PKD Life - Fall 2022 - 18

underrepresented patients might be
misdiagnosed, a speculation that hasn't
been confirmed. Yet other concerning
data has emerged:
* Black/African American and Hispanic/
Latino patients are more likely to
begin dialysis rather than receive a
preemptive transplant, which is the
better standard of care.
* Only 1 in every 20 Black/African
American PKD patients receives a
preemptive transplant compared
with about 1 in every 5 white/Caucasian
patients.
" When you talk
to people in
communities of
color, it becomes
clear that
oftentimes PKD
just isn't really
diagnosed as
early as it
can be. "
* Black/African Americans are the least
likely to receive a preemptive transplant
among other racial and ethnic
groups. These lower transplant rates
persist across the U.S.
* There are large gaps in kidney donation
rates for Black/African American
patients.
* PKD patients of color in the U.S. older
than 30 who developed kidney failure
between 2000 and 2018 were less
employed, had less insurance, and
received less nephrology care than
their white counterparts.
As with many other diseases, these
disparities are thought to be due, at least
in part, to social determinants of health,
which include language barriers, lack
of access to information and education,
and lack of access to quality and
specialty healthcare providers. Implicit
racial bias may also affect PKD patients
from underserved communities.
" When you talk to people in communities
of color, it becomes clear that
oftentimes PKD just isn't really diagnosed
as early as it can be, " says Carmen
Gleason, chief operating officer of the
PKD Foundation. " We have heard some
really interesting things from focus
groups we've conducted. "
For example, if a physician diagnoses
hypertension or diabetes, they may
not take it further and also look for
PKD in patients of color, particularly
if the patient doesn't know their family
history. Instead, the physician may
just make a quick diagnosis and start
addressing the patient's diet rather than
ordering a sonogram to check for PKD
18 PKD LIFE * FALL 2022
and, if a diagnosis is made, starting the
appropriate treatment.
KNOWLEDGE IS POWER
How can PKD patients of color ensure
they aren't overlooked when it comes to
getting the right treatments, including
transplants? Dr. Dahl believes that the
more patients know, the more they can
advocate for themselves.
" I think this is why it's so important to
be plugged into a network that supports
you. If you're from a family with a history
of PKD and you have high blood pressure,
get an ultrasound to see if you have PKD.
When you see your doctor, ask if you're
really getting maximal therapy or if there
are other therapies that are possible, "
she says.
In her practice, Dr. Dahl tries to make
sure her patients have access to knowledge
about the disease state so they know
what the process is. She starts seeing her
patients regularly as they progress and
talks to them about transplants. " I think
it's important to be able to get plugged
into a clinic that will support you like
that, " she says. " It's really critical. "
KEY FOUNDATION INITIATIVES
For those patients who may not be so fortunate,
the PKD Foundation has a number
of initiatives underway to address
these disparities. Their work involves collaborating
with other organizations such
as the National Kidney Foundation to
support the passage of federal legislation
to address health disparities involving
kidney disease along with other efforts
that will improve the way people of color
with PKD receive treatment and care.
" As an organization, we are working
to increase diverse participation in our
Patient Registry. This will lead to a better
understanding of the ADPKD-specific
racial disparities that exist in kidney
care and transplants so that we can help
address those issues, " Gleason says.
The Foundation is also addressing
accessibility by translating materials,
including the ADPKD Registry, into
Spanish. And the Peer Ambassadors
Program, of which Cayleigh Sanders is
a member, was launched this year to
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