In 2021,
a young man named Derek, who had severe
hemophilia and a history of mental health and
substance use, hit rock bottom. And he did
what we hope everyone will do. He wanted
to turn his life around, and so he
went to his hemophilia treatment center nurse and
asked for help. She called all the substance
use disorder treatment facilities in the area, and
none of them would take a person with
a bleeding disorder.
Welcome 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.
Today, we are joined by Kate Basinski, public
health professional, fierce advocate, mother of a child
with severe hemophilia a, and chair of the
bleeding disorders, substance use, and mental health access
coalition or BD SUMHAC for short. Today, we're
going to look at how stigma, misunderstanding,
and system gaps can cost lives and how
this community is fighting back with advocacy, data,
and heart. Welcome to the podcast, Kate.
Thank you, Kai. I'm excited to be on
the show. Well, it's wonderful to have you
as always, and I'm really looking forward to
you sharing your story on how you got
to this place. And I guess let's just
start there, your background in public health.
Sure. So I have a background in health
policy and politics.
I worked for a member of Congress for
about a decade doing his health policy on
Capitol Hill. I got my master's of public
health at Johns Hopkins
and then did state, primarily state based healthcare
consulting
work
until I had kids.
And my son was born with severe hemophilia
a. Tell us about that experience because I
know that, you know, being in public health
and then
having a child who's going to need
support. Can you talk us about the emotions
of that moment? Well, I didn't know that
I carried the gene for hemophilia.
We had no family history, and so I
was really shocked.
Mhmm. I wasn't sure what it was gonna
mean for my family, and it was a
really scary and overwhelming moment. Did becoming a
parent with someone with hemophilia
change how you focus your advocacy? Because obviously
you're already in public health, and now it's
even more personal. So did it change kind
of where you took your energies at that
time?
Absolutely.
I had not
been working in the bleeding disorders community prior
to his diagnosis.
I had actually been lobbied by the bleeding
disorders community when I was working on Capitol
Hill many years prior, but I
became, when we I stepped into this role,
when I became part of the community, I
joined the board of the New England Hemophilia
Association. They are our local
chapter in New England and helped them with,
with their strategic
planning process. And I became I started doing
some fundraising for the community as well and
became somewhat of the default advocacy person on
the board because of my background.
Mhmm.
So and it's, I mean, your background is
incredible, right? And it kind of it's almost
beautiful in a way that you have all
this experience that you can lend directly
to your family. Through your experience sitting on
these boards, especially now, can you talk to
us a little more about the experience required
to help, right? Whether it's fundraising or sending
letters or making calls,
just tell us more about how listeners out
there can approach these organizations
less cautiously,
given no matter what their background could be.
I think the the best advocates
are those who have a story to tell,
who have an experience that
they can use to change policy, to change
hearts and minds, and they're willing to be
vulnerable and to sharing.
Yeah. And I think that
you don't need to have any
background
or experience. It's really about your willingness
to be authentic
and to share
what has happened to you. Yeah.
Yeah. That that's so well said and I
think so important because it is those stories.
We we've interviewed a lot of public health
officials and but we hear it straight from
them. It is that story
that, you know, somebody essentially
barged into my office to tell me that
that got the needle to move in the
right direction. Also remembering that you're talking with
people.
I think that especially today, and when so
much of the debate happens in social media,
it feels really removed from the humanity of
folks. Absolutely.
But when you have an opportunity
to sit down and talk with someone human
to human
and say, this is what's happened to me,
these are the consequences
of the, the policy
that you have supported or that's
been enacted,
those human stories can move people and
and make a difference.
Yeah. Yeah.
So speaking of human stories, why don't you
tell us about the call that kinda changed
everything for you as it concerns the the
current work you do with BD Sumac?
Absolutely. Mhmm.
So in 2021,
a young man named Derek, who
had severe hemophilia and a history of mental
health and substance use, hit rock bottom.
And he did what we hope everyone will
do, which is ask for help.
He wanted to turn his life around, and
so he went to his hemophilia treatment center
nurse
and asked for help.
