[Congressional Record Volume 164, Number 34 (Monday, February 26, 2018)]
[House]
[Pages H1240-H1243]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SICKLE CELL DISEASE RESEARCH, SURVEILLANCE, PREVENTION, AND TREATMENT
ACT OF 2017
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 2410) to amend the Public Health Service Act to reauthorize
a sickle cell disease prevention and treatment demonstration program
and to provide for sickle cell disease research, surveillance,
prevention, and treatment.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 2410
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Sickle
Cell Disease Research, Surveillance, Prevention, and
Treatment Act of 2017''.
(b) Table of Contents.--The table of contents of this Act
is as follows:
Sec. 1. Short title; table of contents.
Sec. 2. Sickle cell disease research.
Sec. 3. Sickle cell disease surveillance.
Sec. 4. Sickle cell disease prevention and treatment.
Sec. 5. Collaboration with community-based entities.
SEC. 2. SICKLE CELL DISEASE RESEARCH.
Part P of title III of the Public Health Service Act is
amended by inserting after section 399V-6 (42 U.S.C. 280g-17)
the following:
``SEC. 399V-7. NATIONAL SICKLE CELL DISEASE RESEARCH,
SURVEILLANCE, PREVENTION, AND TREATMENT
PROGRAM.
``(a) Research.--The Secretary may conduct or support
research to expand the understanding of the cause of, and to
find a cure for, sickle cell disease.''.
SEC. 3. SICKLE CELL DISEASE SURVEILLANCE.
Section 399V-7 of the Public Health Service Act, as added
by section 2, is amended by adding at the end the following:
``(b) Surveillance.--
``(1) Grants.--The Secretary may, for each fiscal year for
which appropriations are available to carry out this
subsection, make grants to not more than 20 States--
``(A) to conduct surveillance and maintain data on the
prevalence and distribution of sickle cell disease and its
associated health outcomes, complications, and treatments;
``(B) to conduct public health initiatives with respect to
sickle cell disease, including--
``(i) increasing efforts to improve access to, and receipt
of, high-quality sickle cell disease-related health care,
including the use of treatments approved under section 505 of
the Federal Food, Drug, and Cosmetic Act or licensed under
section 351 of this Act;
[[Page H1241]]
``(ii) working with partners to improve health outcomes of
people with sickle cell disease over the lifespan by
promoting guidelines for sickle cell disease screening,
prevention, and treatment, including management of sickle
cell disease complications;
``(iii) providing support to community-based organizations
and State and local health departments in conducting sickle
cell disease education and training activities for patients,
communities, and health care providers; and
``(iv) supporting and training State health departments and
regional laboratories in comprehensive testing to identify
specific forms of sickle cell disease in people of all ages;
and
``(C) to identify and evaluate promising strategies for
prevention and treatment of sickle cell disease
complications, including through--
``(i) improving estimates of the national incidence and
prevalence of sickle cell disease, including estimates about
the specific types of sickle cell disease;
``(ii) identifying health disparities related to sickle
cell disease;
``(iii) assessing the utilization of therapies and
strategies to prevent complications related to sickle cell
disease; and
``(iv) evaluating the impact of genetic, environmental,
behavioral, and other risk factors that may affect sickle
cell disease health outcomes.
``(2) Population included.--The Secretary shall, to the
extent practicable, award grants under this subsection to
States across the United States so as to include data on the
majority of the United States population with sickle cell
disease.
``(3) Application.--To seek a grant under this subsection,
a State shall submit an application to the Secretary at such
time, in such manner, and containing such information as the
Secretary may require.
``(4) Definitions.--In this subsection:
``(A) The term `Secretary' means the Secretary of Health
and Human Services, acting through the Director of the
National Center on Birth Defects and Developmental
Disabilities.
``(B) The term `State' includes the 50 States, the District
of Columbia, the Commonwealth of Puerto Rico, the United
States Virgin Islands, the Commonwealth of the Northern
Mariana Islands, American Samoa, Guam, the Federated States
of Micronesia, the Republic of the Marshall Islands, and the
Republic of Palau.''.
SEC. 4. SICKLE CELL DISEASE PREVENTION AND TREATMENT.
