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Welcome to Boundless Bee, the Hemophilia Bee Podcast,

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the podcast standing with you from a family

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like yours, presented by the Coalition for Hemophilia

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Bee and in partnership with Balancing Life's Issues.

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Today is a very special two part episode

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with Danny Kyun, and this is a story

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about love, loss, determination, and resilience.

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Danny Kyun founded Patient Services Incorporated,

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PSI, in 1988

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and retired in 2018.

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Long before key health care legislation existed, Dana

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helped create a model that protected families living

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with rare and chronic illness from financial devastation,

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providing premium and co pay assistance when life

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saving medications were out of reach.

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But Dana's impact reaches even farther. His advocacy

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helped shape national conversations about blood safety, and

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today, he's coming out of retirement to fight

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once again as federal support for blood safety

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infrastructure

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faces serious strain. To understand why Dana is

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stepping back into the arena, we have to

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go back to the early nineteen eighties, a

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time when fear moved faster than facts and

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families affected by hemophilia

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often carried not just medical risk, but stigma.

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1980, I had a wife. I had a

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newly born son, and life was good. And

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I started commuting to seminary to Memphis and

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coming back and working the weekends at the

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church in Beechboth, Tennessee. In the earliest years

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of the AIDS epidemic, many people still don't

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understand how HIV was transmitted.

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That confusion fueled discrimination

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in workplaces, schools, neighborhoods, and even hospitals.

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For some families, the hardest part wasn't only

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the illness. It was how quickly the world

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could turn cautious, distant, or cruel. And for

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Dana, the turning point began with something that

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felt almost ordinary. 1983,

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the country churches got together, and they decided

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that they do a fundraiser basketball game. And

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so, definitely, I was the preacher, and I

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had to begin the basketball game. I had

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gone up to get a rebound and I

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came down on someone's foot and I heard

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a snap.

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And so I thought something's not good as

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I limped back to the bench. For families

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living with hemophilia b, this moment is familiar

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in a way you never forget.

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Sometimes it's a procedure at birth, sometimes it's

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a fall, a bump, a game of basketball,

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but the pattern is the same. One moment

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you're living your life, and the next, everything

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has changed. Dana knew he had mild hemophilia.

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He learned that when he was 17,

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but he had never needed treatment with factor

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before. I was going to the hospital

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to get an infusion, and I never had

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one before.

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Wasn't very familiar with

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the whole process of of getting an infusion

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and factor replacement.

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However, while I was going to seminary,

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I did go to the Memphis Hemophilia Treatment

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Center and just to make sure that if

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I did have an occasion like this, I

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would have a backup doctor even though they

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might be two hours

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away. So, nevertheless, I went to the emergency

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room. I had learned

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that people with hemophilia

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get infusions

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and so I thought someone said factor eight,

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but then I heard that there could possibly

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be something wrong with the blood supply that

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made factor.

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Dana's words there, I heard there could possibly

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be something wrong with the blood supply, are

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chilling

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because they reveal something the public didn't know.

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There was concern, even early on, that something

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dangerous might be moving through blood and blood

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products at that time in the early eighties,

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and safety systems didn't move as fast as

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families needed them to. And here's the part

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that matters for understanding the risk. At that

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time, many clotting factor concentrates were produced from

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large pools of donated plasma,

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sometimes thousands of donors in a single manufacturing

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pool, which meant one contaminated donation could affect

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many recipients.

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Dane didn't have a full road map yet,

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but he had the gut feeling that many

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families learned to trust. Something about this didn't

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feel safe. I'd gone to the hospital and

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got my treatment, and it seemed to work.

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And they said come back the next morning

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and get another treatment, which I did. After

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that, they said go home and put me

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in a cast and said, you we'll see

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you in six weeks. Well, I got home

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and about three to four days later, I

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became very sick and jaundice.

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So more than likely, I figured that might

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be something that came from

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the blood supply. So they put me in

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the hospital because I was very sick and

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just gave me fluids as the that was

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the only treatment

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if I did have hepatitis c,

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which after testing,

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they did say there wasn't a whole lot

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they can do, but as I was in

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the hospital, I was getting rashes and other

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symptoms, nausea, and but after a day or

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two, they sent me home, but I was

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still not doing well. They said, Oh, it

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takes time to get over. And so that's

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when I went home and

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literally almost died. But I guess through my

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wife's taking care of me and she said

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for a mom to help take care of

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us because at that time, my daughter had

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come along. She was born during that time.

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This is a meaningful point for families living

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with hemophilia b. A diagnosis doesn't diminish a

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life, but it can shape how a family

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plans, communicates, and supports one another.

