PKD Life - Winter 2020 - 21

The Pros and Cons of PKD Testing

they want to get tested for the possibility that
they might feel relief if the child doesn't have it,"
she says.

PROS
Motivation to

INSURANCE ISSUES

closely monitor

At this point, under the provisions of the Affordable Care Act, insurers cannot deny coverage to
anyone with a preexisting condition. But ongoing legal battles may eventually undermine this
protection. Getting a diagnosis may threaten a
patient's ability to obtain health insurance.
A diagnosis can also lead to higher insurance
premiums. "Right now, insurers cannot deny
you a policy if you have polycystic kidney disease, but they can definitely charge you more,"
Dr. Rahbari Oskoui says. The ability to buy life
and disability insurance can also be affected.

children's health

Possibly relieve
anxiety if the
diagnosis is
excluded
Promote healthy

lifestyle habits

LIMITATIONS OF THE TESTS

CONS
Tests can be

inconclusive and
expensive
Potential problems
attaining and paying
for insurance

Removes child's
ability to make the
decision themselves

May create
additional stress
if the diagnostic
studies support the
PKD diagnosis

Meeting wit h
a genetic
counselor
can help
you decide
which option
is right for
your family

Screening for PKD in children is usually performed with ultrasound or genetic testing-and
there are problems with both methods. When
using ultrasound to screen for ADPKD in children under 18, there's a 50% chance that the test
result will be inconclusive, leaving the family
in limbo, Dr. Rahbari Oskoui says. For ARPKD,
however, ultrasound is a useful screening
method because the vast majority of affected
children will have visible abnormalities.
Genetic testing is expensive and not always
covered by insurance-it can cost upward of
$4,000 out of pocket, plus it fails to detect PKD
in about 15% of people who have it. "You want
to be very careful about providing false reassurance," Dr. Hartung says.
Making the decision to test a child for PKD
is far from easy. "Every parent wants to eliminate harm and anxiety as much as possible,"
Full says.
It can help for families to meet with a genetic
counselor to discuss what the diagnosis means,
the chance that a child may have PKD, and
the implications of testing or not testing. Says
Full, "In the end, there's no right answer for
every family."

L E A R N M O R E A B O U T A R P K D AT P K D C U R E .O R G / W H AT- I S - A R P K D

http://www.PKDCURE.ORG/WHAT-IS-ARPKD

PKD Life - Winter 2020

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