[Congressional Record Volume 164, Number 195 (Tuesday, December 11, 2018)]
[House]
[Pages H10052-H10054]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD DISORDERS RESEARCH,
SURVEILLANCE, PREVENTION, AND TREATMENT ACT OF 2018
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill (S. 2465) 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:
S. 2465
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Sickle Cell Disease and
Other Heritable Blood Disorders Research, Surveillance,
Prevention, and Treatment Act of 2018''.
SEC. 2. DATA COLLECTION ON CERTAIN BLOOD DISORDERS.
Part A of title XI of the Public Health Service Act is
amended by inserting after section 1105 (42 U.S.C. 300b-4)
the following:
``SEC. 1106. SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD
DISORDERS RESEARCH, SURVEILLANCE, PREVENTION,
AND TREATMENT.
``(a) Grants.--
``(1) In general.--The Secretary may award grants related
to heritable blood disorders, including sickle cell disease,
for one or more of the following purposes:
``(A) To collect and maintain data on such diseases and
conditions, including subtypes as applicable, and their
associated health outcomes and complications, including for
the purpose of--
``(i) improving national incidence and prevalence data;
``(ii) identifying health disparities, including the
geographic distribution, related to such diseases and
conditions;
``(iii) assessing the utilization of therapies and
strategies to prevent complications; and
``(iv) evaluating the effects of genetic, environmental,
behavioral, and other risk factors that may affect such
individuals.
``(B) To conduct public health activities with respect to
such conditions, which may include--
``(i) developing strategies to improve health outcomes and
access to quality health care for the screening for, and
treatment and management of, such diseases and conditions,
including through public-private partnerships;
``(ii) providing support to community-based organizations
and State and local health departments in conducting
education and training activities for patients, communities,
and health care providers concerning such diseases and
conditions;
``(iii) supporting State health departments and regional
laboratories, including through training, in testing to
identify such diseases and conditions, including specific
forms of sickle cell disease, in individuals of all ages; and
``(iv) the identification and evaluation of best practices
for treatment of such diseases and conditions, and prevention
and management of their related complications.
``(2) Population included.--The Secretary shall, to the
extent practicable, award grants
[[Page H10053]]
under this subsection to eligible entities across the United
States to improve data on the incidence and prevalence of
heritable blood disorders, including sickle cell disease, and
the geographic distribution of such diseases and conditions.
``(3) Application.--To seek a grant under this subsection,
an eligible entity shall submit an application to the
Secretary at such time, in such manner, and containing such
information as the Secretary may require.
``(4) Priority.--In awarding grants under this subsection,
the Secretary may give priority, as appropriate, to eligible
entities that have a relationship with a community-based
organization that has experience in, or is capable of,
providing services to individuals with heritable blood
disorders, including sickle cell disease.
``(5) Eligible entity.--In this subsection, the term
`eligible entity' 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 Marshall Islands, the Republic of
Palau, Indian tribes, a State or local health department, an
institution of higher education, or a nonprofit entity with
appropriate experience to conduct the activities under this
subsection.''.
SEC. 3. 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 ``shall conduct a
demonstration program by making 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 ``shall continue efforts, including by awarding
grants, to develop or establish mechanisms to improve the
treatment of sickle cell disease, and to improve the
prevention and treatment of complications of sickle cell
disease, in populations with a high proportion of individuals
with sickle cell disease'';
(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 provide or coordinate 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 2019 through 2023''.
(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.);
(2) redesignated as subsection (b); and
(3) inserted at the end of section 1106 of such Act, as
added by section 2 of this Act.
SEC. 4. SENSE OF THE SENATE.
It is the Sense of the Senate that further research should
be undertaken to expand the understanding of the causes of,
and to find cures for, heritable blood disorders, including
sickle cell disease.
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
may have 5 legislative days in which to revise and extend their remarks
and insert extraneous materials in 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 to speak in support of S. 2465, the Sickle Cell
Disease and Other Heritable Blood Disorders Research, Surveillance,
Prevention, and Treatment Act of 2018.
The policy included in this legislation is something on which
Congress has been working towards for years, as improvements for
individuals with sickle cell have largely remained stagnant.
