[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.

                          ____________________