FEATURE
counseling. We have high expectations that holding Medicaidbased, managed-care organizations accountable to the law will
improve the lives of sickle cell
patients and their families.
Grassroots lobbying was
key in the effort to get this
legislation passed. Can you
discuss some of the efforts
you were involved in?
We worked with the communitybased organization The Sickle
Cell Foundation of Tennessee to
raise awareness about this bill.
That included identifying families
who were affected by SCD across
the state – from small municipalities and rural areas, to larger
cities like Chattanooga, Nashville,
and Memphis. Those families
were invited to Nashville for two
days so that we could learn more
about their needs and their experiences in the health system.
The first portion of the meeting included a variety of activities
to understand their views about
patient-centered metrics, such as
the importance of being re-admitted
within 30-days, having to take
days off from work or school due
to illness, and outpatient medical
care services.
The second portion of the
meeting was devoted to teaching
the power of lobbying. We had a
lobbyist educate families about
what lobbying meant and received
feedback from our families about
what some of their anticipated
anxieties and concerns were. An
important part of this activity
was role-play; about six of the 20
families in attendance had to act
out how they would approach their
state representative or state senator
to discuss the SCD legislation. We
then provided additional support
and suggestions about strategies to
communicate the main message of
the bill that was being voted on.
Next, we went through the routine for the visits to the state capitol
and reviewed the expectations for
the day. At the state capitol, we set
up a common meeting place; there
we had a billboard with information about SCD and the bill, and we
also had sickle cell-shaped cookies
made with the name of the bill on
them. We knew that the families
were only going to have a brief
amount of time with their state
representative or senator, so we had
these types of efforts in place to get
the most out of that time.
Based on your success
with this legislation, do
you think similar programs
could work in other states?
Yes, I think this process can
be replicated in other states.
However, it’s not an easy task.
The grassroots approach requires
quite a bit of planning, and it is
not an easy undertaking. For us,
this was an 18-month process.
To start, we reached out to
a person who was familiar with
elected state representatives and
who subsequently identified a key
leader in the House who would
be influential in getting this bill
passed. We then met with that
representative and discussed a
“ egislators want to do what
L
is right, but they may not
fully understand how to address those issues.”
—MICHAEL R. DEBAUN, MD, MPH
strategy to introduce the bill. I
was also fortunate enough to have
the help of Brianna Hawkins,
BA, a young, energetic Vanderbilt University pre-med graduate
student. She did all of the difficult
and necessary preparatory work,
from reaching out to the families
to distributing talking points for
when those families spoke with
state legislators, to organizing the
two-day meeting. Our families,
health-care providers, and staff
from the various medical communities (Vanderbilt, St. Jude
Children’s Research Hospital, University of Tennessee, and Erlanger
Children’s Hospital) throughout
the state were unfamiliar with the
lobbying process and had to be
educated about key talking points
when meeting with the legislators
– as the liaison for these different
parties, Ms. Hawkins was critical
to the success of our efforts.
Another key to the success of
our grassroots approach was the
Sickle Cell Treatment Act, which
was signed into law by President
George W. Bush as part of the
American Jobs Creation Act of
2004. The law provided a template
for the state legislator, Rep. Harold J. Love Jr., of Tennessee, to
follow when constructing the bill.
How would you encourage
other physicians concerned
about patients with sickle
cell to get involved?
I now have lobbied for SCD in
two states. My experience has
been that legislators want to do
what is right, but they may not
fully understand what the issues
are and how to address those
issues in a way that is beneficial
to citizens of the state. I am optimistic that the grassroots strategy
can be replicated and improved
upon in other states with the
right combination of parties and
tactics: an informed hematologist
who brings credibility to issues;
an informed and active patient
advocacy group; targeted lobbying strategies, which often requires a professional lobbyist; and
then, last but not least, the right
legislator who has the influence
to persuade his or her colleagues
that this is the right thing to do
and the right time to improve
care for individuals with SCD. ●
Introduction of a Resolution Calling for Sickle Cell Trait Research
in the U.S. House of Representatives
In early June, Representatives Barbara Lee (DCA) and Michael C. Burgess (R-TX) introduced
a resolution in the U.S. House of Representatives calling for expanded government efforts
to increase sickle cell trait (SCT) research and
improved access to screening and education
for individuals with SCT.
SCT is estimated to affect more than
300,000 people in the United States – many
of whom are unaware of their status. SCT
needs to be distinguished from sickle cell
disease (SCD).
Although a rare occurrence, individuals with SCT may have a heightened risk of
certain complications, and they can pass the
defective gene along to th Z\