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.
In part one of our interview with Dana
Kyun, you heard how a single factor infusion
in 1983
set Dana's life on a path shaped by
survival, stigma, and devastating loss, and how grief
eventually became fuel.
Today in part two, we follow what happened
next. How Dana's relentless advocacy helped force a
national reckoning over blood safety. How that pressure
contributed to real infrastructure and oversight, and why
Dana is stepping back into this fight now.
Because the guardrails built from tragedy can be
weakened faster than people realize. For Dana, blood
safety is a promise we either keep or
we break.
Well, after moving to Richmond, Virginia with the
children and helping them emotionally and and my
parents helping us emotionally and mentally go through
all this this transition
and learning how to live with all of
this. I ended up getting the job in
the hospital as a clinical counselor, and I
was counseling people with with HIV AIDS and
people with hemophilia
who had turned HIV positive.
Who who better than to identify and empathize
and counsel people with HIV
than someone who's been through it themselves. It
was all kept discreet,
and no one revealed that because, again, it
was at a time that most people were
being discriminated against.
Dana is naming something that defined that era.
You weren't just managing a diagnosis. You were
managing how the world might treat you if
they found out. In the late eighties and
early nineties, people living with HIV were still
being refused jobs, isolated in schools, and treated
like a threat instead of a human being.
And for families in the bleeding disorders community,
the stigma could attach to everyone, spouses, kids,
even caregivers.
So Dana did counseling work inside a quiet
reality. You help people survive while trying not
to become a target. And then a box
of documents changed everything. But the turning point
for me is when I went to work
there, doctor Lyman Fisher, who was a pathologist,
but he was the hematologist
too for the clinic there for hemophilia,
he had he was a pack rat. He
caved every document imaginable,
everyone. And so he said, I have this
box I'm gonna bring over to your office,
and I want you to learn everything you
can. He was my boss, and he said,
learn everything you can about this. And here
are all memos and things that came from
NHF
and came from CDC. He'd read them and
learn about them. It might help you with
the counseling of people with HIV.
And as I started to
spend time putting them in order and documenting
them and know, I was looking at a
sequence here, but there
was surveillance
study that was put out by the CDC
and NHF in 1982
and it where they were collecting
blood samples and they were testing for HTLV
three
which is the beginning or what they first
called HIV,
lab results,
lab markers, everything, and I saw that survey.
This was a survey conducted in 1982,
shortly before his accident and consequential transfusion,
leaving him with HIV, which led to the
death of his wife.
From this box, Dana expected education,
material that might help him support patients emotionally.
Instead,
he found the beginning of a timeline, a
pattern.
Signals that suggested concern existed earlier than many
families were ever told, and that what happened
to the bleeding disorders community wasn't just bad
luck. It was a system making decisions while
people paid the price. And I started to
get a fire inside me and thinking this
should never have happened.
What were people thinking?
What were people doing? Were they ignoring the
signs of what was going on? And that's
when I be I became angry at things.
I had to get myself calm. I think,
you know, not to lose it. So
believe it or not, I I just started
praying about things and I said, you know,
I've lost what I love to do, ministry.
And I and I I said, okay, God.
That didn't seem fair
in my life of all the things that
happened in my children's life. And now I'm
looking at this and it was basically some,
like, something came to me and said, well,
you got a new mission here. I had
a fire in my belly, you know. And
I had to figure out what what who
knew what went. And I need to get
down to the bottom of this. As Dana
got closer and closer to the sources of
the information, he understood the conflict of interest
concerning organizations like the National Hemophilia Foundation.
Dana was associated with the NHF through his
work helping HIV infected hemophilia patients.
Knowing that he couldn't necessarily call them out
yet and expect help from them, he began
looking outside to other activists who are on
their own paths getting to the bottom of
what had happened.
That's when he learned about a professor named
Michael Rosenberg in California.
Michael had a newsletter that he was putting
out about hemophilia and HIV
and was also questioning who knew what and
when and outright accusing the NHF of what
they did and didn't know. So Dana decided
to give him a call. He was a
little hesitant to talk to me because he
thought I was from the National Hemophilia Foundation.
I said, no. I work at a treatment
center. I am involved with NHF and helping
people and counseling people through HIV infections.
But I said, I'm seeing things that I
don't like to see here and I, I
need to ask, talk to someone about it
because I think someone did something wrong. And
so he and I became close friends and
we shared documents and he challenged me to
petition the government for Freedom of Information Act.
And I was asking CDC, VA, public health
system, HHS,
everybody
for documents as I learned about them.
That's when I came to a place where
I had them
sitting all out on my living room floor.
