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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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