A biologia básica do vírus HIV e da doença que ele causa, a Aids. Os fatores econômicos, sociais e políticos que determinam quem adoece e quem permanece saudável, quem vive e quem morre . O progresso da pesquisa científica e dos tratamentos médicos. Razões para esperança; razões para o medo. (Para ver alguns dos materiais que os alunos postaram no fórum do curso, vá para @AIDSFAH ou #AIDSFAH)
03.02 - Memories of the Beginning: Detroit
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Do curso por University of Michigan
AIDS: medo e esperança
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Unit 3 - Testing (and Some Politics and Memories)
The Critical Issue--Testing
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Richard Meisler, Ph.D.Lecturer
Department of American Culture, University of Michigan
Today's session is another conversation about the beginnings of the epidemic.
It is an excerpt of a longer conversation with Leon Golson.
Who works at our local AIDS service organization in Michigan.
Before I introduce Leon, let me tell you about the agency where he works.
The organization is called the HIV/AIDS Resource Center, HARC.
You will hear Hawk mentioned rather frequently in this course because several
of the people from Hawk have been guest speakers in my on campus course on HIV and
AIDS, and they have agreed to help in this version of the course also.
Hawk operates primarily on federal funds from the Ryan White CARE Act.
Will learn more about that legislation in future sessions.
If you are watching this video in the United States,
there's probably a similar AIDS service organization in your region.
Hawk has two missions.
The first is to provide services to people living with HIV.
And a future session, we will hill from Shayana Watson.
Who has worked at Harc as a case manager for HIV positive people.
The other side of Harc's work is education and prevention.
This is basically outreach into the community.
Both to gen, to the general public.
And to groups that are at increased risk of HIV infection.
This brings us to Leon Golson.
Leon is director of prevention at R HARC.
He has also worked at other AIDS organizations in Michigan, and
at the American Red Cross.
When he comes to my on campus course, and also in many other settings, he gives
an introductory HIV AIDS presentation, which he refers to as HIV 101.
You'll hear him mention that in his conversation when he
describes a talk with his mother.
As you hear Leon was infected with HIV early in the epidemic, and
he remained healthy for quite a few years.
Much later when triple drug therapy became available Leon started in treatment,
and he has remained healthy.
Let's discuss, for a moment,
the period in which Leon was healthy before the drug treatment was available.
Leon likes to talk about the HIV in his body as being weak.
This is probably metaphorical, and in another person's body.
The same virus might well lead to serious illness rather quickly.
As he says later, Leon is probably a member of
a small group of people who are referred to as long-term non-progressors.
These people have a genetic mutation which dramatically slows the progress.
Of the infection.
We will learn more about this in a future session, but for
now, let's hear Leon's memories of the beginning of the epidemic.
Leon, I've already introduced you, and your experience, and
work that you've done.
I want to thank you for coming year after year to my on campus class.
To make presentations about HIV and AIDS.
You've been an invaluable resource, and I'm so happy that you're here to
to talk with me in this context for so many online students.
>> Well, thank you for having me.
>> Your work.
And HIV and AIDS goes back
to experiences that you had early in your life going back to high school.
And I wonder if you tell us a part of that story just to get started.
>> Sure, sure.
First of all, I'd like to say that becoming HIV infected.
Doesn't take place in a vacuum.
So, there's a series of events, issues,
situations, whatever you want to title them, that can lead a person in a time and
space where they find themselves at risk for HIV.
And it's no different for me.
And for me it all got started back in high school.
I did not enjoy my high school experience whatsoever,.
>> Mm-hm.
>> Because I was one of those students that didn't have a click.
I didn't fit in.
Not a popular student at all.
And I didn't have a car, I had to catch the bus.
You know, didn't wear the latest fashions, I had whatever Kmart had on sale.
>> These days you're a pretty fashionable pretty popular guy.
>> I try, I try.
>> [LAUGH].
