Welcome to Boundless Bee, the Hemophilia Bee Podcast,
the podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee and in partnership with Balancing Life's Issues.
Today is a very special two part episode
with Danny Kyun, and this is a story
about love, loss, determination, and resilience.
Danny Kyun founded Patient Services Incorporated,
PSI, in 1988
and retired in 2018.
Long before key health care legislation existed, Dana
helped create a model that protected families living
with rare and chronic illness from financial devastation,
providing premium and co pay assistance when life
saving medications were out of reach.
But Dana's impact reaches even farther. His advocacy
helped shape national conversations about blood safety, and
today, he's coming out of retirement to fight
once again as federal support for blood safety
infrastructure
faces serious strain. To understand why Dana is
stepping back into the arena, we have to
go back to the early nineteen eighties, a
time when fear moved faster than facts and
families affected by hemophilia
often carried not just medical risk, but stigma.
1980, I had a wife. I had a
newly born son, and life was good. And
I started commuting to seminary to Memphis and
coming back and working the weekends at the
church in Beechboth, Tennessee. In the earliest years
of the AIDS epidemic, many people still don't
understand how HIV was transmitted.
That confusion fueled discrimination
in workplaces, schools, neighborhoods, and even hospitals.
For some families, the hardest part wasn't only
the illness. It was how quickly the world
could turn cautious, distant, or cruel. And for
Dana, the turning point began with something that
felt almost ordinary. 1983,
the country churches got together, and they decided
that they do a fundraiser basketball game. And
so, definitely, I was the preacher, and I
had to begin the basketball game. I had
gone up to get a rebound and I
came down on someone's foot and I heard
a snap.
And so I thought something's not good as
I limped back to the bench. For families
living with hemophilia b, this moment is familiar
in a way you never forget.
Sometimes it's a procedure at birth, sometimes it's
a fall, a bump, a game of basketball,
but the pattern is the same. One moment
you're living your life, and the next, everything
has changed. Dana knew he had mild hemophilia.
He learned that when he was 17,
but he had never needed treatment with factor
before. I was going to the hospital
to get an infusion, and I never had
one before.
Wasn't very familiar with
the whole process of of getting an infusion
and factor replacement.
However, while I was going to seminary,
I did go to the Memphis Hemophilia Treatment
Center and just to make sure that if
I did have an occasion like this, I
would have a backup doctor even though they
might be two hours
away. So, nevertheless, I went to the emergency
room. I had learned
that people with hemophilia
get infusions
and so I thought someone said factor eight,
but then I heard that there could possibly
be something wrong with the blood supply that
made factor.
Dana's words there, I heard there could possibly
be something wrong with the blood supply, are
chilling
because they reveal something the public didn't know.
There was concern, even early on, that something
dangerous might be moving through blood and blood
products at that time in the early eighties,
and safety systems didn't move as fast as
families needed them to. And here's the part
that matters for understanding the risk. At that
time, many clotting factor concentrates were produced from
large pools of donated plasma,
sometimes thousands of donors in a single manufacturing
pool, which meant one contaminated donation could affect
many recipients.
Dane didn't have a full road map yet,
but he had the gut feeling that many
families learned to trust. Something about this didn't
feel safe. I'd gone to the hospital and
got my treatment, and it seemed to work.
And they said come back the next morning
and get another treatment, which I did. After
that, they said go home and put me
in a cast and said, you we'll see
you in six weeks. Well, I got home
and about three to four days later, I
became very sick and jaundice.
So more than likely, I figured that might
be something that came from
the blood supply. So they put me in
the hospital because I was very sick and
just gave me fluids as the that was
the only treatment
if I did have hepatitis c,
which after testing,
they did say there wasn't a whole lot
they can do, but as I was in
the hospital, I was getting rashes and other
symptoms, nausea, and but after a day or
two, they sent me home, but I was
still not doing well. They said, Oh, it
takes time to get over. And so that's
when I went home and
literally almost died. But I guess through my
wife's taking care of me and she said
for a mom to help take care of
us because at that time, my daughter had
come along. She was born during that time.
