When Patrick James Lynch launched BloodStream in 2016, he sought to create something that didn’t yet exist: a podcast featuring voices of people from the bleeding disorders community and discussing the latest news and updates that affected them.
Meaningful conversations have been a thread running through BloodStream’s work ever since. “There’s something about the human voice and the connection through a podcast that encourages people to want to share it with others,” says Lynch, who has severe hemophilia A and dedicates his work to the memory of his brother, Adam, who died from a brain bleed at age 18.
Here, Lynch and Amy Board, who joined as co-host in 2020 after seven years as executive director of the National Bleeding Disorders Foundation Colorado Chapter, talk about where they get their ideas, what their favorite moments are from the show, and how they are connecting with the bleeding disorders community.
What do you consider to be success for BloodStream?
Lynch: I think success for us is responding to the things that are of highest interest to the community in a timely and comprehensive way and bringing the right expert voices on.
Board: Patrick and I really want the show to be conversational. We want to bring in people whose opinions matter on the topics of the moment and have those conversations. It is the place where we can talk freely about things that maybe others in our local communities and in our homes might not understand.
Where do you get your ideas for the show?
Lynch: It’s a mix of things. Twitter (X), Google Alerts, and NBDF news briefs are part of it. Listener suggestions are part of it. And we’re collecting input while we’re at chapter events, conferences, symposiums, and summits. Then we have weekly meetings to go through the content calendar. We drop things in as they come up and shift things around as priorities change or news breaks.
Board: We record the week that it’s released, so typically what we discuss on the show is very timely. And we’ve developed relationships now with multiple national organizations, and they know it’s a platform for them to come on and share with the community about what they’re doing.
What are some of your top highlights from the show?
Lynch: I remember when we had a community member on the show — the first one that I had heard about who was quarantined because she had COVID — and being able to speak to her directly: What does this mean? What are we learning from the community? Bringing on scientific experts in bleeding disorders to help break through the noise around what is true and what is myth. That was an interesting, unexpected responsibility.
When the first bispecific monoclonal antibody was announced, Hemlibra, we were able to go through: What is this? What does this mean? Who’s eligible? It was similar with the introduction of hemophilia A and hemophilia B gene therapies.
More importantly, the feedback that we get from people who say, “Thank you for making this conversation happen. Thank you for bringing this information to me. I wasn’t aware of X, Y, or Z.”
The last one that comes to mind is when former National Hemophilia Foundation CEO Val Bias passed away in 2021. We were fortunate to have a tremendous amount of content from Val from prior podcast experiences. So I went through the audio that we had not used before and put together an episode that honored his life and legacy, and that got a great response.
Board: We have some regular segments that listeners say have meant something. One was on mental health, called “Let’s Talk.” In the monthly segment, we discussed on a very nonclinical level what it means to have some of these feelings.
That transitioned to a new segment called “I’m Fine,” which is really thinking about behavioral health. When we’re managing a chronic illness, sometimes we feel like, “I’m fine. I don’t want to deal with it.” How do you get out of that stuck, “I’m fine” mindset?
Amy, you recently had a chance to interview the new National Bleeding Disorders Foundation president and CEO, Phil Gattone. What were your impressions of him and his direction for NBDF?
Board: We clicked right away. I was really taken by Phil’s dedication to local chapter organizations and his awareness that they are the lifeblood of our communities, adding attention back to those communities, listening to them. He related with some of those chapter leaders when he met them for the first time, and they were really impressed. I am excited for his tenure at NBDF.
What feedback have you gotten from the bleeding disorders community?
Lynch: Some of the most significant feedback that I’ve gotten from the community is around feeling seen, feeling heard, feeling as though the questions that were on people’s minds are being asked — hearing nuance and hearing points of view that feel very human and real and don’t feel canned or too safe.
I think that, more than anything, it’s the humanization of what it means to live with a bleeding disorder. We’ve brought up something, and someone’s mentioned, “I shared this with my son” or “I sent this to my dad” or “My sister just had a kid, and I sent this to her.” It’s become something that people share with loved ones that they know are affected by a bleeding disorder as a way to connect and help them get more information.
Board: I’ve had several moms come up to me and say they’re listeners of the show, and they say that it helped them in that isolated moment of darkness, when they’re not exactly sure what life is going to look like. Their child has just been diagnosed. And just to hear the normal banter of what it means to have hemophilia is calming, really. There’s no sense of impending dread. There’s just, “It’s going to be OK.” It’s an entry point into the community of what people talk about, the touch points they should be aware of, the organizations they should be aware of.