HIV病毒和其引起的疾病AIDS的生物学特点。影响这一疾病的传播和预后的社会、经济和政治因素。科学研究和治疗手段的发展情况。关于艾滋病的恐惧和希望的来源。(想预览课程论坛上已有的材料，请前往@AIDSFAH或#AIDSFAH)
05.03 - Memories of the Beginning: St. Louis and Detroit
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来自 University of Michigan 的课程
AIDS：恐惧与希望
223 个评分
从本节课中
Unit 5 - Caring for Patients
Doctors, Medication, More Politics, More Memories
与讲师见面
Richard Meisler, Ph.D.Lecturer
Department of American Culture, University of Michigan
This is another segment of my conversation with Dr Brown and Ms Corkery.
This is one of those sessions in which I ask people, in this case Dr Brown.
To share their memories of the earliest days of the epidemic.
When I began studying HIV and AIDS, I had some cynicism about he medical profession.
Meeting people like Dr Brown and another physician who you will meet soon,
Dr Riddle, I quickly lost that cym, cynicism.
You'll see why?
Dr Brown, like the other infectious diseases physicians
whom I have met, is a deeply caring person who really connect with her patients.
When they don't do well, she feels their losses very deeply.
When they do well, it is a source of great happiness for her.
Dr Brown's forward looking perspective is also very interesting.
She has lived to see a fatal disease transformed into a chronic disease.
She has a sense that better treatments and perhaps even a cure are on the horizon.
So as she cares for her patients, she wants to see them do well, so
that they may benefit from future advances.
Here is Dr Brown again.
Patty, what are you memories of when things started.
>> Well, you know, as you said, Dick I I actually saw as a fourth
year medical student on an infectious disease rotation, elective rotation.
The first individual diagnosed with AIDS in St Louis County.
It was at St Louis County Hospital.
And I was thinking about infectious disease as a specialty at the time, and
it was just, it was a very frightening, you know, the, the disease
wasn't well understood, the mechanisms of transition weren't well understood.
And, and there was a lot of concern among healthcare providers about you
know ensuring that we weren't putting ourselves and
our colleagues at risk et cetera, et cetera.
You know, very rapidly then you know,
when there was recognition of the cause, the risks for
transmission, what, you now, I think that part settled down very quickly.
But then we really entered a period from the time I started my
fellowship certainly in 1989, until about 1995, 1996,
where AIDS care was extraordinarily challenging, because people were so sick.
And the complexity of illness, the number of infections that they have,
I mentioned to you that we had an inpatient HIV unit.
At any given time during my fellowship, you'd have anywhere in between 18 and
25 patients on that unit.
Every patient was critically ill with multiple complex medical problems,
and just the, the burden of trying to take care of patients was just tremendous.
It was the worst rotation in the sense of how late you stayed, how hard you
worked [LAUGH] of an ID fellowship, because patients were just so ill.
And it was incredibly, incredibly sad.
And it was- >> You lost every one of them.
>> Oh, it.
Well, not every one of them, in that, some people were able to hang on,
and we were able to put the bandages on or the finger in the dam to
tie them over until the time of highly effective therapy, 95, 96.
So I still have-
>> So you kept some of them alive for four or five years until-
>> Yeah, exactly, exactly.
>> Until medicine caught up.
>> But many people died and these are for the most part, young people.
>> Mm-hm.
>> In the prime of their life and
as a physician, I think, you can't help on a personal level.
You identify strongly with people.
In fact, it's been interesting to me, as I've gone though the phases of my life,
you know, I don't identify strongly with 25 year olds [LAUGH] anymore because I'm
much older than that.
But I identify now so
strongly with the mother, for example, of a young because I'm a mother.
You know, it, you identified so strongly.
These were young people.
These were people in the prime of their life and it was just very, very sad.
And I visited the HIV hospice that we had.
A Hospice of Southeastern-
>> Mm-hm. >> Michigan had
opened this beautiful facility, Franklin Manor.
And I always went and visited my patients there when they went into hospice.
I tried as best I could if not to go to funeral services.
I would stop by the funeral home and
at least find the book or if the family was there, let them know.
But many of our patients also died very isolated back in that time,
because of the, the stigma around HIV.
And that was also very, very sad to me.
Because, you know, one of the things, you know, that you learn when you care for
patients who are dying is that, you know,
it, it can be, if, if we've reached the end of what we can do.
Providing care for people at the end of life can be a very positive experience.
There are good ways to die, and there are bad ways to die.
And dying in hospice care, comfortable with, is a very good to die.
But many of our patients couldn't even have the advantage of that,
because they were so isolated from family or from social connections and
they died alone, and it was just, it's was tragic and very sad.
>> I know one very prominent physician in another field who started off in
infectious diseases at that time.
>> Mm-hm.
>> And couldn't deal with it and left and took up another speciality.
>> Yeah.
>> He lost hundreds of patients.
>> Well, I will tell you now, I look back.
I just saw a patient, earlier, in the year.
I actually have two patients in my practice who've had
kidney transplants because of chronic renal disease.
>> huh. >> And
I have a patient who had a bone marrow transplant because of a,
leukemia, and to me, this is like a miracle.
>> Mm-hm. >> And that, you know,
to think back when I.
>> That they've lived long enough.
>> Well, not only that but someone would even consider doing a transplant on
someone with a disease that was ultimately fatal rapidly in everyone, it's,
It's miraculous in people having children, in people becoming grandparents and
it's really, really miraculous!
So the other thing, you know, as we try to talk to patients that going back to
medications, is again, it's not unique to HIV.
But it's very difficult to say you have this illness, we have no cure but
we can control complications we can find.
But you have to take every pill every day and, and
you just you know, can't miss doses.
And people will say do I have to take this for the rest of my life?
And I say or until something better comes along.
And you know, there's >> Mm.
>> Agent and clinical trials right now.
Phase 3 clinical trials of once monthly infusion.
>> So there, you know,
a once monthly infusion, a once yearly shot, eventually a cure.
But I tell patients, you want to be around to take advantage of it.
>> Live long enough for that.
>> So this is the best we have right now.
So you gotta stick with this.
>> That's right. >> And then you'll be here.
When better things come along and you'll be healthy and
you'll be able to take advantage of that.
>> One more question about the story that you
just told about people basically dying alone, being isolated.
Was that in many cases because of the stigma against homosexuality?
>> That- >> People not being able to go back to
their family.
>> Exact, yeah, that was part of it.
I mean, I, we can all tell stories, where we, you know,.
>> Mm. >> Sometimes patients had been estranged
from their family, either around issues related to substance abuse or
issues related to sexual orientation.
Sometimes, the family would sort of arrive on the scene,
literally, when the patient was at death's door.
And, you know, because at that time, because of the,
the risk factors having HIV was much more strongly associated with those
two risks either injection drug use or, or sexual orientation, being gay.
And it was just very, very sad it was very, very sad to see you know,
people reunited literally at the time of, of someones death, but yeah, that.
And also cultural stigmas I know I cared for
several individuals who were of Arabic ethnic origin, and that was a,.
>> Mm. >> Boy, real real difficult culture.
At least for the patients that I have.
In terms of disclosing about HIV, or
disclosing both of them were gay and, and both of them died in very you know,
very alone and very marginalized because of that so.
>> I'm going to conclude by saying that it's hard for me to imagine a higher
morale, more family type, large medical practice than than you run here.
It's just inspiring to be here.
Not only to talk to you but
to talk to the other people whom I've encountered during our visit.
Thanks for letting us come and thanks for talking to us.
>> Well, thanks for the interest you've shown in what we do [CROSSTALK].
>> Absolutely.
