We spend a lot of time barking at
one another. What really gets through to people
is human connection and storytelling. Think about what
they feel is the most relevant to them
right now and share that. That may be
as a caregiver. That may be as a
parent. That may be as someone with a
chronic condition, but all of those matter. It
doesn't have to be the most dire.
Welcome to Boundless Bee, the Hemophilia Bee podcast,
the podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee and in partnership with Balancing Life's Issues.
Today's guest brings a powerful combination of policy
expertise and storytelling savvy to the table.
Allison Betty is the cofounder of AlignCo, a
firm known for designing breakthrough campaigns that translate
complex policy into human centered action.
She's worked to promote and defend the Affordable
Care Act, protect Medicare and Medicaid,
and advocate for the kinds of policies that
uplift children, families, and patients across the country.
Allison, welcome to Boundless Speed.
Thanks so much. It's great to be here.
Just wanted to start out with a little
bit of your background, passion of the work
you do, because you've had such a unique
career from Capitol Hill to launching AlignCo. So
can you walk us through how your path
led you to become one of the country's
go to experts in advocacy driven communications?
Thank you. Well, I wish I could say
that was a a a linear path, but
it certainly wasn't and isn't for many people.
I wanted
to do what I could in my career
to make the world a better place. That
started with working on a campaign in Connecticut
for congresswoman Rosa DeLauro.
I was lucky enough to come to Washington
after she won that
election.
That was a great campaign.
And from there, had the great fortune of
meeting many people along the way
who taught me what advocacy looks like. And
advocacy
lives in many places, not just with advocacy
organizations.
Right? Mhmm. And I learned that from Rosa
DeLauro.
I learned that from Billy Shore at Share
Our Strength. And
I worked for a wonderful company called GMMB
for many years
that taught me how to do that across
many issues. So I'm excited to have my
own company and share that with others. Yeah.
Yeah. And I think that advocacy piece is
such an important thing, especially this year. And
I know
the coalition for hemophilia be, you know, needs
the community to kinda get behind this idea
of advocacy. So
can you maybe dispel a little bit of
the maybe anxious or nervous feelings people get
when they when they think about advocacy?
Yes. I think advocacy has been become kind
of a loaded word, hasn't it? Yes. When
and truth of the matter is that is
the main function that we all have to
speak out for ourselves and each other. We're
all advocates
because we all care. We care about our
neighbors. We care about the communities we serve.
We care about our families. And just as
if you were a patient advocate
for a child or a spouse in the
hospital and making sure they get what they
need.
We all are advocates looking out for one
another. So I think sometimes it gets a
little political
too quick
when in fact, I see advocacy
as simply speaking your truth and speaking out.
Yeah. Yeah. That's that's so well said. And
I think the political point is is really
unfortunate right now because
I I don't know about you, but no
matter where I look, it just feels overwhelming.
It feels negative. It feels polarizing,
and it feels scary. And I I would
say that across the board. And so I
think for the work of what you do,
this feels like a unique time in that
sense. But what keeps you inspired and grounded
in in this work, especially when things just
feel so charged?
I believe in the power of, humans, and
I believe in the power of the human
spirit. And I believe that both ways. We
are capable of great change.
We are experiencing
massive disruption right now.
Mhmm.
And we have certainly on the issues we'll
likely talk about, like Medicaid and Medicare and
health care issues, differing opinions.
But I don't think a day goes by
when if I'm present and I'm aware
to notice
the small kindnesses that happen between all of
us every day. Mhmm.
In fact, today's a very hot day in
Washington, DC. I was driving to work, and
there was a gentleman in a car in
front of me passing out cold bottles of
water to people
who, were likely unhoused. Right. What he could
do that day. Mhmm. And I believe we
all do those kind of micro acts of
kindness, and those things add up.
So I try not to let the larger
crises that feel existential
get in the way of the way I
see humans.
Yeah. That I mean, that's that's so beautifully
said. And I think from, you know, like,
how I feel about it is you can
shut down so easily. Right? When those kinda
existential things that are either perceived or or
real just kinda feel like they're crashing down
on you. So I think the challenge
of not shutting down and continue to advocate,
and I think especially in I think your
specialty, which is, you know, health care policy.
Because I know you have you know, that
that's a big part of your background in
at Alignco.
So I guess for our listeners, I think
in as simple terms as possible, what's kind
of happening right now with with health care
policy, and how do you keep up with
it? And especially with kinda like rare diseases
like hemophilia b.
Well, it's really moving fast, particularly right now.
During this conversation, we are waiting for more
information from the senate as they work to
finalize
their reconciliation
bill. This is after the house has sent
their version over.
There is a great deal of confusion about
whether or not the senate will be ready
to pass this bill, which they'd like to
do before the July 4. And then it
will go back to the house, and there's
some concern that the house won't be happy,
of course, with what the senate has done.
Mhmm. Overall, on either bill,
the reconciliation
process
is one that only some things can pass
that have, what we call pay fors. Right?
They have to be they have to be
expensed and paid for, and it goes through
a great deal of review process with both
the parliamentarian
and the CBO budget office.