And she called all the substance use disorder
treatment facilities in the area, and none of
them would take a person with a bleeding
disorder,
especially one who needed infusion medication. And without
access to the treatment that he needed, Derek
overdosed and he died. And
so his hemophilia treatment center nurse, Jen Feldman,
was
shocked
and, and didn't know exactly what to do.
So, she reached out to the New England
Hemophilia Association,
and I was sitting on the board at
the time. And because I was the advocacy
person, it kind of fell
in my lap.
And his story really affected me because,
you know, being from a, a good Irish
Catholic family, we have
a lot of mental health and substance use
issues in our family. Mhmm.
And I wanna make sure that if my
son
ever needs treatment, that he would have the
same opportunity
that anyone else would. And so it was
really the sense of
wanting to ensure that our community
has that same ability
to access care
and that same opportunity
for hope and recovery
that everyone else does that really drove me
to, to this work. So given the problem
you saw, tell us a little bit about
what you've uncovered and, and how are you
taking it in a direction that can help
members of this community get mental health and
substance use,
help if, if needed?
Absolutely. The first thing as a public health
person, I wanted to look at the data.
Of course.
Someone has to.
We wanted to understand whether
Derek's story was just a tragic,
but one off incident, or
whether it was indicative of a broader pattern.
So we conducted a survey of all the
hemophilia treatment centers nationwide
and found that eighty three percent of providers
who had attempted to refer a person
with a bleeding disorder to inpatient or residential
mental health or substance use treatment
received a denial.
That's devastating.
That's a devastating number. It was really
I I was floored when I saw the
data, and it was true
in states across the country for both adults
and for kids. So what what do you
think was at the core of that
denial of service that everyone else was getting?
So
we followed up with interviews with the sir
with the providers, and we found that the
number one reason was related to the infusion
medication. The facilities were really concerned about the
use of infusion meds.
Because of past drug use or because they
the clinician or the folks working there wouldn't
know how to administer it? I think it's
a little bit of all the above. There's
fear related to the the use of infusion
medications. They don't want needles in their facility.
Right. They don't feel confident in giving the
medication,
or they're not sure their license will allow
them to give this medication. They're not
certain they want to have someone self infusing
in their facility. So there's a lot of
concern related to the infusions. But we also
saw
that folks who don't use infusion medication, but
simply carry the diagnosis of bleeding disorder, were
also denied access.
So there is
fear and stigma related to an unfamiliar medical
condition
that sounds
scary, that is preventing us from getting the
access we need. Just imagine if you were
told you're too complicated
to treat. Not getting access to the same
healthcare that everyone else does just because of
stigma or a lack of understandings. I think
more to the point of what your organization
does of informing,
gathering data, and and getting people the help
they need is just so important. I guess,
tell us a little bit about why this
should matter to the hemophilia B community. And
then, you know, maybe from that, what's exciting,
what's hopeful about the work that you've done
over the years?
Absolutely. But I think I just
want to follow-up on, on one thing you
said because I think it's so important. And
that is
that when people are told they're too complicated,
especially
people who are struggling with substance use,
and, and they have found the courage within
them to ask for help. Mhmm.
And then they're told no. Right.
I, I have one member of our coalition
who
struggle with substance use, and he talks about
those windows of opportunity.
And
he went to seeking treatment on a number
of occasions.
And every time
they said no,
the window of opportunity for recovery closed and
he went right back to using. Right. Because
it's not a linear journey. It's not a
linear journey. Yeah. And so it, it is
really devastating
when
people are denied access
and,
and that might be the only chance they
get. Yeah.
Right. And I guess, you know, that you
ended up answering the question in a way,
like, why does this matter to the hemophilia
community? Because there are so many of us
out there who who are affected by substance
abuse and mental health,
you know, needs or disorders. Talk to us
a little more about how,
you know, BD Sumac works with the coalition
and, you know, what what's giving you hope,
right now with with the work you do?
Absolutely. Our community really does need access to
mental health and substance use treatment. As you
know, people with chronic conditions,
hemophilia
b, and chronic conditions generally have higher rates
of mental health
issues. The data in our community shows that
as well. There was one study, recent study
of folks with von Willebrands
that found that sixty three percent
of folks with VWD
reported
significant symptoms of depression
and fifty eight with significant, fifty eight percent
with significant symptoms of anxiety.
