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In 2021,

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a young man named Derek, who had severe

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hemophilia and a history of mental health and

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substance use, hit rock bottom. And he did

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what we hope everyone will do. He wanted

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to turn his life around, and so he

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went to his hemophilia treatment center nurse and

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asked for help. She called all the substance

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use disorder treatment facilities in the area, and

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none of them would take a person with

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a bleeding disorder.

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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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B and in partnership with Balancing Life's Issues.

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Today, we are joined by Kate Basinski, public

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health professional, fierce advocate, mother of a child

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with severe hemophilia a, and chair of the

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bleeding disorders, substance use, and mental health access

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coalition or BD SUMHAC for short. Today, we're

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going to look at how stigma, misunderstanding,

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and system gaps can cost lives and how

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this community is fighting back with advocacy, data,

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and heart. Welcome to the podcast, Kate.

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Thank you, Kai. I'm excited to be on

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the show. Well, it's wonderful to have you

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as always, and I'm really looking forward to

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you sharing your story on how you got

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to this place. And I guess let's just

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start there, your background in public health.

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Sure. So I have a background in health

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policy and politics.

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I worked for a member of Congress for

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about a decade doing his health policy on

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Capitol Hill. I got my master's of public

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health at Johns Hopkins

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and then did state, primarily state based healthcare

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consulting

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work

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until I had kids.

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And my son was born with severe hemophilia

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a. Tell us about that experience because I

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know that, you know, being in public health

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and then

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having a child who's going to need

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support. Can you talk us about the emotions

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of that moment? Well, I didn't know that

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I carried the gene for hemophilia.

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We had no family history, and so I

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was really shocked.

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Mhmm. I wasn't sure what it was gonna

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mean for my family, and it was a

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really scary and overwhelming moment. Did becoming a

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parent with someone with hemophilia

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change how you focus your advocacy? Because obviously

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you're already in public health, and now it's

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even more personal. So did it change kind

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of where you took your energies at that

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time?

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Absolutely.

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I had not

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been working in the bleeding disorders community prior

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to his diagnosis.

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I had actually been lobbied by the bleeding

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disorders community when I was working on Capitol

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Hill many years prior, but I

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became, when we I stepped into this role,

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when I became part of the community, I

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joined the board of the New England Hemophilia

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Association. They are our local

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chapter in New England and helped them with,

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with their strategic

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planning process. And I became I started doing

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some fundraising for the community as well and

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became somewhat of the default advocacy person on

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the board because of my background.

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Mhmm.

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So and it's, I mean, your background is

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incredible, right? And it kind of it's almost

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beautiful in a way that you have all

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this experience that you can lend directly

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to your family. Through your experience sitting on

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these boards, especially now, can you talk to

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us a little more about the experience required

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to help, right? Whether it's fundraising or sending

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letters or making calls,

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just tell us more about how listeners out

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there can approach these organizations

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less cautiously,

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given no matter what their background could be.

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I think the the best advocates

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are those who have a story to tell,

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who have an experience that

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they can use to change policy, to change

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hearts and minds, and they're willing to be

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vulnerable and to sharing.

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Yeah. And I think that

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you don't need to have any

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background

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or experience. It's really about your willingness

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to be authentic

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and to share

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what has happened to you. Yeah.

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Yeah. That that's so well said and I

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think so important because it is those stories.

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We we've interviewed a lot of public health

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officials and but we hear it straight from

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them. It is that story

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that, you know, somebody essentially

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barged into my office to tell me that

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that got the needle to move in the

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right direction. Also remembering that you're talking with

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people.

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I think that especially today, and when so

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much of the debate happens in social media,

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it feels really removed from the humanity of

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folks. Absolutely.

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But when you have an opportunity

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to sit down and talk with someone human

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to human

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and say, this is what's happened to me,

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these are the consequences

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of the, the policy

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that you have supported or that's

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been enacted,

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those human stories can move people and

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and make a difference.

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Yeah. Yeah.

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So speaking of human stories, why don't you

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tell us about the call that kinda changed

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everything for you as it concerns the the

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current work you do with BD Sumac?

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Absolutely. Mhmm.

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So in 2021,

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a young man named Derek, who

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had severe hemophilia and a history of mental

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health and substance use, hit rock bottom.

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And he did what we hope everyone will

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do, which is ask for help.

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He wanted to turn his life around, and

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so he went to his hemophilia treatment center

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nurse

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and asked for help.

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And she called all the substance use disorder

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treatment facilities in the area, and none of

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them would take a person with a bleeding

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disorder,

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especially one who needed infusion medication. And without

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access to the treatment that he needed, Derek

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overdosed and he died. And

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so his hemophilia treatment center nurse, Jen Feldman,

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was

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shocked

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and, and didn't know exactly what to do.