(a) Reauthorization.--Section 712(c) of the American Jobs
Creation Act of 2004 (Public Law 108-357; 42 U.S.C. 300b-1
note) is amended--
(1) by striking ``Sickle Cell Disease'' each place it
appears and inserting ``sickle cell disease'';
(2) in paragraph (1)(A), by striking ``grants to up to 40
eligible entities for each fiscal year in which the program
is conducted under this section for the purpose of developing
and establishing systemic mechanisms to improve the
prevention and treatment of Sickle Cell Disease'' and
inserting ``grants to up to 25 eligible entities for each
fiscal year in which the program is conducted under this
section for the purpose of developing and establishing
systemic mechanisms to improve the prevention and treatment
of sickle cell disease in populations with a high density of
sickle cell disease patients'';
(3) in paragraph (1)(B)--
(A) by striking clause (ii) (relating to priority); and
(B) by striking ``Grant award requirements'' and all that
follows through ``The Administrator shall'' and inserting
``Geographic diversity.--The Administrator shall'';
(4) in paragraph (2), by adding the following new
subparagraph at the end:
``(E) To expand, coordinate, and implement transition
services for adolescents with sickle cell disease making the
transition to adult health care.''; and
(5) in paragraph (6), by striking ``$10,000,000 for each of
fiscal years 2005 through 2009'' and inserting ``$4,455,000
for each of fiscal years 2018 through 2022''.
(b) Technical Changes.--Subsection (c) of section 712 of
the American Jobs Creation Act of 2004 (Public Law 108-357;
42 U.S.C. 300b-1 note), as amended by subsection (a), is--
(1) transferred to the Public Health Service Act (42 U.S.C.
201 et seq.); and
(2) inserted at the end of section 399V-7 of such Act, as
added and amended by sections 2 and 3 of this Act.
SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTITIES.
Section 399V-7 of the Public Health Service Act, as amended
by section 4, is further amended by adding at the end the
following:
``(d) Collaboration With Community-Based Entities.--To be
eligible to receive a grant or other assistance under
subsection (b) or (c), an entity must have in effect a
collaborative agreement with a community-based organization
with 5 or more years of experience in providing services to
sickle cell disease patients.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Texas (Mr. Burgess) and the gentleman from Texas (Mr. Gene Green) each
will control 20 minutes.
The Chair recognizes the gentleman from Texas (Mr. Burgess).
General Leave
Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members
have 5 legislative days to revise and extend their remarks and insert
extraneous material into the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Texas?
There was no objection.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise today in strong support of H.R. 2410, the Sickle
Cell Disease Research, Surveillance, Prevention, and Treatment Act of
2017, introduced by the gentleman from Illinois (Mr. Danny K. Davis).
This reauthorizes the sickle cell disease prevention and treatment
demonstration program.
Sickle cell disease causes blockages of small vessels leading to
various health complications. By improving research, surveillance,
prevention, and treatment, along with enhancing collaboration with
community-based entities focussing on sickle cell disease, this
important legislation will help improve outcomes in patients suffering
from this inherited blood disorder, which currently affects 1 in 500
African-American births.
Mr. Speaker, I reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield myself such time as I
may consume.
Mr. Speaker, I rise in support of H.R. 2410, the Sickle Cell Disease
Research, Surveillance, Prevention, and Treatment Act, introduced by
the gentleman from Illinois (Mr. Danny K. Davis) and Energy and
Commerce Health Subcommittee Chairman Burgess.
Sickle cell disease is a group of inherited red blood cell disorders
where red blood cells become hard and sticky and have a C shape. When
these sickle cells travel through the blood vessels, they can get stuck
and clog the blood flow. When this occurs, it often causes extreme pain
and other serious health problems, including infections, lung-related
complications, and stroke.
100,000 Americans are living with sickle cell disease today. These
individuals need comprehensive treatment throughout their lives in
order to manage their symptoms and prevent their disease from
worsening, which requires a robust network of providers available to
treat sickle cell patients at every stage of life.
H.R. 2410 would reauthorize the Sickle Cell Disease Treatment
Demonstration Program, allowing the Department of Health and Human
Services to invest critical resources in research, surveillance, and
public health initiatives for sickle cell disease. These investments
will help bolster the sickle cell workforce and improve treatments for
sickle cell patients of all ages.
