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geoff: An estimated 16 million
Americans are suffering from
long covid, according to the
census bureau.
The condition develops after
someone contracts covid, tests
negative, but continues to have
symptoms, which can range from
mild to debilitating.
I recently talked to Dr. Monica
verduzco-gutierrez, a professor
from university of Texas health
San Antonio, and Karyn bishof,
the founder of the covid-19
longhauler advocacy project
about what is being done to
treat this illness and support
those who are suffering.
Karyn, I want to start with you,
because you contracted covid
back in March 2020, working as a
paramedic in south Florida.
When did you first realize that
you had long covid symptoms?
Karyn: After getting covid in
March 2020, I for about five
weeks felt like I was getting
better, but I wasn't getting
better as quickly as everybody
else.
In symptoms that I had that had
went away were coming back,
symptoms that I never had before
started.
And these were symptoms that you
never heard of, right?
We only heard about fevers and
shortness of breath and having a
cough.
These were symptoms that weren't
in the mainstream media that
many long haulers are struggling
with because our providers
didn't believe us that these
were related to covid.
So that five, six, seven, eight
week mark, you hear notoriously
from long haulers about being
the start of their long covid.
Geoff: Yeah.
How are you feeling now?
Are you still struggling with
long covid symptoms?
Karyn: The number of long covid
symptoms that I still deal with
are way too numerous to even
mention.
I still deal with over 80 two
and a half years in.
Aging syndrome and cfs,
fibromyalgia.
I've been diagnosed with also
chronic migraine and new daily
persistent headaches,
eosinophilic esophagitis and
many, many other debilitating
conditions.
When you have these alone, it's
debilitating.
Imagine having long covid and
all of these conditions
combined, which are referred to
as long covid and associated
conditions.
Geoff: And Dr. Gutierrez, what
about that?
Where does the current research
stand and what are the public
health consequences of long haul
covid?
Dr. Gutierrez: Research is
coming out every day, but it's
still not fast enough.
Really right now in regards to
long covid, we're still trying
to figure out, you know, who are
the people that are getting it,
what is the presentation?
What is the official definition?
There is still so much that we
have to learn, and it's
unfortunate that there are
people who are suffering on a
daily basis and we still don't
have the answers.
And we did really well on doing
really quick research when it
came to getting vaccines and
getting these acute treatments
to keep people from dying, which
is wonderful.
But now we need to put that same
energy, focus, financial backing
into getting treatments for long
covid.
Geoff: Karyn, and you touched on
this earlier, but I just want to
draw you out on this.
How difficult has it been to get
assistance from the government,
especially because now I imagine
you test negative for covid,
even though you still have the
symptoms of it.
Karyn: Yeah.
I mean, I think a lot of people
hear long covid and they assume
that somebody is still positive.
Long term consequences of your
covid-19 infection, whether or
not your case was mild, means
that you are seeking medical
care from providers who are not
receiving mandated education on
long covid and associated
conditions.
That means you're facing medical
providers who have wait times of
six months, 12 months, 18
months.
And when we're talking about the
lack of social safety nets,
which is one of the largest, if
not the largest barriers that
the long covid community faces,
we're talking about long haulers
who cannot even access waivers
or forms that they need to get
into many of these social
support programs like social
security, disability, where long
covid is not an accepted or
recognized condition, per se.
But also to get workplace
accommodations, to get into
programs that require work
requirements, sometimes like
food assistance or temporary
cash assistance.
Geoff: Dr. Gutierrez, when Karen
talks about the long covid
community, who is that?
What groups are most affected by
long haul covid?
Dr. Gutierrez: Now we know that
long covid can happen to anyone.
The majority of people who
develop long covid had mild
covid.
The other numbers that we're
seeing is that it's going to be
a population of people who are
in their forties and fifties and
also disproportionately affect
women as well.
We are also seeing in the
household pulse survey that
recently came out and what is on
the CDC website talks also about
populations who are
marginalized, inclusive of
persons who are hispanic, black,
who of course, we know have also
been disproportionately affected
by getting covid, also have more
long covid as well.
So it really doesn't matter the
background of the person as far
as, you know, were they healthy,
were they not healthy, their
age.
There is going to be a risk of
getting long covid.
Geoff: Is there a specific
diagnostic test yet to determine
whether or not someone has long
covid?
Dr. Gutierrez: No, we don't have
that.
We don't even have a good
standard definition because what
the CDC says, the nih, the world
health organization, even those
definitions are a little bit
different when you compare
across.
Geoff: And then beyond all that,
Karyn, what more should be done
to help give people suffering
from long covid the help that
they need?
Karyn: I think, again, the
biggest help that we need is
national education and awareness
campaigns.
More than half of the country is
still never even heard the term
long covid, let alone understand
what that encompasses.
And I think that the response
that our community has right now
is we have no hope.
And we see the messaging of
everyone's going to get covered
-- get covid at some point.
But there's no messaging of if
you are that one in five who get
long covid or if you are that
41% that we found in our
community that has filed for or
is about to file for social
security disability, and you
don't have a plan and you don't
have a backup and you don't have
a support system in your family
or anyone else who can help you,
and there are no social safety
nets there are no government
, programs that can help you,
what do you do?
We're seeing people ration
medications.
We're seeing people forego
medical care, which is leading
to even worse medical conditions
or potentially even death down
the road.
And that's a failed public
health policy that we can easily
address, but we're refusing to
do.
Geoff: I thank you both for your
time and your insights on this
important topic.