feature
of reproductive age, so they could “put
themselves in the shoes of a new parent.”
“All I could ask for is a good
faith effort”
A
Maggie Dreon, MS, CGC, a genetic
counselor at the Minnesota Public Health
Laboratory, said, “I think when people
think about NBS, they think it is not
relevant to health equity; we test all
babies for all [state NBS] disorders. I think
the reason it is actually the opposite is
because there are certain populations that
are more likely to be impacted by some
disorders, and how we respond to those
specific communities needs to be specific
to ensure they get the optimal experience
from the process.”
The Minnesota laboratory has been
screening for sickle cell disease since
1988, identifying infants with the blood
disorder, those without the blood disorder
and those with a condition known as
sickle cell trait, characterized by the
presence of both normal and abnormal
hemoglobin. Individuals with sickle cell
trait will never develop symptoms of
sickle cell disease. But, as “carriers,” they
face a one-in-four chance of passing the
disease to their biological offspring, if they
have a child with another carrier.
Children with sickle cell disease, said
Dreon, “will have to be followed by a
hematologist, will need to start certain
meds in their infancy to reduce the risk
for sepsis. They will experience anemia,
will develop pain crises and can have
strokes. It is a systemic disease and
requires lifelong, extensive care.”
While only about 25 Minnesota babies
are diagnosed with sickle cell disease
each year, roughly 1,100 are identified
as carriers (out of approximately 67,000
babies born in Minnesota annually).
In 2015, the public health laboratory began
examining how sickle cell trait findings
were communicated to affected families—
who are mostly African-American or West
African. Based on a survey of pediatricians
10
Dreon said community members wanted
to know if their children were carriers and
“the pervasive community opinion” was
that no single method of sharing positive
sickle cell trait findings would work for
everyone.
nother success story
comes from Minnesota
and relates to a test area
not usually associated
with health equity:
newborn screening (NBS).
LAB MATTERS Summer 2018
The Minnesota laboratory has been screening for sickle cell
disease since 1988
“When people think about NBS,
they think it is not relevant to health
equity; we test all babies for all
[state NBS] disorders. I think the
reason it is actually the opposite is
because there are certain populations
that are more likely to be impacted
by some disorders, and how we
respond to those communities needs
to be specific to ensure they get
the optimal experience from
the process.”
Maggie Dreon, MS, CGC, genetic counselor,
Minnesota Public Health Laboratory
and other newborn providers, the
laboratory determined that, in 74% of
cases, the information wasn’t shared
at all.
This gap, said Dreon, represented a
missed opportunity: “This could be the
first time the parents find out [at least one
of them has sickle cell trait].” She said,
“Our goal isn’t to tell two people, both
with [sickle cell] trait, not to have children,
but rather to make sure families are
informed about their reproductive risks.”
The Minnesota Department of Health
then conducted a series of key informant
interviews with community leaders and
hosted five focus groups in the Twin
Cities and a suburban West African
enclave. Focus group participants
had to be parents, had to be African-
American or West African, and had to be
As one focus group participant said,
“Some will prefer phone calls, some
will prefer letters, some will prefer an
in-person [meeting]. Is there a way to do
all three? Is there a way to do at least two
out of three? I think that all I could ask for
is a good faith effort.”
Thus, today the laboratory uses a multi-
prong approach, with notification to
infants’ physician of record or the clinics
likely to follow the infants and, for the
first time ever, directly to parents via
US mail. In addition—because parents
wanted access to a sickle cell expert—the
public health laboratory created a position
for someone certified in sickle cell
counseling.
After the new process was established,
a follow-up physician survey found that
doctors now discuss positive sickle cell
trait findings with families 59% percent
of the time, up from 26% previously. And
post-intervention focus groups confirmed
that families “felt more empowered
because they had this information,”
Dreon said.
Finally, the Minnesota Department
of Health began a working group to
address challenges faced by the sickle
cell community. For example, said Dreon,
“Kids with sickle cell disease have pain
crises, and they present to the ER with
excruciating pain, and the treatment is
opioids. And it’s going to be a high dose.
It’s very likely a black individual [seeking
pain relief] who is labeled a drug-seeker
and met with a lot of resistance. There’s
published literature showing they’re likely
to encounter treatment delays.”
Anytime you engage the community,
Dreon said, “it’s a bit of a Pandora’s Box,
but that’s the point.” Or, in other words, to
uncover health inequities, you first have
to look for them. n
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