I urge my colleagues to support this important legislation, and I
reserve the balance of my time.
Mr. BURGESS. Mr. Speaker, I reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield 4 minutes to the
gentleman from Illinois (Mr. Danny K. Davis), the sponsor of this bill.
Mr. DANNY K. DAVIS of Illinois. Mr. Speaker, let me just, first of
all, commend Representative Burgess, chairman of the subcommittee, and
Mr. Green, as well as Representative Butterfield and all of the members
of the Energy and Commerce Committee, for their leadership in bringing
this bill to this point at this moment.
As we just heard, sickle cell disease is an inherited blood disorder
characterized by affected red blood cells that mutate into the shape of
a crescent or sickle, and, as such, these cells are unable to pass
through small blood vessels. It is a recessive genetic condition that
occurs when a child inherits two sickle cell genes or traits from each
parent.
The consequences and complications of this disease are extreme. The
Sickle Cell Disease Association of America, with whom we have worked
for many years, has studied and reported that common complications with
this disease include early childhood death from infection; stroke in
young children and adults; lung problems similar to pneumonia; chronic
damage to organs, including the kidney, leading to kidney failure, and
to the lungs, causing pulmonary hypertension; and severe painful
episodes.
[[Page H1242]]
In fact, pain episodes are a hallmark of sickle cell disease. They
are unpredictable in many ways, both the timing of when they occur--how
severe they will be--and how long they will last. For those with the
disease, these devastating pain episodes can start as early as 6 months
of age and can span a lifetime, impacting school attendance and
participation in the workforce. In fact, these pain crises contribute
significantly to the 200,000 emergency room visits collectively made by
sufferers of sickle cell disease each year in our country. A typical
crisis will result in a hospital stay of 7 to 10 days.
Mr. Speaker, we have made a tremendous amount of progress in the
treatment, research, and effective ways of dealing with this disease. I
note that more than 20 years ago I worked with the project at the
University of Illinois running a sickle cell education project, and I
have seen much of that progress that we have talked about, but we still
have a long way to go. There is still tremendous need for research.
There is need for additional treatment modalities.
So, again, I thank all of those who have demonstrated support for
this important legislation. I urge its passage.
Mr. BURGESS. Mr. Speaker, I reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield 4 minutes to the
gentleman from North Carolina (Mr. Butterfield), our colleague on the
committee whom I call ``Judge,'' just like I do you, because you are
both former district judges.
Mr. BUTTERFIELD. Mr. Speaker, I rise today in support of H.R. 2410,
the Sickle Cell Disease Research, Surveillance, Prevention, and
Treatment Act.
I want to commend my friends Representative Danny Davis and
Representative Dr. Michael Burgess for their tireless work in this
space. Both of these men have a lifetime of service in the delivery of
healthcare, the gentleman from Illinois (Mr. Danny K. Davis) and the
gentleman from Texas (Mr. Burgess). I thank both of them for their
incredible work.
I have been a lifetime advocate, Mr. Speaker, for addressing sickle
cell disease, and I am proud to cosponsor this bill. I have done so in
previous Congresses.
Sickle cell disease is the most common genetic blood disorder. It
affects approximately 100,000 individuals, primarily African Americans,
throughout the country.
Sickle cell disease awareness is significant to me for many reasons.
One, because this disorder affects many of my constituents in North
Carolina. It is significant, Mr. Speaker, because I had a dear cousin,
whose name was Rubie Butterfield Mizell, who, in 1972, passed away from
this disease in Opa-locka, Florida.
People with sickle cell disease have red blood cells with abnormal
types of hemoglobin, often causing anemia, jaundice, and the formation
of gallstones.
What is truly frightening is that sickle cell disease does not have a
cure. The most widely used treatment for sickle cell disease was modern
medicine 20 years ago that can reduce the number of episodes but does
not eliminate them or their severity.
The health challenges facing people with sickle cell disease are
enormous. The disease is widespread. The consequences can be dire, and
that is why the Congressional Black Caucus and the Health Brain Trust
of the Congressional Black Caucus have made these a priority in our
agenda over the years under the leadership of the gentlewoman from
Chicago, Illinois (Ms. Kelly).
