Mr. Chair, I have an amendment at the desk. Mr. Chair, I yield myself such time as I may consume. First of all, I want to thank Representative Burgess and Representative G.K. Butterfield, both of whom have been very helpful in putting this…
Mr. Chair, I have an amendment at the desk.
Mr. Chair, I yield myself such time as I may consume.
First of all, I want to thank Representative Burgess and Representative G.K. Butterfield, both of whom have been very helpful in putting this amendment together.
The Davis-Burgess-Butterfield bipartisan amendment would increase the funding to the account of the National Center on Birth Defects, Development Disabilities, and Disabilities by $2 million and decrease the administration account in the Office of the Secretary of Health and Human Services by $2 million.
Currently, under this account, there is no money allocated for the Public Health Approach to Blood Disorders Program for Sickle Cell Disease. Increasing funding would support the CDC's sickle cell disease surveillance program to better identify affected individuals, to understand their health outcomes, and to evaluate strategies to prevent complications and risk factors that affect individuals living with this devastating disease.
The $2 million funding for the Davis-Burgess-Butterfield amendment would assist in establishing a grant program for States representing a majority of the sickle cell disease patient population. The current surveillance conducted by the CDC is limited to the States of California and Georgia.
The data accumulated under this grant program, authorized by Public Law 115-327, would cover associated health outcomes, would identify health disparities, and would evaluate the impact of genetic, environmental, behavioral, and other risk factors that may impact health.
Mr. Chair, I reserve the balance of my time.
Mr. Chairman, I include in the Record this letter of support from the American Society of Hematology and the Sickle Cell Disease Association of America.
American Society of Hematology and the Sickle Cell
Disease Association of America, Inc.
June 12, 2019.
Hon. Danny Davis,
House of Representatives,
Washington, DC.
Hon. Michael Burgess,
House of Representatives,
Washington, DC.
Hon. G.K. Butterfield,
House of Representatives,
Washington, DC.
Dear Representatives Davis, Burgess, and Butterfield: The
American Society of Hematology (ASH) and the Sickle Cell
Disease Association of America (SCDAA) strongly support your
amendment to provide $2 million in funding for the sickle
cell disease (SCD) data collection program authorized by the
Sickle Cell Disease Research, Surveillance, Prevention, and
Treatment Act of 2018 (Public Law 115-327). Your amendment
will enable the CDC to expand its efforts to improve SCD
surveillance in the United States.
The Davis/Burgess/Butterfield amendment will add $2 M in
funding to the National Center for Birth Defects and
Developmental Disabilities, Public Health Approach to Blood
Disorders account. This program currently oversees SCD public
health surveillance in the states of California and Georgia
and has recently released a grant announcement for additional
states to take the necessary steps to engage in SCD data
collection. The amendment will enable additional high
incidence states to undertake SCD surveillance.
The CDC estimates that SCD affects nearly 100,000
Americans; however, absent a nationwide surveillance program,
we are not confident of this estimate, nor do we know where
individuals with SCD live, how they receive care or if they
have access to healthcare providers with expertise in SCD.
Surveillance is necessary to improve understanding of the
health outcomes and health care system utilization patterns
of people with SCD, increase evidence for public health
programs, and establish cost effective practices to improve
and extend the lives of people with SCD.
SCD is an inherited, lifelong disorder that causes a
person's red blood cells to become deformed and get stuck in
veins, blocking oxygen flow throughout the body. This
devastating disease can cause complications including severe
pain, stroke, acute chest syndrome, organ damage, and in some
cases premature death. The many complications of SCD can make
every stage of life extremely challenging for individuals
with the disease. This is compounded by the fact that many
people living with SCD are unable to access quality care and
are limited by a lack of effective treatment options.
ASH represents more than 17,000 physicians, researchers,
and medical trainees committed to the study and treatment of
blood and blood-related diseases and disorders, including
SCD. SCDAA's mission is to advocate for people affected by
sickle cell conditions and empower community-based
organizations to maximize quality of life and raise public
consciousness while advancing the search for a universal
cure.
Thank you again for your leadership to improve ``the lives
of individuals living with SCD. Expansion of CDC's work in
SCD will significantly help improve our understanding of the
disorder and in turn, improve healthcare outcomes for
individuals with SCD.
Sincerely,
Roy L. Silverstein, MD,
ASH President.
Beverly Francis-Gibson, M.A,
SCDAA President and Chief Executive Officer.
Mr. Chair, I yield such time as she may consume to the gentlewoman from Connecticut (Ms. DeLauro).
Mr. Chairman, I simply want to commend and thank, again, Dr. Burgess for not only his passion, but the tremendous work and effort that he has put forth over the years to help make sure that this population group gets the service and attention that they deserve.
Mr. Chair, I thank Representative DeLauro for her comments, especially the fact that many researchers believe that they are very close to finding a cure for sickle cell anemia, and this just moves us one step further.
Mr. Chair, I urge adoption, and I yield back the balance of my time.