All of these documents. And this is the
moment where advocacy turned into an investigation.
Dana wasn't only grieving. He was building a
case.
But Dana was also battling severe hepatitis c,
another consequence many families in the bleeding disorders
community know too well. And in 1991, Dana
says it got so bad, he believed he
was dying. So picture a living room floor
covered in documents, a man fighting for his
life, and still choosing to keep going. And
in that confusion of illness, evidence, and anger,
a name emerged, the trail of AIDS.
I put them in chronological
order. And when I put them into chronological
order, the sequence of events, and I I
put them together and I was livid. I
said, you all knew what and when, but
you didn't do anything about it. You were
you were taking the advice of the blood
banks and taking the who produce the products
and the manufacturers
who were processing and selling the products,
and you all knew it was contaminated,
and you didn't do anything about it. The
only way they would pull them off the
shelves or recall them is that they could
trace it back to a person who had
AIDS. By that time, it's too late. It's
been distributed. This is a hard truth about
advocacy.
Sometimes you don't start with hope. Sometimes you
start with refusal to let silence win,
to let harm disappear into a footnote,
to let people who profited from delay walk
away clean. And Dana's next move proves something
important for all of us. Advocacy isn't one
thing. It's bedside courage. It's paperwork. It's phone
calls.
It's showing up anyway,
even when it costs you. Dana took the
trail of AIDS where it could do what
support groups in private grief never could, force
accountability.
I knew I had to
take them,
print them off, make the copies of this,
and give them to senator Bob Graham of
Florida, representative Porter Goss of Florida, and senator
Ted Kennedy of Massachusetts.
And I got to know them very well
by just making an appointment and taking these
to them and letting them know. And at
that time, I also met Louise Ray who
had their sons that all had HIV. So
she worked with me in
convincing everybody that they needed to look at
these documents and it was was surprising. I
left it I think around December and
in January, I got a call said, can
you please come in? We wanna talk to
you about it. They all were appalled at
what they saw. I said, our community has
been crying out for a congressional investigation.
And, I and, you know, they weren't gonna
get one. Senator Kennedy, senator Graham, and Porter
Goss sent over the trail of eight to
secretary
Donna Shalala. And she in turn commissioned the
in Institute of Medicine Academy of Sciences
to do a study. And this was in
1993.
And the study was took two years, and
it finished in 1995,
July
1995. Two years. After all of this fighting,
still more time will pass.
During which Dana was called up by the
investigation to help understand how he put this
all together. And I showed them through every
walked them through everything, and I said there
are more documents out there. And I spent
about three weeks doing that with them. That
was my motivate my motivation
was to make sense of not only my
infection,
but Patty's death because no one ever told
us how to prevent this. And no one
made a decision in the very beginning
to quarantine these products or get the news
out about these products because they were afraid
at that time, especially the National Hemophilia Foundation,
of associating
hemophilia and AIDS. They did not want to
associate it.
So all I can say is that I
was the catalyst
of getting these documents, which started the ball
rolling
for not only the Institute of Medicine report
coming out with 14 recommendations
for blood safety, but also the Ricky Ray
bill.
It's a moment like this when your splash
creates a ripple.
What Dana helped trigger wasn't only a report,
it was a shift in what the country
was willing to admit. There was a moment
to blame, vindication after years of work, but
there would be more. Dana's efforts would help
lead in part to the Ricky Ray Hemophilia
Relief Fund Act, federal legislation that created compassionate
payments for eligible people with hemophilia who contracted
HIV from certain blood products.
It wasn't justice, but it was acknowledgment. Yes.
So I just just realized that if it
hadn't been for this trail of AIDS in
the hemophilia community,
we probably
would not have had,
the Institute of Medicine Academy of Science report
and and I know we we wouldn't have
gotten the Ricky Ray bill because they needed
the proof that there was a reason
for the government to compensate.
And beyond compensation for families affected,
federal guidelines in the establishment for the very
first time of the Blood Safety Council. Number
one, to assign someone who would oversee
the nation's blood supply from the Department of
Health and Human Services.
And the second was to establish a Blood
Safety Council,
which then became the advisory committee of blood
safety and availability.
And then there were other other
categories of involving the CDC
with
their division of blood disorders and to working
collaboratively
with them. And, there was
also who the committee would be made up
of. People who were concerned with society, there
would be some lawyers on it, there'd be
some doctors on it, there'd be some agencies
on it, and then,
you know, social workers
and counselors and then it was consumers. There'd
be a consumer on it. And Donna Shalala,
through one of the people in HHS,
decided that they would invite me to be
the first consumer
to serve on the advisory committee of blood
safety and availability, and that was 1996.