>> I've made up for some lost time there.
>> huh, uh-huh.
>> Some other major things in high school, that, led to
it being very uncomfortable was you know, one of the big things was having sex.
And of course, I wasn't having sex with anybody.
So socially, I didn't fit in.
And then on top of all of that, I was struggling with issues of self esteem.
Poor communication, and coming to terms with my sexual orientation.
So, all of that.
Compounded and really didn't get addressed appropriately.
And then shortly after graduating, trying to get a relationship to happen.
>> Mm-hm.
>> And not knowing what a healthy relationship's supposed to look like.
And I end up over-compensating and putting myself at risk for becoming HIV infected.
>> How old were you, and what years was that?
>> Well, I graduated from Finney High School in 1978.
And in our years at Finney, no-one ever came out and
presented any useful information.
So when my school body graduated,
we were not prepared to deal with HIV in any shape, form or fashion.
I got my first HIV diagnosis was probably the mid 80's.
>> Mm-hm. >> For me,
so not too long after, after getting out of high school.
>> Do you remember when you first started hearing about AIDS?
>> Yes, I do.
And that was early 80s.
>> Mm-hm. >> And the first
piece of literature I got was through the mail about it.
And it was kind of surreal.
>> Mm-hm.
>> It really was.
That's the booklet that described it.
>> Do you think that was the Surgeon General's I think.
>> That's exactly.
>> Had went to every.
>> Yes, that's what it was.
>> And it went to every household in America.
>> Yes. >> I mentioned it briefly in, in.
Our session on the Reagan administration.
>> Mm-hm. >> That is one thing the one real
attempt at educating the people.
So it seemed surreal to you.
>> It did, it did.
And, you know, reflecting back on that, that day I got it in the mail it was like-
>> Uh-huh.
>> What is this really you know?
Didn't really give it much thought.
>> And do you recall in those years hearing about people who died or
knowing people who died?
>> No, that did.
That I did actually experience a number of deaths probably about.
A year to two years after getting my diagnosis.
>> Mm-hm. >> That was one of the rougher times for
me and my infection, because just as I was coming to terms with the fact that I was
infected, I also had to attend a number of funerals of really good friends of mine,
who shortly after graduating, just as I did, got infected, but.
Of course, their strain in the virus was much more aggressive than mine.
>> Mm-hm.
>> So, I'm standing over their casket, sweating bullets,
wondering when is my turn going to come up.
because back then there was still a lot we didn't know about the virus,
how it worked, what the progression was going to be.
>> Mm-hm.
Mm-hm.
And, how did you come to be tested?
>> What go me out the door to go get tested,
was when I woke up one morning with oral thrush.
It's a yeast infection.
And that freaked me out because I don't like anything going on with my mouth.
>> [LAUGH]. >> So, I went out, got tested and
I was very pessimistic thinker back then.
So I kind of.
You know, I thought to myself most likely I got this AIDS thing that I
got in the mail.
>> Mm-hm.
>> And sure enough, two weeks after I got the, thrush cleared up, I went and
got tested and found out I was positive.
>> Mm-hm.
>> So, it wasn't this traumatic scene, you know, of oh my God, you know.
It was kind of like, yep, that figures.
>> Looking back,
do you know or have ideas about the occasion on which you were infected?
>> Okay.
For me I suspect it was with the partner I was with at the time that I got infected.
>> Mm-hm. >> And.
I don't know for sure.
>> Mm-hm.
>> Because when we both met, we both had a history of being with other people.
>> Mm-hm.
>> So, there's a good possibility,
we were both positive day one of our relationship, and just didn't know it.
>> Mm-hm.
>> Yeah.
>> Well, I've heard you tell.
part, the part of your story that involves your family.
>> Mm-hm. >> Especially your father.
>> Mm-hm.
>> And that's so interesting.
And people are always interested in how families really react.
Could you tell us that story?
>> Sure, sure.
I have four younger sisters.