This text is similar to H.R. 2410, which was introduced by
Representative Danny Davis and myself and passed this Chamber
unanimously in February.
Mr. Speaker, I would like to thank Representative Davis, in addition
to Senator Tim Scott and Senator Cory Booker for working with me on
this important policy.
Since the passage of the Sickle Cell Anemia Control Act of 1972, the
first law to address sickle cell, individuals living with this disease
have seen a substantial drop in mortality rates; however, there remains
work to be done.
According to the Centers for Disease Control and Prevention, there
are approximately 100,000 individuals in the United States with sickle
cell. Additionally, the disease occurs in 1 in 365 African American
births, and in 1 in 13 African American births, the newborn has the
sickle cell trait.
In the 1990s, the Food and Drug Administration approved hydroxyurea,
which stimulates the body to resume production of fetal hemoglobin to
treat sickle cell disease.
Last year the Food and Drug Administration approved Endari, which was
the first new approved treatment in over 20 years.
I met with Dr. Janet Woodcock and Dr. Peter Marks to learn more about
why the approvals have taken such a long time.
This bill would further our commitment to helping those with sickle
cell by both continuing the Health Resources and Service
Administration's Sickle Cell Disease Prevention and Treatment
Demonstration Program and by allowing the Centers for Disease Control
and Prevention to conduct surveillance of the disease and other
heritable blood disorders.
The CDC's surveillance activity will allow for identification of
health disparities, analysis of utilization of existing therapies, and
evaluation of genetic, environmental, behavioral, and other risk
factors.
Having worked with patients with sickle cell disease while at
Parkland Hospital, I have seen firsthand the real consequences that
this disease can have on people.
This bill provides an important step forward in ensuring that we have
the resources to better understand this illness and maintain access for
services for those affected by the disease.
While sickle cell disease has been addressed in bills like the 21st
Century Cures Act, among other rare diseases, it has been a long time
since this illness was substantially addressed in legislation.
The future of sickle cell disease treatment is bright if we pass this
legislation and send it to President Trump. Better understanding of the
landscape of sickle cell disease across the Nation and investing in new
research for new treatments holds much promise for individuals and
families who spend every day managing their disease.
Think of the children who have been unable to play or had to quit
competing, or who have had to struggle through school because they are
frequently absent due to the complications or pain from their
underlying sickle cell illness.
The support this bill provides will enable public-private
partnerships to take the reins to fight this disease head-on in
communities across the country.
Mr. Speaker, I urge Members to support this legislation so we can
send it promptly to the President's desk.
Mr. Speaker, I reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield myself as much time as
I may consume.
Mr. Speaker, I rise in support of S. 2465, the Sickle Cell Disease
and Other Heritable Blood Disorders Research, Surveillance, Prevention,
and Treatment Act.
This legislation will reauthorize the Sickle Cell Disease Treatment
Demonstration Program at HRSA. This program enhances the prevention and
treatment of sickle cell through coordination of service delivery,
genetic counseling, testing, training of health professionals, and
other related efforts.
The program is particularly important since individuals with sickle
cell disease need comprehensive treatment throughout their lives in
order to manage their symptoms and prevent their disease from
worsening.
Over 100,000 Americans are living with sickle cell disease today.
Each will need access to robust network providers with the knowledge
and skills to treat this condition.
[[Page H10054]]
This is especially important now, for far too many individuals with
sickle cell are unable to get the care they need, particularly those
who present at emergency departments with intense pain associated with
a sickle cell crisis.
In addition to reauthorizing that program, this bill would expand the
activities related to sickle cell and other heritable blood disorders
by strengthening surveillance and other public health efforts as well
as encouraging more research into these health conditions.
Mr. Speaker, I would like to thank Representative Danny Davis,
Representative G.K. Butterfield, and Representative Burgess for their
leadership on this issue.
Mr. Speaker, I urge my colleagues to support S. 2465, which will
allow HHS to invest critical resources into research, surveillance, and
public health initiatives of sickle cell disease as well as other
heritable blood disorders. These investments will help bolster the
sickle cell workforce and improve treatments for sickle cell patients
of all ages.
Mr. Speaker, I reserve the balance of my time.