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Today, care looks very different than it did

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decades ago. Many people with hemophilia b are

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building full, thriving lives, dating, getting married, having

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kids, traveling, working, and chasing what matters to

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them. And in that kind of life, partners

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often become teammates, learning the plan, knowing the

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tools, and staying connected,

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not from fear, but from confidence and care.

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Somehow, someway, I guess, by God's grace, it

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took me about six months to get over

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it. That put me into what I thought

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was going to be a safe zone and

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and continued on with life. Continued to be

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ordained as a Presbyterian minister after I graduated

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from seminary and and then started to look

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for a church that I could become an

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associate minister in. And that's where the next

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part of my life story comes in. By

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the mid nineteen eighties, HIV testing became available,

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and Dana made the choice to get tested.

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Even though he'd only had that one factor

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exposure over his hospital visits from the broken

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ankle injury, he wanted certainty.

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He wanted to protect his family. Dana's test

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came back positive,

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then positive a second time. At that point,

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I was told, and that was eighty

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six eighty seven, that it was sexually

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transmitted.

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So they had cautioned me to use protection

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for intimacy

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from then on in. And I always make

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a joke of it. Yes. I I practiced

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it religiously,

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you know, being a minister. We have to

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have some humor someplace here. But what would

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transpire would become one of the most devastating

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truths in the

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story. For years, he and his wife had

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lived in that early era of incomplete information

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when transmission routes were still being understood, when

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guidance was inconsistent

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even from the National Hemophilia Foundation,

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and when families were left piecing together risk

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in real time. Even though he now had

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the knowledge of being positive, there were still

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many years prior where he and his wife

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did not know. So from 1983

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to 1986,

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there was all this time that I did

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not know it was sexually transmitted. My wife

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ended up getting some bronchial infections and yeast

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infections, and we didn't know what was going

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on. We decided that she should go see

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a doctor, and she did. And when she

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went to see the doctor, they gave her

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some medications,

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but it got worse.

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And it got terrifically worse in which she

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had a hard time breathing, so she went

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to the hospital. When she was there, was

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doing all kinds of tests and trying to

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figure out what was wrong with her. I

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started to read in different publications

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that came that you could get something called

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a pneumocystis

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pneumonia

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if you had HIV.

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So I was in the hospital with them.

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When they threw their hands up, didn't know

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what it was. It was just a rare

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form of pneumonia that she had. I had

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said to them, could it be something like

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pneumocystis

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pneumonia?

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And the doctors all looked at me and

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said, why would you say that? And I

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said, because I I have HIV.

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Living through the earliest days of COVID when

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no one knew what was safe, when every

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surface felt suspicious,

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when people flinched at a cough, you could

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almost feel what Dana is describing next. Because

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in the nineteen eighties, fear didn't live just

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in the news. It walked into exam rooms.

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It shaped decisions. It changed how patients were

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touched, spoken to, or avoided. And when Dana

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told the doctors, I have HIV, the air

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changed. I mean, I'm not kidding. Their eyes

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widened.

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They

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grabbed each other and went out of the

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room. They were trying to figure out what

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they're gonna do.

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You know, and meanwhile, I had to go

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back and check with the kids. But when

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I came back to the hospital,

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they had a

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a biohazard

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sign on her door. And,

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no one and I was watching nurses come

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in that had headgear on and

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eye goggles on and masks on

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and the the coverings on their shoes, latex

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gloves,

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everything. Every part of their body covered imaginable.

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And they would

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be taking her temperature, taking her blood pressure,

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and also bringing her food, and they would

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put it at the door and make her

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get out and get the food herself. And

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then they really wouldn't take care of her.

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I was just just livid. And finally, I

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had to put my foot down. This is

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advocacy when you're terrified,

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advocacy when you're exhausted,

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advocacy when the people who are supposed to

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help pull away.

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And it's a kind of courage that caregivers

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know intimately

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when you stop caring about being polite because

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the stakes are too high.