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So, she reached out to the New England

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Hemophilia Association,

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and I was sitting on the board at

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the time. And because I was the advocacy

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person, it kind of fell

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in my lap.

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And his story really affected me because,

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you know, being from a, a good Irish

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Catholic family, we have

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a lot of mental health and substance use

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issues in our family. Mhmm.

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And I wanna make sure that if my

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son

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ever needs treatment, that he would have the

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same opportunity

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that anyone else would. And so it was

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really the sense of

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wanting to ensure that our community

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has that same ability

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to access care

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and that same opportunity

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for hope and recovery

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that everyone else does that really drove me

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to, to this work. So given the problem

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you saw, tell us a little bit about

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what you've uncovered and, and how are you

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taking it in a direction that can help

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members of this community get mental health and

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substance use,

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help if, if needed?

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Absolutely. The first thing as a public health

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person, I wanted to look at the data.

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Of course.

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Someone has to.

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We wanted to understand whether

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Derek's story was just a tragic,

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but one off incident, or

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whether it was indicative of a broader pattern.

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So we conducted a survey of all the

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hemophilia treatment centers nationwide

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and found that eighty three percent of providers

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who had attempted to refer a person

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with a bleeding disorder to inpatient or residential

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mental health or substance use treatment

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received a denial.

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That's devastating.

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That's a devastating number. It was really

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I I was floored when I saw the

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data, and it was true

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in states across the country for both adults

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and for kids. So what what do you

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think was at the core of that

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denial of service that everyone else was getting?

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So

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we followed up with interviews with the sir

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with the providers, and we found that the

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number one reason was related to the infusion

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medication. The facilities were really concerned about the

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use of infusion meds.

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Because of past drug use or because they

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the clinician or the folks working there wouldn't

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know how to administer it? I think it's

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a little bit of all the above. There's

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fear related to the the use of infusion

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medications. They don't want needles in their facility.

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Right. They don't feel confident in giving the

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medication,

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or they're not sure their license will allow

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them to give this medication. They're not

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certain they want to have someone self infusing

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in their facility. So there's a lot of

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concern related to the infusions. But we also

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saw

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that folks who don't use infusion medication, but

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simply carry the diagnosis of bleeding disorder, were

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also denied access.

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So there is

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fear and stigma related to an unfamiliar medical

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condition

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that sounds

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scary, that is preventing us from getting the

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access we need. Just imagine if you were

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told you're too complicated

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to treat. Not getting access to the same

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healthcare that everyone else does just because of

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stigma or a lack of understandings. I think

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more to the point of what your organization

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does of informing,

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gathering data, and and getting people the help

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they need is just so important. I guess,

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tell us a little bit about why this

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should matter to the hemophilia B community. And

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then, you know, maybe from that, what's exciting,

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what's hopeful about the work that you've done

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over the years?

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Absolutely. But I think I just

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want to follow-up on, on one thing you

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said because I think it's so important. And

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that is

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that when people are told they're too complicated,

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especially

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people who are struggling with substance use,

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and, and they have found the courage within

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them to ask for help. Mhmm.

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And then they're told no. Right.

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I, I have one member of our coalition

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who

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struggle with substance use, and he talks about

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those windows of opportunity.

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And

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he went to seeking treatment on a number

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of occasions.

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And every time

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they said no,

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the window of opportunity for recovery closed and

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he went right back to using. Right. Because

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it's not a linear journey. It's not a

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linear journey. Yeah. And so it, it is

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really devastating

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when

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people are denied access

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and,

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and that might be the only chance they

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get. Yeah.

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Right. And I guess, you know, that you

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ended up answering the question in a way,

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like, why does this matter to the hemophilia

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community? Because there are so many of us

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out there who who are affected by substance

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abuse and mental health,

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you know, needs or disorders. Talk to us

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a little more about how,

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you know, BD Sumac works with the coalition

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and, you know, what what's giving you hope,

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right now with with the work you do?

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Absolutely. Our community really does need access to

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mental health and substance use treatment. As you

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know, people with chronic conditions,

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hemophilia

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b, and chronic conditions generally have higher rates

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of mental health

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issues. The data in our community shows that

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as well. There was one study, recent study

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of folks with von Willebrands

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that found that sixty three percent

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of folks with VWD

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reported

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significant symptoms of depression

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and fifty eight with significant, fifty eight percent

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with significant symptoms of anxiety.