{time} 1330
Mr. BURGESS. Mr. Speaker, I yield 2 minutes to the gentleman from
Georgia (Mr. Carter).
Mr. CARTER of Georgia. Mr. Speaker, I thank the gentleman for
yielding.
Mr. Speaker, I rise today in support of S. 2465, the Sickle Cell
Disease and Other Heritable Blood Disorders Research, Surveillance,
Prevention, and Treatment Act.
This legislation, which has been sponsored by Senator Scott, makes
important updates to statute so as to better help our medical
professionals understand and treat sickle cell and other blood
disorders.
Sickle cell is a terrible disease, inflicting extremely difficult
effects on those who have this condition. Today's legislation will
allow us to move forward and combat this and other heritable blood
disorders so that we can provide a better quality of life to those who
suffer from them.
We are very fortunate to have some world-class treatment options in
my home State of Georgia at health systems like Emory University. They
are doing incredible work in treating and understanding this disease so
that we can improve the lives of all who suffer from these forms of
diseases.
This legislation supports State health departments, establishes best
practices, improves data collection efforts, and develops strategies
that will hopefully allow us to eventually fully address these
diseases.
Mr. Speaker, I thank my colleagues for their work on this, and I urge
them to support this legislation.
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.
I want to point out, Mr. Speaker, that this bill we are passing today
has already passed the Senate. While we did work on a similar bill well
over a year ago, this bill has passed the Senate. With our passage
today, this bill goes down the street to the White House for signature
to become law: the first major sickle cell bill to be enacted in quite
some time.
It is a banner day for this institution that we are providing this
help to citizens, fundamentally, on this very crucial problem that
affects so many of our fellow citizens.
Mr. Speaker, I urge all Members to vote in favor of this bill, and I
yield back the balance of my time.
Mr. BUTTERFIELD. Mr. Speaker, I rise today to express my support for
H.R. 2410, the Sickle Cell Disease Research, Surveillance, Prevention,
and Treatment Act of 2017, that passed the U.S. House of
Representatives on February 26, 2018. Today, the House of
Representatives passed S. 2465, which is the Senate-amended version of
H.R. 2410. As a co-sponsor of H.R. 2410 and the immediate past Chair of
the Congressional Black Caucus, I rise to clarify the Congressional
intent of this important legislation.
I commend my friends, Representative Danny Davis from Illinois and
Representative Michael Burgess from Texas, for introducing H.R. 2410. I
have been a longtime advocate for those with sickle cell disease and I
am a proud co-sponsor of the bill in this Congress and in previous
Congresses.
There are approximately forty-four hundred people with sickle cell
disease in my home state of North Carolina. My hope is that someday
there will be none. Sixty-five percent of individuals with sickle cell
disease in North Carolina have at least one emergency room visit per
year--that is no way to live. We should do all we can to help improve
patients' lives, advance treatment, and find a cure.
That is why we must reauthorize the Sickle Cell Disease Treatment
Demonstration Program to enable the Secretary of the Department of
Health and Human Services to support research that will increase our
understanding of sickle cell disease, and create a grant program to
study the prevalence of sickle cell and identify ways to prevent and
treat sickle cell disease effectively.
S. 2465 makes changes to the House-approved language that warrant
clarification Notably, Sec. 2 of S. 2465 enables the awarding of grants
related to heritable blood disorders, including sickle cell disease,
for the purposes of research, surveillance, prevention, and treatment.
It is imperative to stress that the intent of this language is to
require that those grants be awarded for sickle cell disease research,
surveillance, prevention, and treatment, at minimum. It is not the
intent of the language for grants to be awarded related to other
heritable blood disorders (e.g. hemophilia) instead of or in lieu of
sickle cell disease.
Finally, Sec. 3 of S. 2465, reauthorizing the Sickle Cell Disease
Treatment Demonstration Program, is intended to provide awards related
only to sickle cell disease. It is not the intent of the legislation to
allocate awards made under Sec. 3 for other heritable diseases.
Mr. Speaker, this legislation is intended to provide critical funding
to assist those with sickle cell disease, and any awards made under
Sec. 2 or Sec. 3 of this bill must be used for sickle cell disease
response.
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, S. 2465.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill was passed.
A motion to reconsider was laid on the table.
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