Interview
Grassroots Lobbying Efforts
Lead to a Win for SCD Patients
in Tennessee: An Interview with
Michael R. DeBaun, MD, MPH
Michael R. DeBaun, MD, MPH
Sickle Cell Treatment Act of 2003
The Sickle Cell Treatment Act of 2003 was signed into
law by President George W. Bush. The act amended title
XIX (Medicaid) of the Social Security Act (SSA) to include
“primary and secondary preventative medical strategies,
treatment, and services, including genetic counseling and
testing, for individuals who have sickle cell disease (SCD) as
medical assistance under the Medicaid program.”
The legislation included four main components:
• Providing additional funding for eligible Medicaid recipients for primary and secondary preventive physician and
laboratory services related to SCD that were not previously covered by Medicaid
• Allowing states discretion in approving receipt of 50-50
funding match for non-medical expenses – such as
genetic counseling, community outreach, education, and
other services – related to SCD treatment
• Creating 40 SCD treatment centers at Federally Qualified
Health Centers through an annual $10 million competitive grant program for five years
• Establishing a National Coordinating and Evaluation
Center operated by the U.S. Department of Health and
Human Services to coordinate and oversee SCD funding
and research – including the collection, monitoring, and
distribution of information on best practices related to
managing SCD among individuals older than 5 years
Dr. DeBaun was the physician co-author of the bill introduced by Senator James Talent of Missouri, who was the
recipient of the ASH Public Service Award in 2004.
SOURCES
• S.874 Sickle Cell Treatment Act of 2003. 108th Congress (2003-2004).
• SCDAA. Legislative Initiatives. Accessed May 21, 2015 from www.sicklecelldisease.
org/index.cfm?page=legislative-initiatives.
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ASH Clinical News
Sickle cell disease (SCD) is the most common, inherited red blood cell disorder
in the United States – affecting 70,000 to 100,000 Americans. Although new
approaches in managing SCD have improved diagnosis and supportive care
over the past decades, most patients still suffer severe complications from the
disorder, and many encounter barriers to accessing high-quality care.
On April 20, the Tennessee legislature passed Tennessee Senate Bill 1074,
which authorizes TennCare, (Tennessee’s Medicaid program) to provide medical
assistance for SCD management services and for public education campaign
activities related to the disease. The bill was passed through a successful
grassroots advocacy movement spearheaded by hematologists and advocates
at Vanderbilt University in Nashville. With the passage of this bill, Tennessee
becomes compliant with the Sickle Cell Treatment Act (SCTA) of 2003 (see
SIDEBAR) and is eligible to receive federal 50-50 funding match for nonmedical expenses related to SCD, such as genetic counseling, community
outreach, and education. The actions mandated in the bill will take effect
January 1, 2016.
ASH Clinical News recently spoke with Michael R. DeBaun, MD, MPH,
director of the Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease
in Nashville, Tennessee, about his role in getting this important legislation
passed and how other hematology specialists can become more involved in
legislative advocacy in their states.
ASH Clinical News: How
did you first get involved
in advocating for patients
with SCD?
Michael R. DeBaun,
MD, MPH: About 18 years
ago, when I was at St. Louis
Children’s Hospital, I met a
state senator in Missouri and
was introduced to the power
of advocacy in the state capital.
In Missouri, I successfully
lobbied for families of patients
with SCD and made additional
resources available to them to
improve their care.
Tennessee Senate
Bill 1074 authorizes
TennCare, Tennessee’s
Medicaid program,
to provide medical
assistance for SCD
management services
and public education
campaign activities
related to the disease.
Can you discuss how
TennCare managed
patients with SCD prior
to the passage of this
legislation, and what
this new bill will do to
improve patient care?
Previously, patients with SCD had
coverage under Medicaid, but
the concept of education about
the genetics of sickle cell trait –
whether individuals had sickle
cell trait and the implications for
possibly passing the sickle cell
trait gene onto future children –
was never included. With the passage of Bill 1074, managed-care
organizations under Medicaid
can be held more accountable for
education about the genetics of
sickle cell trait and treatment and
management of the disease, particularly potential complications
associated with a stroke.
Prior to the passage of this
legislation, there was really no
accountability or emphasis on
educating the community about
SCD and its prevention. This
legislation has some “teeth” –
mandating that Medicaid-based,
managed-care organizations
be much more proactive about
educating the community about
SCD and sickle cell trait.
Tennessee’s Medicaid
program is run
through managed-care
organizations. How will
this bill affect treatment
of sickle cell through
these organizations?
We hope that with this new
legislation there will be an
emphasis on defining the roles
of Medicaid-based, managedcare organizations in improving the health of individuals
with SCD – both through
education about sickle cell
trait and with systematic sickle
cell trait screening and genetic
June 2015