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And when you have low VW

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factor, so you, you're, have a more severe

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condition,

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the rates of depression skyrocketed

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up to eighty six percent.

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So it's just such a needy

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community. And on the side with substance use,

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our community really needs access because although we

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don't have that same level of data looking

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at substance use in our community, we need

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a little more research there. We know that

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our community has struggled with pain, that some

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studies have shown that as many as two

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thirds of folks with

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severe hemophilia

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struggle with

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ongoing

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chronic pain, and many of them are prescribed

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opioids.

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Right. Amidst sore pain. Amidst the, you know,

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opioid epidemic,

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which is its own conversation.

327
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Yeah. And I guess for this and admittedly,

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you're not a clinician, but you know there's

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a need that is real, and we're not

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gonna give mental health or substance use advice

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by any means now, but just

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building those bridges between care teams and the

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professionals that will give you help. I'd say

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that's kind of where you live. So talk

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to us about that. And,

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I guess, how does somebody ask for help

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given everything you've discovered?

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Absolutely.

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The good news is

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that we know with the right advocacy and

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support, people can get access. So we've done

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a lot of work over the last three

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years in

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developing tools. We have changed some national regulations.

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We've gotten some new language into federal regs.

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We are are doing a lot to make

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it easier for people to advocate for themselves

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in conjunction with their their bleeding disorder treatment

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teams. We conducted a provider impact survey this

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summer or this spring rather that looked at

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how the impact of our coalition on access

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over the past three years. And what we

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found was in talking with those, the same

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HTC providers,

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that 86%

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of HTC providers are now able to get

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their folks access to treatment. That's not all

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the time. It's not to say that they

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don't get denials, but with the tools and

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scripts and advocacy

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that we have supported them in, they are

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able to get

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their

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people with bleeding disorders access to the treatment

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00:14:09,710 --> 00:14:12,910
they need. So we know that access is

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possible.

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00:14:13,790 --> 00:14:14,290
Mhmm.

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00:14:14,830 --> 00:14:17,310
That a denial is not the end of

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00:14:17,310 --> 00:14:17,970
the story.

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00:14:18,764 --> 00:14:21,024
It's the beginning of advocacy. Yeah.

371
00:14:21,325 --> 00:14:23,264
And does that start with your care team?

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00:14:23,565 --> 00:14:25,264
Like this Well the conversation?

373
00:14:25,804 --> 00:14:26,304
Absolutely.

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00:14:26,764 --> 00:14:28,065
We really recommend

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for everyone because there are these unique barriers

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to accessing the bleeding disorders community. It's really

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00:14:34,830 --> 00:14:37,230
important for everyone to talk with their bleeding

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00:14:37,230 --> 00:14:38,529
disorder treatment team

379
00:14:39,070 --> 00:14:40,129
early, often,

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00:14:40,509 --> 00:14:41,250
and honestly

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00:14:41,789 --> 00:14:43,250
Mhmm. About any

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mental health or substance use concerns they might

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00:14:45,870 --> 00:14:46,335
have.

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00:14:46,735 --> 00:14:48,415
I think can you go back to the

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honest

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00:14:49,615 --> 00:14:52,254
honesty piece? I think we all struggle being

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00:14:52,254 --> 00:14:54,415
honest at the doctor no matter what it

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00:14:54,415 --> 00:14:55,855
is we're talking about. So talk about the

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00:14:55,855 --> 00:14:56,835
importance of that.

390
00:14:57,535 --> 00:14:59,960
I think it's it's so important. I was

391
00:14:59,960 --> 00:15:01,899
I was talking with a community member

392
00:15:02,360 --> 00:15:02,860
who

393
00:15:03,480 --> 00:15:06,679
was was kinda joking about how, you know,

394
00:15:06,679 --> 00:15:09,639
he knows how to take the screening tests

395
00:15:09,639 --> 00:15:11,639
so that his provider team won't ever ask

396
00:15:11,639 --> 00:15:13,965
him any follow-up questions. Right. So he know,

397
00:15:13,965 --> 00:15:16,384
he knows how to pass it without actually

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00:15:16,524 --> 00:15:19,565
having to have a real conversation about mental

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00:15:19,565 --> 00:15:21,745
health or substance use. And sure,

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00:15:22,045 --> 00:15:23,585
you can do that. But

401
00:15:24,605 --> 00:15:27,559
the problem is if you let these issues

402
00:15:27,620 --> 00:15:29,399
go, the concerns linger.

403
00:15:29,779 --> 00:15:32,019
Right. You may not be able to get

404
00:15:32,019 --> 00:15:32,519
access

405
00:15:33,379 --> 00:15:36,259
in the crisis Right. When when you really

406
00:15:36,259 --> 00:15:36,920
need it.

