Darlene: My name is Darlene Tucker.
I'm 57 years old.
Welcome to Harlem USA!
I met my second husband and he introduced me to cocaine.
I was 29 years old.
All that got me was this.
It was a bad time in my life.
My second husband is the one that infected me and never told me.
I was told when Roosevelt Hospital called me and told me that he was in there.
It was an ugly situation.
We were divorced and I had gotten married again and now I get this news, and it was
- I was pregnant, I was furious.
During the birth of my son, at 3 months he developed the fever.
And they told me he had the virus.
His stay at the hospital was terrible.
Me and my husband had to stay in there, were sleeping on the floor cause they nurses - they
wouldn't even go in the room.
People were just treating [you] terrible.
Dr. Peter G. Gordon, M.D: HIV is really the medical challenge of our time.
In many ways it cuts right into the issues that many people find most compelling; from
providing care, which is the impact of lack of resources and sometimes the lack of social
equity that leads to disproportionate burden of illnesses, often times communicable, and
this is like HIV, among the world's poorest and disenfranchised population.
There may be that, we're on the, continue down the cusp of just remarkable scientific
breakthroughs, but we're not there yet.
Darlene: I was brought in by the ambulance.
Dr. Gordon is a great doctor.
I wouldn't trade him for anything.
Some doctors have a way of talking down to you.
He never did that.
Your self-esteem is shot when you're a recovering addict or an alcoholic.
You know, you're trying to recover, you slip up, you know, you relapse, it's a part of
recovery.
When I started getting my care here and I had a doctor that I could really talk to and
answered my questions.
And when he talked to me about certain things, it made me want to know more.
And I think people should be educated, and Ryan White, they have been instrumental in
that, especially with women of color.
Dr. Gordon: One of the most amazing recollections I have of these early days when I got to know
Darlene, acting as the attending on service, was coming to her room after she moved from
the ICU to the general medical floor, and while she was bedbound and probably eighty
pounds and barely able to lift her arms, she had her young son coming every night to the
hospital and sitting at her bedside so she could stay on top of his homework assignment.
Darlene: We have the special needs clinic here.
Dr. Gordon: The special needs clinic is really remarkable mental health clinic that really
focuses on the needs of the entire family.
Those kinds of services, I think, help keep the family together during that period of
time.
Without Ryan White funding, I don't know where we
would have marshaled those resources.
If the person has an untreated mental health disorder or chemical dependency issues, or
has access problems, transportation issues, or housing challenges,
or not access to a stable supply of food, each of these things either individually or
collectively can result in them not being able to access the service which are available
to be utilized.
When you talk about these programs that support not just direct medical care, but housing,
and access to care coordination, they are just as critical as the antiretrovirals.
Darlene: I don't believe that these programs didn't exist, that we would have the quality
of life that we have or that any of us would be living this long.
Dr. Gordon: I thing that one of the things that HRSA, through the Ryan White Care programs
identified early on was barriers to engaging in care that exists for vulnerable populations
need to be overcome.
She received mental health services from a clinic here, a medical center that received
Part D resources.
Similarly, the treatment adherence program that she was in when she first sort of acquired
the ability to continue to take her medications in an allowable fashion was funded from
Part B dollars.
She's an example of a person who had the incredible internal drive and ability to change a pattern
which was sort of lifelong to a healthier life and it was really made possible by the
programs that were supported by the Ryan White Care Act.
We applied for a HRSA SPNS grant in 2007, built around the notion of something called
the continuity of care record - standard snapshot of very critical demographic and clinical
and care coordination information.
One of the things that certainly contributes to the fractionation of care and dis-coordination
of care is the silos of clinical information that exist in different care sites and social
service agencies.
And so we ask the question of whether or not we can put back that power in the hands of
consumers and what we found was that people were eager to be trained and many times it
was the first time individuals who ever sat down at a computer terminal and opened up
a browser and were quite liberated by not just learning how to access their medical
records but to take that access and use it to promote a sort of self-efficacy and understanding
of chronic illnesses and different diagnoses, with their medications.
The SPNS grant that was made possible by HRSA, I think, would demonstrate for the first time
that the vulnerable populations with marginal health literacy will adopt a personal health
record at rates similar to more affluent, more educated populations.
Darlene: If I know I will get my nursing license - I say when I get my nursing license, I'm
going to work with young people and HIV.
Especially for the girls, because they believe the good old okeydokey boys who tell them
about why they don't need condoms.
They can give you fifty reasons why they shouldn't use them, but can't come up with one good
reason why they should.
I decided I was going to educate myself on the virus, and I went through several programs.
I went and earned a certificate.
I graduated from Arrive; I went to Smart, which is for women that are positive, and
we had nutrition, computer classes, Fridays we had medical.
Dr. Gordon: So as you can tell, as Darlene tells the story of the courses that she took,
it's changed the way you and I talked about behavioral health issues.
You have become incredibly sophisticated in your understanding of how all the pieces have
to fit together and all the side effects and challenges.
When you come in and tell me something, I listen because I know you know your stuff.
And when you came in and told me that you wanted to go back to school and do nursing,
I think you'll do it.
It's a great goal.
Darlene: My family is very important to me because I don't ever want them to feel the
alienation that I felt from my own family and I don't want them to alienate from one
another.
For my granddaughters, I don't want to leave that example.
I don't want them [to see] that their grandma was a bum, you know?
I'm sorry my daughters saw it but I really put my grandchildren - I want that - this
time I'm not going to stop.
I know if I keep coming here I won't.