This is a meaningful point for families living
with hemophilia b. A diagnosis doesn't diminish a
life, but it can shape how a family
plans, communicates, and supports one another.
Today, care looks very different than it did
decades ago. Many people with hemophilia b are
building full, thriving lives, dating, getting married, having
kids, traveling, working, and chasing what matters to
them. And in that kind of life, partners
often become teammates, learning the plan, knowing the
tools, and staying connected,
not from fear, but from confidence and care.
Somehow, someway, I guess, by God's grace, it
took me about six months to get over
it. That put me into what I thought
was going to be a safe zone and
and continued on with life. Continued to be
ordained as a Presbyterian minister after I graduated
from seminary and and then started to look
for a church that I could become an
associate minister in. And that's where the next
part of my life story comes in. By
the mid nineteen eighties, HIV testing became available,
and Dana made the choice to get tested.
Even though he'd only had that one factor
exposure over his hospital visits from the broken
ankle injury, he wanted certainty.
He wanted to protect his family. Dana's test
came back positive,
then positive a second time. At that point,
I was told, and that was eighty
six eighty seven, that it was sexually
transmitted.
So they had cautioned me to use protection
for intimacy
from then on in. And I always make
a joke of it. Yes. I I practiced
it religiously,
you know, being a minister. We have to
have some humor someplace here. But what would
transpire would become one of the most devastating
truths in the
story. For years, he and his wife had
lived in that early era of incomplete information
when transmission routes were still being understood, when
guidance was inconsistent
even from the National Hemophilia Foundation,
and when families were left piecing together risk
in real time. Even though he now had
the knowledge of being positive, there were still
many years prior where he and his wife
did not know. So from 1983
to 1986,
there was all this time that I did
not know it was sexually transmitted. My wife
ended up getting some bronchial infections and yeast
infections, and we didn't know what was going
on. We decided that she should go see
a doctor, and she did. And when she
went to see the doctor, they gave her
some medications,
but it got worse.
And it got terrifically worse in which she
had a hard time breathing, so she went
to the hospital. When she was there, was
doing all kinds of tests and trying to
figure out what was wrong with her. I
started to read in different publications
that came that you could get something called
a pneumocystis
pneumonia
if you had HIV.
So I was in the hospital with them.
When they threw their hands up, didn't know
what it was. It was just a rare
form of pneumonia that she had. I had
said to them, could it be something like
pneumocystis
pneumonia?
And the doctors all looked at me and
said, why would you say that? And I
said, because I I have HIV.
Living through the earliest days of COVID when
no one knew what was safe, when every
surface felt suspicious,
when people flinched at a cough, you could
almost feel what Dana is describing next. Because
in the nineteen eighties, fear didn't live just
in the news. It walked into exam rooms.
It shaped decisions. It changed how patients were
touched, spoken to, or avoided. And when Dana
told the doctors, I have HIV, the air
changed. I mean, I'm not kidding. Their eyes
widened.
They
grabbed each other and went out of the
room. They were trying to figure out what
they're gonna do.
You know, and meanwhile, I had to go
back and check with the kids. But when
I came back to the hospital,
they had a
a biohazard
sign on her door. And,
no one and I was watching nurses come
in that had headgear on and
eye goggles on and masks on
and the the coverings on their shoes, latex
gloves,
everything. Every part of their body covered imaginable.
And they would
be taking her temperature, taking her blood pressure,
and also bringing her food, and they would
put it at the door and make her
get out and get the food herself. And
then they really wouldn't take care of her.
I was just just livid. And finally, I
had to put my foot down. This is
advocacy when you're terrified,
advocacy when you're exhausted,
advocacy when the people who are supposed to
help pull away.
And it's a kind of courage that caregivers
know intimately
when you stop caring about being polite because
the stakes are too high.