But
we can expect, no matter what at this
juncture,
pretty significant changes to Medicaid. I think the
most likely is a work requirement.
That
means that most people will have to prove
that they are either working
in some sort of caregiving situation in school
or others that has not been completely determined
in order to qualify for Medicaid benefits. Keep
in mind, and many of your listeners may
know this, you have to be pretty low
income to even qualify for Medicaid in the
first place. So this is an additional,
really cumbersome,
call it red tape.
Yeah. That is just one more thing people
have to do. Secondly, those on the health
insurance marketplace
will experience some changes that make it harder
for them to get that coverage.
Things like no more automatic renewals
and preverifications
before you even begin the renewal process, which
can be pretty significant.
And third,
an increase in premiums, and we expect we
expect to see that across the market.
So I guess what I would call this
in a way is like being nibbled to
death by ducks.
It's not one big change in one place,
although they are quite significant.
There are many more. I'm only mentioning three
that are larger, but there are many more
that have a significant impact on how we
access our care,
how we keep that care, and ensure that
we're getting what we need.
So I I think maybe what the listeners
need to hear about is, like, where can
we keep up with this information,
as things change? Well, first, I would say
we should not be resigned. This isn't over.
And the first thing that everybody can do
is make their voice heard.
And however they find that that's appropriate,
they wanna post something on social media.
Perhaps you wanna call your member of Congress,
your Senator. Perhaps you want to talk to
your friends and family and your neighbors and
be sure that they're aware of this.
It is very well reported.
You can simply Google it to find it.
But if you're looking for places and organizations
and patient groups that are keeping up with
this on a pretty regular basis,
I would say the American Heart Association,
the American Cancer Society, Cancer Action Network, which
is their advocacy arm, Leukemia and Lymphoma Society,
are three organizations that are doing kind of
some regular updates to patient communities.
Gotcha. Also, Families USA
is a great organization and Protect Our Care.
Those are all places that you can Google
and get the latest. Right. But the thing
that you can do now
is make your voice heard. Right. Because these
changes are significant and there's such lack of
awareness of this. When it all happens,
people are going to be very upset.
Right. And these things roll out over the
course of three years.
So it could feel like a lot of
small things when in fact it really adds
up. So right now, make your voice heard.
Make your voice heard. And I think it's
kind of that idea of, like, how things
manage to fly under the radar. So, you
know, making your voice heard. And I think
with that, there are so many voices being
heard out there. So could we talk a
little bit about misinformation
messaging and, like, health equity? Because,
you know, we see scientific breakthroughs
but that comes with a flood of information.
I what are some of the biggest challenges
you see when it comes to public understanding
Mhmm. Of health care policy concerning misinformation?
Look. I think the misinformation
is real, and I think it is very
difficult to navigate through social media. So I
would encourage
people
to make sure that they're getting their news
from multiple sources.
Would be the simplest way to do it.
That, that you, if you're on social media,
that you're also checking out traditional media sources
and not just how they're doing that on
social media. Because that misinformation is real and
look, it creates a lot of stress for
everyone Mhmm. To not know whether or not
you're getting the straight scoop and trying to
figure out who you trust. I think we're
even running into conversations right now about whether
or not people feel like they can trust
their doctors or is that becoming more politically
charged. Mhmm. So finding the people that that
you feel that you can trust is important
and sticking with them. Yeah. Anything that is
inflammatory,
points out hypocrisy,
or sounds too good to be true
is probably not where you wanna be on
the facts. Right.
And that's just basic media literacy. Our kids
are learning this in school these days. People
my age have to learn it a little
bit later on.
So, yeah. And there are some things that
are flying under the radar that are that
are we have reason to be concerned about.
Yeah. Yeah. I think, one one tip I've
got that stuck with me is, like, it
should be a little boring when you're reading
it. Right? Like, it should be very fact
oriented, and it shouldn't really have an opinion.
It should just kind of be kind of
telling you what's happening. So maybe listeners can
hold onto that little piece there. That's right.
And, you know, we're so used to an
I in communications, you know, it's all about
what's the headline. Right. Reality is we all
got we all have to read four or
five sentences after that headline. Yeah. Absolutely. And
I think in another one, you said reality.
I think that idea that we live in
separate realities. Right? That's a whole thing that
kinda happens. Like, no. We live we live
in this reality. It is the same thing.
Right? And it's kind of how do you
especially for the hemophilia b community with all
these changes and all the anxieties
of, you know, where's my medication gonna come
from? How is this gonna remain affordable?
How can you sift through that noise and,
you know, remain in a place of advocacy
and and and still moving forward? There's a
great book. It's many years old now. I
think it's called The Bubble that runs an
experiment
and asks puts Republicans in one room and
Democrats in the other or maybe conservative and
liberal and not by party. Ask them both
to Google Florida.
And one group gets political information and the
other group gets vacation information.
Right? This shows you how how separate they
are. Absolutely. I mean, it makes total sense.
