CLINICAL NEWS
On Location
American Society of Hematology’s
SICKLE CELL DISEASE SUMMIT
A Call to Action
Sickle Cell Disease Experts
Seek Better Access to Care
n mid-April, more than 60 experts in sickle cell
disease (SCD), including clinicians and researchers,
federal agency partners, representatives from industry, and other members of the SCD community
convened at ASH Headquarters in Washington, DC,
for the ASH Sickle Cell Disease Summit: A Call to Action,
with the goal of advancing outcomes for individuals with
SCD. The Summit focused on issues both in the United
States and around the world.
The goal of the Summit was to identify highest-priority
actions needed to advance outcomes for persons with SCD
and map a plan to advance those actions in the short-term
(less than 5 years) and long-term (5 to 10 years).
Underused Effective Therapies
Two key discussion themes were access to care and research priorities,
both of which, according to Charles S. Abrams, MD, ASH PresidentElect, chair of the Summit, and a member of the Summit Steering Committee, are “historically very tough nuts to crack.” The first of these is a
glaring problem, given that existing effective treatments do not reach the
majority of individuals – especially adults with SCD – who could benefit
from them. “There’s not enough funding, not enough knowledge, and
not enough education for both patients and physicians,” Dr. Abrams said.
Dr. Abrams expressed particular concern over the low usage of
hydroxyurea, which may contribute to adults with SCD being twice as
likely as children with SCD to be treated in a hospital emergency department (1.3 visits/year for adults vs. 0.65/year for children).1 Adults are
also more likely to be admitted to the hospital (1.7 admissions/year vs.
1.2 admissions/year). In addition, most SCD patients have public insurance through Medicaid or a managed-care organization.
“Both hematologists and primary-care physicians seem to not be
‘plugged in’ to adult patients and are often not providing what has been
shown to be helpful,” Dr. Abrams commented.
While hydroxyurea requires monitoring because of potential toxicities, it does reduce long-term complications. Other experts at the SCD
Summit echoed this frustration over underuse of hydroxyurea. )