Dana demanded transfer, not because he wanted special
treatment, but because he knew his wife needed
competent care in a place prepared to treat
HIV,
and he refused to let her die where
fear had become the loudest voice in the
room. They said she had AIDS then at
that point, and I said, well, you need
to do something. Well, we can't. I said,
no. You can't. You can take her from
Jackson, and you can get her to Nashville,
Vanderbilt Hospital where I know they had an
HIV clinic. And I said, take her there,
and they they wouldn't. I said, well, I'm
gonna I'm demanding you do this. If you
do not do this, then I am going
to go and get a lawyer
and I'm going to sue this hospital. And
I said, the least you can do is
don't let her die here. Let her get
some help. Get an ambulance, take her to
Vanderbilt,
and I want you to do it within
an hour. And they did. But they brought
the ambulance to the back and then they
took her through all these little passages to
get her in there into the ambulance and
take her. So they got her there and
I soon followed after I made sure that
someone was taking care of the children. And
when I got there, you know, I was
just so amazed
with the doctor there that was taking care
of her. And they did a very good
job, and they had her in a intensive
care trying to get her better. She was
doing pretty well, and we were making plans
for her to come home. And and the
doctor said we will petition the FDA to
the use of the AZT
because it's the only drug at that time.
So we had a great day. I took
the kids back. They were in preschool and,
you know, in kindergarten so I was, you
know, making sure that was all taken care
of. And then I came back to the
hospital
the next time and I could not find
her in the room.
And I was kind of frantic wondering where
she was and I was looking for the
doctor and then I found out that they
had taken her to intensive care. So I
said, you call the doctor and have her
meet me at the intensive care unit. She
told me what was going on. She's having
a hard time breathing and we're just here
helping her do that. Two days later, she
had progressively gotten worse and they said we
had to put her on a ventilator.
And so now she was groggy
and, it was hard to communicate with her.
It got to a point where all I
could do is communicate her with her in
squeezing of hands. Yes for one squeeze and
no for two squeezes, and that's all we
could do. And I knew that it was
coming to an end.
And we did what we needed to do,
talked about our faith, and finally I told
her that,
I would do the best I could to
take care of the children and
for her not to worry,
and I would never let them forget her.
There are moments in a life that split
time in two. And if you've ever sat
in the hospital watching someone you love fade
in and out of strength, you know what
this does to you.
You learn how to carry hope in one
hand and dread in the other. And then
when the moment comes, grief doesn't arrive neatly.
The kind Dana's describing is the kind that
comes in waves, the kind that shows up
in grocery aisles, in car rides, in quiet
mornings, the kind that doesn't ask permission.
And after his wife died, Dana wasn't only
grieving as a husband. He was also parenting
two preschool children through a loss they couldn't
possibly understand.
The kind of why that no adult can
answer in a way that makes it okay.
He was also still pastoring, still showing up,
while carrying the secret of HIV that would
have changed how people looked at him and
his children overnight. I mean, you think about
this, it's like, oh my gosh. It's it's
thirty seven years or more, and it still
hurts. You know, they say people say, you
know, you know, over time, it everything gets
better. No. It never the hurt never goes
away. You just learn how to live with
it. You learn how to not forget the
wonderful memories.
So how do you begin to move forward
when it feels like everything is gone?
Dana had lived the consequences of a system
that moved too slowly.
He had watched what happens when life saving
treatment is out of reach. At this time
in the late nineteen eighties, HIV medication was
limited and expensive,
and access often depended on whether your insurance
would cover it, whether you can manage co
pays. For Dana, the answer became clear, help
someone else live.
That's when Patient Services Incorporated was born, and
that work, in time, would place Dana in
hospital settings alongside other patients living with hemophilia
and HIV.
And it would eventually lead toward the deeper
advocacy efforts that culminated in the trail of
AIDS that would ultimately establish the country's first
blood safety programs after years of fighting for
transparency.
And that's where we'll pick up next time
in part two of Dana's story.
Thank you for listening to Boundless Bee, the
Hemophilia Bee Podcast, the podcast standing with with
you from a family like yours, presented by
the Coalition for Hemophilia b and in partnership
with Balancing Life's Issues.
Thank you for listening to Boundless b, the
Hemophilia Bee podcast. The podcast standing with you
from a family like yours, presented by the
Coalition for Hemophilia Bee and in partnership with
Balancing Life's Issues. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemobee.org,
and and don't forget to stay connected to
your community at hemo b dot org. Anything
else to add, Miles?