And I'm of course the oldest and the only.
Son in the family.
And we come from scary parts of Alabama, even scarier Baptist upbringing.
My childhood years were pretty rough years, to put it lightly.
My father was very verbally and physically abusive to my mother, myself, and
my sisters.
So I had all that, that led into high school and even in high school it,
kind of, escalated a bit, the violence within the home.
So when I found out that I was positive, I had to think about, at some point,
who I wanted to share this information with.
And I had to think about my family.
because I didn't want my mother getting a phone call in the middle of the night.
From a hospital saying Ms. Golsen come see your son now, he's about to die from AIDS.
I felt she deserved a little better than that.
But I didn't have a clue how I was going to have this conversation with her.
So, at the time, this was probably the late 80s that, this played out.
There was a little information that I got my hands on about HIV.
>> Do you remember how you got that information?
>> I believe I got it through I want to say,
the Red Cross had some information that I got my hands on.
And I took it to my mother's house.
We lived about 15 minutes apart from each other in Detroit.
And that's when I did my first HIV 101 was with her.
So, she didn't asking of me personally, just about how the virus worked.
I left the information there with her,
and about two weeks from that day, I'm at my kitchen sink thinking to myself,
okay I'm going to call my mother up now, and tell her I'm infected.
Hopefully this won't send my family further over the edge.
Because we were just hanging on as a family with out fingertips.
>> So this was a chaotic family, and you >> Yes.
>> Your fear was.
That this was going to be.
>> Exactly.
This was going to push it over the edge, [CROSS-TALK] and make it worse.
It was just going to rip the family further apart, so
I turned from the kitchen sink to reach for the phone to call my mother.
And it rings before I can pick it up.
And guess who's on the other end, my mother.
She goes Leon, I go yes, mam.
She goes, are you infected with HIV?
I went, whoa, was just about to call and tell you that.
And her response was not what I had played out in my mind it was going to be.
She was just a supportive and loving and caring.
She didn't judge.
She didn't preach from the Bible.
It was wonderful.
>> Mm-hm. >> During our conversation, she said,
do you want your sisters to know?
I said, yeah, you can tell them.
She said, do you want your father to know?
We kind of both went, uh-uh, no we're not going there.
We're not going to have that conversation with them, it was not going to happen.
We both decided we would wait until I was moments from dying and then we
would tell him, because he likes to hear people and call them by their name.
Mm-hm.
>> And it wouldn't matter then.
I'm going to be dead in a few minutes, you know?
>> So, you were all pretty scared.
>> Yeah, we were.
We were.
But the fates didn't have it to work that way.
I had an opportunity, long ye, long time ago to do an commercial for
the state health department, speaking as a person living with HIV.
So I took them up on that opportunity, because that was my 15 minutes of fame.
>> Okay. >> So I went for it.
>> Before today, now your have.
>> Oh, yes. >> Another 15 minutes fame.
>> Another 15 minutes of fame.
>> [LAUGH].
>> And did the commercial.
My father's sister saw the commercial.
She called him up and said, you know your son's on TV talking about HIV and AIDS?
So there was a phone message for me that night.
Leon your father knows you're infected, you better call him.
That's from your mom.
>> Yeah, so I get, gather what strength I had, take a deep breath,
call my father up on the phone and I'm ready, ready for the worst case scenario.
Ready to be cussed out, disowned, because that's how he responds to things.
So I'm,
you know, call him up, call him up like dad, I heard you found out I'm infected.
He's like yeah, how you been doing?
You taking care of yourself?
You been eating right?
Do you need a ride to the doctor?
Do you need money for medication?
At that point, I look at the phone and wonder, where is my real father?
>> Yeah. >> Because this is not the man that,
you know, has been going up inside my head all these years.
So, during the conversation, he kept asking,
why was he just finding out about this.
And I kept trying to avoid answering that question.
He kept asking.
So, finally, I took another deep breath and I said, really quickly.