So, you know, I I think kinda coming
off this this conversations about,
you know, health care, what what could possibly
be happening, like, making sure we're still raising
our voices out there in however way that
you can, whether it's sending a letter or
maybe it is going to DC. But, you
know, the little things do add up. And
if we go back to the interview we
did with Eric Paulson, he also works in
this world of, like, storytelling
and how can you get
the the story of that person who's going
to be affected to the right person in
the best way possible. So can you tell
us a little more about how empowering patients
and and people in our community with storytelling?
I think that something we often forget
is that we all have very compelling stories
to tell.
They don't need to be
particularly dramatic
to be compelling,
but we need to share our lives with
decision makers in a way that they can
see and feel and understand.
And that is beyond the headline and beyond
the sound bite.
In communications,
we talk about it as a dialogue.
It's not how many billboards and ads I
can put up.
It's my inviting a dialogue. Am I inviting
questions to begin a conversation? And
we spend a lot of time barking at
one another. Even when I worked on Capitol
Hill, you'd pick up the phone and it
was constituents yelling. Mhmm. Right?
But in fact, what really gets through to
people is human connection and storytelling.
Mhmm. So I really encourage people to think
about
what they feel
is the most
relevant to them right now and share that.
Yeah. That may be as a caregiver. That
may be as a parent.
That may be as someone with a chronic
condition,
but all of those matter. It doesn't have
to be the most dire. Mhmm. And that's
a place where we get a little bit
stuck sometimes. Right? We're kinda chicken little. The
sky is falling. Let's talk about all the
people that are gonna get hurt the most
when in fact we really do need to
have some unifying messaging there and also listen
to each other in order to encourage more
people to do it. Right. That takes time.
Yeah.
Yeah. And I I really like that the
idea that your story doesn't have to be
the most dire. Right? It is still your
story, and it still has emotion. It still
has human
elements to it. And you need to bring
that story no matter what it is. And
it could be the caretaker of someone with
hemophilia b. That is your story. That is
a journey.
That has its challenges. It has its triumphs.
That's right. And Anakka could also be the
patient who has the the same kind of,
like, trajectory, you know, with with the triumphs
and the challenges.
And the more the listeners out there
can share their story,
the better off this community will be. And
not just the hemophilia b community, but the
rare disease community,
who, you know, Medicare, Medicaid, and the Affordable
Care Act
have done
great work to to help help these families,
you know, get by and get through.
So I so I guess, you know, wrapping
up this conversation, one, did we leave anything
out that we absolutely need to touch on?
But two, I get just, like, maybe reiterate
what gets you to work tomorrow knowing that,
it feels like there's impending
changes that could affect so many people.
Two things I think are worth mentioning, Kai.
One is that
these changes are real and specific.
We're talking about almost a thousand dollar increase
in deductibles and cost sharing for anybody with
employer sponsored coverage.
We're talking about more paperwork and less time
to enroll for people that are on the
marketplace
and in Medicaid.
And we're expecting very large premium increases next
year, 24% in Tennessee, 21% in Washington, 19%
in Pennsylvania.
These changes are real, and they are coming
soon.
Therefore,
making a phone call, talking to a neighbor,
sharing your story, no matter what that story
is, is the everydayness
of this.
Because for example, in Medicaid, when we talk
about
what's going, what's going to happen and who's
going to lose their coverage in Congress, they're
talking about carve outs now. Oh, not people
with cancer. Oh, we're going to handle rural
hospitals in these areas. This is a sign
that people are going to get hurt. We
don't need to do carve outs. We need
to show that this is everyone and share
the everyday experience. I really encourage people to
just take one small action
today that feels doable.
The switchboard is (202) 224-3121.
You could call your member of congress if
that feels easy to you. And if not,
maybe a little bit something on Facebook or
Instagram. Well said. And thank you, Allison, cofounder
of Co Line, for being here today and
breaking down such complex policy with clarity and
heart.
Allison, you shared a few trusted resources today,
but I also want our listeners to know
that the Coalition of Hemophilia B is proud
to be part of something bigger. We are
members of the Partnership to Protect Coverage, a
powerful coalition of over 50 disease specific and
rare disease organizations,
working together to ensure that patients across the
country have access to affordable, high quality care.
This partnership strengthens our voice in Washington and
beyond and is part of how we advocate
on your behalf every single day. In fact,
our CEO, Kim Phelan, first heard Allison speak
through this very partnership
and was so impressed by her insight and
passion that we knew we had to bring
her voice to Boundless b.
As Allison so beautifully said, your voice, your
story, and your action matter. We at the
coalition will continue to keep you informed, supported,
and empowered.
Because when we speak up together, we are
impossible to ignore. Thank you again, Allison, for
your time. Thanks so much. 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 Balancing Life's Issues. Until next
time everybody take care.
This has been a production of Balancing Life's
Issues produced by me, Kai. Follow along with
other BLI produced shows at balancinglife'sissues.com.
Got an idea for the show?
Email me, Kai, at balancing life's issues dot
com, and be sure to follow and subscribe
to this show wherever you listen to podcasts.
Anything else to add, Miles?