407
00:15:37,379 --> 00:15:38,200
And so

408
00:15:39,514 --> 00:15:42,174
I know it's really hard to have these

409
00:15:42,634 --> 00:15:43,774
vulnerable conversations

410
00:15:44,154 --> 00:15:45,774
with your treatment team, and

411
00:15:46,554 --> 00:15:48,554
there's concern about what will they think about

412
00:15:48,554 --> 00:15:50,014
me? They've known me forever.

413
00:15:50,875 --> 00:15:53,934
They understand. They've been talking with many,

414
00:15:54,539 --> 00:15:57,100
many community members about these issues, and Right.

415
00:15:57,179 --> 00:15:59,200
They're not gonna be surprised about

416
00:15:59,659 --> 00:16:02,320
anything that you have to say. Right. Well,

417
00:16:02,459 --> 00:16:04,779
thank you so much for being here. And

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00:16:04,779 --> 00:16:07,419
your mission, your energy, everything is just is

419
00:16:07,419 --> 00:16:09,279
just a beautiful kind of

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00:16:09,955 --> 00:16:11,654
story about what advocacy

421
00:16:12,034 --> 00:16:14,754
can do to to really move the needle

422
00:16:14,754 --> 00:16:16,514
in in the in the best direction possible

423
00:16:16,514 --> 00:16:19,554
for this community. We really appreciate you helping

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00:16:19,554 --> 00:16:21,955
us raise awareness. Of course. You can find

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00:16:21,955 --> 00:16:25,500
all of our resources online at bdsumac.org.

426
00:16:25,500 --> 00:16:28,480
It is adding to the alphabet soup of

427
00:16:28,700 --> 00:16:29,680
healthcare jargon.

428
00:16:30,060 --> 00:16:32,220
Of course. So you could put that in

429
00:16:32,220 --> 00:16:33,820
the show notes so people don't have to

430
00:16:33,820 --> 00:16:34,879
try to spell Bdsumac.

431
00:16:35,259 --> 00:16:37,740
The other thing that's really exciting is we're

432
00:16:37,740 --> 00:16:41,434
partnering with, the National Bleeding Disorders Foundation and

433
00:16:41,434 --> 00:16:44,154
they just hired a brand new senior director

434
00:16:44,154 --> 00:16:47,675
of patient access. Erin Blocker is working with

435
00:16:47,675 --> 00:16:50,795
us and the community to help people get

436
00:16:50,795 --> 00:16:53,274
access to inpatient residential mental health and substance

437
00:16:53,274 --> 00:16:56,190
use treatment facilities. So in addition to talking

438
00:16:56,190 --> 00:16:57,490
with your treatment team,

439
00:16:57,950 --> 00:16:59,649
we now have a new resource

440
00:17:00,269 --> 00:17:02,910
available to everyone on our community who can

441
00:17:02,910 --> 00:17:03,410
help

442
00:17:04,190 --> 00:17:08,190
navigate this process and facilitate access for you

443
00:17:08,190 --> 00:17:09,730
or for your loved ones.

444
00:17:10,615 --> 00:17:11,115
Alright.

445
00:17:11,575 --> 00:17:13,335
Well, thank you so much again for your

446
00:17:13,335 --> 00:17:16,134
time. And, this has been Boundless Bee, the

447
00:17:16,134 --> 00:17:18,694
Hemophilia Bee Podcast, the podcast standing with you

448
00:17:18,694 --> 00:17:20,934
from a family like yours, presented by the

449
00:17:20,934 --> 00:17:23,335
Coalition for Hemophilia Bee and in partnership with

450
00:17:23,335 --> 00:17:25,820
Balanced Life's Issues. Again, we will throw all

451
00:17:25,820 --> 00:17:28,220
these resources into the show notes for you.

452
00:17:28,220 --> 00:17:30,220
And don't forget, you can always reach out

453
00:17:30,220 --> 00:17:31,759
to your hemophilia B

454
00:17:32,140 --> 00:17:34,000
organization, hemobee.org.

455
00:17:34,380 --> 00:17:35,900
All kinds of great stuff on the website

456
00:17:35,900 --> 00:17:38,625
under education resources and events. So make sure

457
00:17:38,625 --> 00:17:40,224
you check that out. And thank you again

458
00:17:40,224 --> 00:17:42,224
for your time, Kate. Thank you so much,

459
00:17:42,224 --> 00:17:44,224
Kai. Of course. Until next time, everybody. Take

460
00:17:44,224 --> 00:17:44,724
care.