The reason you're just finding out is you're not the easiest person in
the world to talk to about anything.
And I got real quiet because I knew the storm was going to come.
Nope, it was he got quiet, he asked me some more questions.
We ended our conversation on a very nice note.
And from that day forward the abuse just stopped.
It just stopped.
>> That's such an interesting and beautiful story.
how, is your dad still alive?
>> Oh, yeah.
>> How's he doing?
>> He's doing great.
He's doing great.
>> Mm-hm. >> He's a lot nicer to be around.
And it actually, the fact that I disclosed actually brought my
family closer together versus ripping us apart.
But you couldn't convince me.
That it wasn't going to rip us apart.
And that's a fear with a lot of people today,
who haven't disclosed it to their family.
That is going to cause more turmoil.
But it had the opposite effect for me and my family.
So, it was really weird getting that first I love you.
And the first hug.
It was really weird.
And it took a minute to get used to that.
Well, it's so wonderful that that happened.
>> Yeah, yeah.
>> that, that brings us up to maybe the middle or late 1980s.
>> No, '90s.
>> Early '90s.
>> Early' 90s.
Mm-hm.
And the how have you been doing since then?
>> So far so good.
Family still in my corner every step of the way.
>> Mm-hm. >> T cell count,
my white cell count has been holding steady at about six, seven hundred.
And I've been undetectable since I started medications.
Which was in the early '90s.
>> Mm-hm. >> So.
>> Mm-hm.
>> So far so good.
>> I think that was probably 96 or 97.
I don't think we had a triple drug therapy until then.
>> Exactly until the mid to late '90's.
>> Yes, yes.
>> Mm-hm. >> We're you sick before then?
Before your treatment started?
>> No, I don't.
Recollect having any type of physical complications due to my HIV infection.
>> Andy thing like the Thrush?
>> Other than the Thrush, that was it.
>> Mm-hm.
>> Nothing since then.
>> Mm-hm.
>> Of course when I started my first regiment of meds,
which were 14 pills a day, that came with some severe and unpredictable diarrhea.
>> Mm-hm. >> Which through a cramp in
my presentation, presentation style.
>> Mm-hm. >> So, that had to get switched.
>> Mm-hm.
And when we were talking about this recently, I think you told me
that you were in a small category of infected people known as low progressors.
>> Long Term Progressors.
>> Long Term Progressors, right.
>> Yeah. Yeah. >> And we will,
when we have doctors visiting with us they'll explain that but that's.
Part of the explanation.
>> Mm-hm. >> You have a genetic makeup.
>> Hm. >> That has made things move along very,
very slowly.
>> I think so.
I, I like to think of my virus as a little like me.
It's kind of old and slow and in no particular hurry to do anything so.
>> Yeah. >> Whenever you say that,
it makes me feel so old.
>> [LAUGH]. >> It does.
>> [LAUGH].
>> I'm older than you.
>> [LAUGH].
>> And how's your.
Routine of doctors visits and medication going.
How many pills a day do you take now?
How often do you see a doctor?
How are you doing?
>> I see doctors once in at least four times a year.
And I'm doing quite well.
>> Mm-hm. >> He's a great doctor.
I'm taking one.
Pill for a day for my HIV.
>> Mm-hm.
>> infection.
It's called Stribild.
>> Mm-hm. >> And
it has three different medications in it.
>> Mm-hm.
>> In addition to that, of course, I take a vitamin supplement.
He's got me on aspirin therapy.
Cholesterol medication.
And I take a joint supplement too because I'm a figure skater so
gotta make sure the joints work.
>> Mm-hm.
>> so, so far so good.
We got the- >> Are you still skating?
>> Oh, yes, trying to rotate an axil.
>> Okay.
>> Light a candle for me.
>> Okay, we'll be watching for you in the Olympics.
>> [LAUGH] Don't hold your breath for that one.
That surpriser.
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