[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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