our understanding about the role of compassion. From the very beginning we realized that money does not equal care. We knew that, instead, Compassion + Know-how = Care. Money merely fuels the distribution mechanism.

We also used our capacity to develop comprehensive care, and then to deliver it to our clients. We owe consumers a great debt for this capacity, because it is they, more than anyone else, who taught us that if care was going to mean anything, it had to reflect the needs of the individual.

Take the case of a girl we call "Amy." Part of her story is printed in our 2006 Progress Report.

Amy is an 18-year-old woman living in Detroit. Amy was born HIV-positive. She lost both parents to AIDS. Her mother's family disowned her because of her disease status and Amy moved from foster home to foster home. Her HIV status was disclosed at school and the taunting became so bad that Amy dropped out.

Through it all, Amy has been supported by her social worker, Janet Nunn, and the entire care team at her clinic in Detroit. It is Janet's job to ensure that Amy gets the medical care and support services she needs. The relationship between Amy and Janet illustrates beautifully that care goes beyond medicine. Amy found a confidant, a friend, and a supporter in Janet -something she had rarely known. Janet helped Amy overcome incredible odds. Amy earned a GED. Today, Amy is in college, and a vision of health, of happiness, and of hope.

I believe that our vision of Compassion + know-how, and our commitment to comprehensive services are the foundation upon which most of our other successes have been built.

Without them, could we have virtually eliminated perinatal transmission in CARE Act-funded clinics?

Could we have provided primary care to historically underserved populations?

Would we have been able to successfully support adherence?

Would we have been able to reach people no one had reached before?

I don't think so.

In a few moments, this plenary will end and we will go about the work of this conference. As we do so, let's not forget that our successes didn't just happen.

Let's not forget what HIV care was like before we started training clinicians.

Let's not forget what services were like before we started listening to consumers.

Let's not forget what care was like before compassion was added to the care and treatment equation.

And let's not forget that the value of care cannot always be measured in T-cells and viral loads.

Just as sure as we faced an AIDS emergency in 1990, we face one today. That is why we have come to Washington this week. It's not the same emergency we faced in the beginning, but it's an emergency just the same. And it affects all of us.

More than 1.1 million people are living with HIV/AIDS in the United States. Many are counting on you and me.

More than 41,000 people become infected each year. Many are counting on you and me.

Hundreds of thousands of HIV-positive people are not in care. Many are counting on you and me.

The bottom line is this. Unless we stay in the fight, unless we bring our compassion to the battle, unless we offer comprehensive services on the frontlines, people will suffer more than they have to. And they will die a lot sooner than they need to.

I believe that you and I stand on a line of demarcation. On one side lies hope. On the other, lies hopelessness.

On the hope side, people live with access to care and the possibility of improved health and quality of life.

But on the hopeless side of the line, there is very little access to care for the uninsured and underserved.

Our job is to bring people over the to the hope side of the line.

Together, we can do that. We are doing it!

We are reaching populations that haven't often been reached.

We are going into communities where many will not go.

We are combining know-how with compassion.

The result is that we are reaching historically underserved people. Did you know that 59% of CARE Act clients are racial minorities and 23% are ethnic minorities?

Did you know that that 1 in 3 is female? That only 11% have any private health insurance? That 50 % live below the poverty line?

Much of our work for the rest of the week is to understand how we can build on these results in the face of some pretty difficult circumstances. As we leave this plenary, I want to repeat something I said a few minutes ago:

Our successes didn't just happen.

They happened because of compassion and know-how. Because of commitment and comprehensive care. Because of funding and a sense of community.

But the most critical component of our success is missing from this list. And it is the same today as it was 25 years ago.

The most critical component of our success is the people called to do this work. The Mathildes and Tonys, the Cliffs, Helens, Donnas and Ellens. The consumers like Amy who have the courage to tell us what they need and the providers like Janet, who have the courage to provide it. The most critical component of our success is the people in this audience today. The most critical component is you.

Thank you.

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