And when you have low VW
factor, so you, you're, have a more severe
condition,
the rates of depression skyrocketed
up to eighty six percent.
So it's just such a needy
community. And on the side with substance use,
our community really needs access because although we
don't have that same level of data looking
at substance use in our community, we need
a little more research there. We know that
our community has struggled with pain, that some
studies have shown that as many as two
thirds of folks with
severe hemophilia
struggle with
ongoing
chronic pain, and many of them are prescribed
opioids.
Right. Amidst sore pain. Amidst the, you know,
opioid epidemic,
which is its own conversation.
Yeah. And I guess for this and admittedly,
you're not a clinician, but you know there's
a need that is real, and we're not
gonna give mental health or substance use advice
by any means now, but just
building those bridges between care teams and the
professionals that will give you help. I'd say
that's kind of where you live. So talk
to us about that. And,
I guess, how does somebody ask for help
given everything you've discovered?
Absolutely.
The good news is
that we know with the right advocacy and
support, people can get access. So we've done
a lot of work over the last three
years in
developing tools. We have changed some national regulations.
We've gotten some new language into federal regs.
We are are doing a lot to make
it easier for people to advocate for themselves
in conjunction with their their bleeding disorder treatment
teams. We conducted a provider impact survey this
summer or this spring rather that looked at
how the impact of our coalition on access
over the past three years. And what we
found was in talking with those, the same
HTC providers,
that 86%
of HTC providers are now able to get
their folks access to treatment. That's not all
the time. It's not to say that they
don't get denials, but with the tools and
scripts and advocacy
that we have supported them in, they are
able to get
their
people with bleeding disorders access to the treatment
they need. So we know that access is
possible.
Mhmm.
That a denial is not the end of
the story.
It's the beginning of advocacy. Yeah.
And does that start with your care team?
Like this Well the conversation?
Absolutely.
We really recommend
for everyone because there are these unique barriers
to accessing the bleeding disorders community. It's really
important for everyone to talk with their bleeding
disorder treatment team
early, often,
and honestly
Mhmm. About any
mental health or substance use concerns they might
have.
I think can you go back to the
honest
honesty piece? I think we all struggle being
honest at the doctor no matter what it
is we're talking about. So talk about the
importance of that.
I think it's it's so important. I was
I was talking with a community member
who
was was kinda joking about how, you know,
he knows how to take the screening tests
so that his provider team won't ever ask
him any follow-up questions. Right. So he know,
he knows how to pass it without actually
having to have a real conversation about mental
health or substance use. And sure,
you can do that. But
the problem is if you let these issues
go, the concerns linger.
Right. You may not be able to get
access
in the crisis Right. When when you really
need it.
And so
I know it's really hard to have these
vulnerable conversations
with your treatment team, and
there's concern about what will they think about
me? They've known me forever.
They understand. They've been talking with many,
many community members about these issues, and Right.
They're not gonna be surprised about
anything that you have to say. Right. Well,
thank you so much for being here. And
your mission, your energy, everything is just is
just a beautiful kind of
story about what advocacy
can do to to really move the needle
in in the in the best direction possible
for this community. We really appreciate you helping
us raise awareness. Of course. You can find
all of our resources online at bdsumac.org.
It is adding to the alphabet soup of
healthcare jargon.
Of course. So you could put that in
the show notes so people don't have to
try to spell Bdsumac.
The other thing that's really exciting is we're
partnering with, the National Bleeding Disorders Foundation and
they just hired a brand new senior director
of patient access. Erin Blocker is working with
us and the community to help people get
access to inpatient residential mental health and substance
use treatment facilities. So in addition to talking
with your treatment team,
we now have a new resource
available to everyone on our community who can
help
navigate this process and facilitate access for you
or for your loved ones.
Alright.
Well, thank you so much again for your
time. And, this has been 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
Balanced Life's Issues. Again, we will throw all
these resources into the show notes for you.
And don't forget, you can always reach out
to your hemophilia B
organization, hemobee.org.
All kinds of great stuff on the website
under education resources and events. So make sure
you check that out. And thank you again
for your time, Kate. Thank you so much,
Kai. Of course. Until next time, everybody. Take
care.