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Dana demanded transfer, not because he wanted special

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treatment, but because he knew his wife needed

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competent care in a place prepared to treat

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HIV,

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and he refused to let her die where

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fear had become the loudest voice in the

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room. They said she had AIDS then at

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that point, and I said, well, you need

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to do something. Well, we can't. I said,

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no. You can't. You can take her from

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Jackson, and you can get her to Nashville,

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Vanderbilt Hospital where I know they had an

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HIV clinic. And I said, take her there,

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and they they wouldn't. I said, well, I'm

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gonna I'm demanding you do this. If you

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do not do this, then I am going

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to go and get a lawyer

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and I'm going to sue this hospital. And

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I said, the least you can do is

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don't let her die here. Let her get

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some help. Get an ambulance, take her to

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Vanderbilt,

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and I want you to do it within

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an hour. And they did. But they brought

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the ambulance to the back and then they

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took her through all these little passages to

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get her in there into the ambulance and

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take her. So they got her there and

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I soon followed after I made sure that

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someone was taking care of the children. And

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when I got there, you know, I was

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just so amazed

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with the doctor there that was taking care

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of her. And they did a very good

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job, and they had her in a intensive

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care trying to get her better. She was

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doing pretty well, and we were making plans

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for her to come home. And and the

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doctor said we will petition the FDA to

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the use of the AZT

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because it's the only drug at that time.

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So we had a great day. I took

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the kids back. They were in preschool and,

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you know, in kindergarten so I was, you

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know, making sure that was all taken care

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of. And then I came back to the

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hospital

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the next time and I could not find

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her in the room.

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And I was kind of frantic wondering where

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she was and I was looking for the

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doctor and then I found out that they

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had taken her to intensive care. So I

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said, you call the doctor and have her

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meet me at the intensive care unit. She

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told me what was going on. She's having

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a hard time breathing and we're just here

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helping her do that. Two days later, she

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had progressively gotten worse and they said we

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had to put her on a ventilator.

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And so now she was groggy

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and, it was hard to communicate with her.

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It got to a point where all I

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could do is communicate her with her in

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squeezing of hands. Yes for one squeeze and

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no for two squeezes, and that's all we

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could do. And I knew that it was

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coming to an end.

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And we did what we needed to do,

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talked about our faith, and finally I told

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her that,

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I would do the best I could to

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take care of the children and

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for her not to worry,

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and I would never let them forget her.

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There are moments in a life that split

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time in two. And if you've ever sat

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in the hospital watching someone you love fade

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in and out of strength, you know what

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this does to you.

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You learn how to carry hope in one

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hand and dread in the other. And then

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when the moment comes, grief doesn't arrive neatly.

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The kind Dana's describing is the kind that

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comes in waves, the kind that shows up

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in grocery aisles, in car rides, in quiet

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mornings, the kind that doesn't ask permission.

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And after his wife died, Dana wasn't only

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grieving as a husband. He was also parenting

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two preschool children through a loss they couldn't

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possibly understand.

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The kind of why that no adult can

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answer in a way that makes it okay.

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He was also still pastoring, still showing up,

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while carrying the secret of HIV that would

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have changed how people looked at him and

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his children overnight. I mean, you think about

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this, it's like, oh my gosh. It's it's

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thirty seven years or more, and it still

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hurts. You know, they say people say, you

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know, you know, over time, it everything gets

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better. No. It never the hurt never goes

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away. You just learn how to live with

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it. You learn how to not forget the

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wonderful memories.

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So how do you begin to move forward

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when it feels like everything is gone?

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Dana had lived the consequences of a system

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that moved too slowly.

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He had watched what happens when life saving

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treatment is out of reach. At this time

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in the late nineteen eighties, HIV medication was

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limited and expensive,

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and access often depended on whether your insurance

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would cover it, whether you can manage co

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pays. For Dana, the answer became clear, help

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someone else live.

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That's when Patient Services Incorporated was born, and

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that work, in time, would place Dana in

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hospital settings alongside other patients living with hemophilia

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and HIV.

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And it would eventually lead toward the deeper

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advocacy efforts that culminated in the trail of

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AIDS that would ultimately establish the country's first

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blood safety programs after years of fighting for

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transparency.

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And that's where we'll pick up next time

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in part two of Dana's story.

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Thank you for listening to Boundless Bee, the

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Hemophilia Bee Podcast, the podcast standing with with

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00:14:52,580 --> 00:14:54,860
you from a family like yours, presented by

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00:14:54,860 --> 00:14:57,679
the Coalition for Hemophilia b and in partnership

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with Balancing Life's Issues.

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Thank you for listening to Boundless b, the

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00:15:08,595 --> 00:15:11,475
Hemophilia Bee podcast. The podcast standing with you

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00:15:11,475 --> 00:15:13,794
from a family like yours, presented by the

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Coalition for Hemophilia Bee and in partnership with

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Balancing Life's Issues. Produced by me, Kai. Got

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an idea for the show? Send us an

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email at podcast@hemobee.org,

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and and don't forget to stay connected to

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your community at hemo b dot org. Anything

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00:15:27,949 --> 00:15:28,929
else to add, Miles?