The work Dana and so many others worked
tirelessly to organize and uncover
was only the beginning because that inspiration
lit a fire under an entire community. You
know, even though I may have been a
catalyst, then this community joined in with us.
And and, you know, and people started to
get together. It was everybody.
The committee of ten thousand, Hemophilia Federation of
America, and the National Hemophilia Foundation all working
together
to to
to make things happen. This is key to
what Dana really did. He helped a community
find a voice that refuses to stay hidden.
Because when people stop feeling alone, they start
becoming organized. And when they organize, systems change,
which brings us to why Dana is speaking
with urgency now. It wasn't until this past
year where I learned that in July,
a message
went out through the advisory committee
of blood tissue
safety and availability.
The government dismantled it, and HHS didn't keep
that committee anymore. And I found out about
that, and shortly thereafter, I also learned that
the government did a reduction in force in
CDC personnel at this division of blood disorders.
And so those two are so important
to the national safety of our blood supply.
And you don't get rid of something that
was overseeing the safety of your blood supply
who called to accountability
many of the blood product collection
companies, the manufacturers,
and kept them testing what they needed to
do, which they didn't do earlier, and screening,
and all these all these policies and procedures
that they did, who is overseeing them? And
when I asked that question
of
of some people in the government, they said,
well and especially some of these industry people
who are collecting blood, they said, well, we're
we're gonna make sure it's done correctly. Well,
that's like someone policing themselves to not speed.
There's self interest there, you know, and sometimes
who's gonna keep the check and balances? And
that's when I decided we needed to get
this community
back into advocacy
and question why and support
the reinstatement and refunding
of the advisory committee of blood safety and
the CDC division, blood disorders. If oversight disappears,
accountability weakens. And if accountability weakens, safety depends
on self policing, which history has already proven
isn't enough.
So Dana did what he's always done. He
called the community back to work. Dana reached
out to organizations doing the daily grinding essential
work of advocacy,
including the Coalition for Hemophilia b, because protecting
families requires a community voice where decisions are
being made. You don't wanna see the government
take two steps forward and three steps backwards,
and that's what they're doing, cherishing
the safety of the nation's blood supply. And
I look at it this way and and
I have to say this, not only are
other people in the future gonna be put
in danger, but you just walked over all
the graves of the people who died
that I know,
including, you know, the motivation of my wife
dying to be safe. And these people who
came up to DC to do this because
it was so important. And they knew it
was important because they lost loved ones because
of this. And the government paid close to
$1,000,000,000
in compensatory
money to the community.
I mean, what didn't you learn a lesson?
You know, it's like my grandmother used to
say put your hand on the stove and
get burned once Put your hand on the
stove a second time, you removed all doubt
that you're a fool. They they they have
lost perspective on what is important to the
American people and the safety of the American
people. And even after all the loss, after
decades of fighting,
Dana tells us what gives him hope. Not
a policy,
not a committee,
but the people. And I was so excited
to hear that coalition b was wanting to
get involved with this. And what gives me
hope is seeing a younger generation
getting excited about going and visiting their legislator
for this cause. And I watched a number
of of younger people do that, getting excited
about realizing that the issues of blood safety.
I went with some on a a hill
day, and
I watched them tell their stories. And I
watched them get excited about telling their stories
and excited about
what their asks were in front of legislators
or legislative staff. And I'm thinking,
my gosh. It's happening again. I can't wait
to see more advocates
come come about. And I'm glad that the
organizations are doing this. And anything I can
help these organizations, I'm doing. When I go
in, I say I'm representing
all of these organizations. I've been part of
them all in one way or the other
throughout the years, and we're still a community.
And so it's just not me, just not
me representing one, but there's a lot of
organizations
that are that are all involved in this.
Don't give up hope.
And I think you if you have a
cause and you know the right thing to
do and you know the truth and you
know what your community needs, pursue it, do
it, and do it with hope that it's
gonna happen.
Dana's story began with an injury on a
basketball court and became a lifelong confrontation with
what happens when systems move too slowly.
He turned grief into a mission. He turned
documents into leverage. He turned stigma into a
public truth. And now he's asking something simple
of all of us.
Don't forget what this cost. Don't assume safety
is permanent, and don't outsource advocacy to someone
else because the ripples only last if we
keep making them. Thanks for listening 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.
Thank you for listening to Boundless Bee, the
hemophilia bee podcast. The podcast standing with you
from a family like yours presented by the
Coalition for Hemophilia B and in partnership with
Balancing Life's Issues. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemob.org,
and don't forget to stay connected to your
community at hemo b dot org. Anything else
to add, Miles?