UP FRONT
ASH Directions
‘It Takes a Village …
and We Need a Village’
Report on Sickle Cell Disease Suggests That Current State of
Treatment and Care is Inadequate and Improvements Are
Needed
“It takes a village …” was the theme running throughout the September 6 press
conference that launched the Sickle Cell
Disease Coalition – a partnership whose
goals are to amplify the voice of the sickle
cell disease (SCD) community, promote
SCD awareness, and transform SCD care
both in the United States and around the
globe. The event took place at The Knight
Conference Center of the Newseum in
Washington, DC, where ASH, along with
more than 20 other member groups,
released the State of Sickle Cell Disease:
2016 Report. This report focused on four
priority areas: access to care, training and
professional education, research and clinical trials, and global health.
In addition to these priorities, ASH
has committed to developing and implementing up-to-date guidelines for managing acute and chronic complications of
SCD and to educate health-care providers in a variety of settings – including
hematologists, primary-care providers,
and hospitalists – to recognize and properly respond to SCD symptoms in their
everyday practices. The Society is working
closely with the Emergency Department
Sickle Cell Care Coalition to support
their efforts to improve emergency care of
individuals with SCD.
ASH is also exploring the development
of a consortium of African countries to
institute a population-based registry study
for newborn screening and early intervention. The Society will continue to encourage SCD research through advocacy and
has developed research priorities in SCD
and sickle cell trait to encourage the study
of unaddressed questions that could impact these conditions. ASH continues to
work with Congress and federal agencies
to enhance and expand federal sickle cell
disease programs.
“There are unique challenges that
people with SCD face. For example, the
transition from pediatric to adult care can
be especially difficult, and many people
struggle to find health-care providers with
comprehensive knowledge and expertise
to provide proper care, especially in rural
communities,” said ASH Vice President
Alexis Thompson, MD, MPH, of the Ann
and Robert H. Lurie Children’s Hospital
of Chicago. “Given recent advances in
research and treatment, there is enormous
opportunity to transform the way we
care for people suffering from SCD and
conquer this disease.”
The Coalition will provide a platform to
encourage stakeholders to work together to
develop and implement important projects
and activities that will ultimately help the
SCD community and improve outcomes
for individuals with the disease. Some
examples of these projects include:
• The American College of Emergency
Physicians is supporting the Emergency Department Sickle Cell Care
Coalition, a collaborative group that
8
ASH Clinical News
ASH President Dr. Charles Abrams addresses the audience during the September 6 press conference.
is dedicated to the improvement of
the emergency care of individuals
with SCD in the United States.
• The Food and Drug Administration recently launched a campaign
to encourage minorities to participate in clinical trials for all medical
conditions. The initial focus of the
campaign is a series of videos to help
the SCD community become “Clinical Trial Champions.”
• The Sickle Cell Disease Association
of American continues to work with
stakeholder groups as they further
implement Get Connected, a patientpowered registry program, as well as
develop many new initiatives such as
programs to expand the use of community health workers in SCD care
and increase patient engagement in
clinical trials.
• This past spring, the Centers for Disease Control and the Association of
Public Health Laboratories released
a guidance document on Hemoglobinopathy Laboratory Testing and
Follow-up Techniques, which aims
to strengthen newborn screening
and diagnostic testing capabilities
in the United States and around the
globe by offering examples of best
practices.
• The National Marrow Donor Program
was instrumental in influencing the
Centers for Medicare & Medicaid Services to modify the agency’s existing
National Coverage Determinations
Manual to expand national coverage
for allogeneic hematopoietic stem cell
transplantation for three hematologic
conditions, including SCD.
To date, 31 organizations have joined the
Sickle Cell Disease Coalition. ASH is asking these organizations to pledge to take
on activities or programs that will move
the needle on SCD. Advocacy organizations, government agencies, companies,
policymakers, and foundations can send
an email to coordinator@scdcoalition.
org to share how they plan to help ASH
transform SCD.
Read the full report, stay up to date
with coalition activities, and view a comprehensive list of coalition members at
scdcoalition.org.
More About the Four
Priority Areas
Access to Care: Developing evidence-based
guidelines and coordinated health-care
delivery models to ensure that individuals
with SCD can access quality care regardless
of age, location, and socioeconomic status
Training and Education: Increasing the
number of providers who are able to care
for those with SCD by educating established clinicians to treat symptoms and
complications while encouraging medical
trainees to pursue careers in SCD care
Research and Clinical Trials: Investing
in strategies to expand use of existing
treatments, developing novel therapies,
and strengthening curative options while
accelerating their discovery
Global Issues: Expanding newborn screening and early intervention programs,
increasing SCD awareness and education,
and improving access to quality care in
developing regions
October 2016