{time} 1745
People with sickle cell disease have a much shorter life expectancy,
with median ages of death for males of only 33 years and for females of
only 36 years. These patients are also more likely to have additional
health complications, including stroke, blood clots, loss of vision,
and lung and kidney failure.
There are approximately 4,400 people with sickle cell disease in
North Carolina. I am sure that, Mr. Speaker, in the State of Texas, it
may be even more. My hope is that someday there will be none.
That is why we must reauthorize the Sickle Cell Disease Treatment
Demonstration Program to enable the Secretary of HHS to support
research to increase our understanding of the disease, and create a
grant program to study the prevalence of sickle cell and identify ways
to prevent and treat sickle cell disease effectively.
Sixty-five percent of individuals with this disease in North Carolina
have at least one emergency room visit per year. That is no way to
live. I am sure Dr. Burgess, when he practiced medicine in his home
State, saw many, many patients who were similarly situated.
We should do all that we can to help improve patients' lives, advance
treatment, and find a cure. I am grateful for the opportunity to move
this bill through the House, and I hope that my colleagues will join me
in supporting it.
I thank Dr. Burgess, Mr. Davis, and Mr. Green for their work. All of
these gentlemen have done a great job in this space.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield back the balance of my
time.
Mr. BURGESS. Mr. Speaker, I yield myself the balance of my time.
Mr. Speaker, I was surprised to learn at the legislative hearing that
we had on this bill--and it has been now several months ago--that there
had not been a new FDA-approved treatment for sickle cell in 40 year's
time. Now, my understanding is that may have changed recently, but that
is way too long. We do need to improve research, surveillance,
prevention, and treatment, and really take care of those patients who
are suffering with this disease.
Mr. Speaker, this is a good bill, and I thank Mr. Davis for bringing
it to our attention.
Mr. Speaker, I urge passage of the bill, and I yield back the balance
of my time.
Ms. JACKSON LEE. Mr. Speaker, I rise in support to H.R. 2410, the
``Sickle Cell Disease Research, Surveillance, Prevention, and Treatment
Act of 2017.''
I support this bipartisan legislation because it will improve the way
states study and monitor sickle cell disease.
This bill amends the Public Health Service Act to require the
Department of Health and Human Services to make grants to states to:
Collect data on the prevalence and distribution of sickle cell
disease;
Conduct sickle cell disease public health initiatives to improve
access to care and health outcomes; and
Identify and evaluate strategies for prevention and treatment of
sickle cell disease complications.
Mr. Speaker, it is estimated that:
Sickle cell disease affects 90,000 to 100,000; Americans;
Sickle cell disease occurs among about 1 out of every 500 Black or
African-American births;
Sickle cell disease occurs among about 1 out of every 36,000
Hispanic-American births;
Sickle Cell Trait occurs among about 1 in 12 Blacks or African
Americans.
If one parent has sickle cell 4 anemia and the other has sickle cell
trait, there is a 50 percent chance (or 1 out of 2) of having a baby
with either sickle cell disease or sickle cell trait with each
pregnancy.
It is critical that infants with Sickle Cell are identified early.
Sickle cell-related deaths among African-American children younger
than 4 years of age fell by 42 percent from 1999 through 2002.
This drop coincided with the introduction in 2000 of a vaccine that
protects against invasive pneumococcal disease.
Many racial health disparities stem from lack of access to quality
healthcare and proper health awareness.
Certain medical illnesses are known to be more prevalent in certain
demographic groups, including type II diabetes, lupus, sickle cell
anemia, and Triple Negative Breast Cancer for which African Americans
are more than twice as likely to be diagnosed on average.
As a Member of Congress, I have been a staunch advocate for my
constituents to find a cure for sickle cell disease.
Mr. Speaker, this bipartisan legislation will prepare states to
combat sickle cell disease in the 21st century, while helping provide
access to healthcare for Americans.
I urge all of my colleagues to join me in supporting the passage of
H.R. 2410.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Texas (Mr. Burgess) that the House suspend the rules and
pass the bill, H.R. 2410.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill was passed.
[[Page H1243]]
A motion to reconsider was laid on the table.
____________________