[Congressional Record Volume 164, Number 169 (Thursday, October 11, 2018)]
[Senate]
[Page S6880]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 SICKLE CELL DISEASE RESEARCH, SURVEILLANCE, PREVENTION, AND TREATMENT 
                              ACT OF 2018

  Mr. McCONNELL. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of Calendar No. 553, S. 2465.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The legislative clerk read as follows:

       A 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 PRESIDING OFFICER. Is there objection to proceeding to the 
measure?
  Without objection, the Senate proceeded to consider the bill, which 
had been reported from the Committee on Health, Education, Labor, and 
Pensions, with an amendment to strike all after the enacting clause and 
insert in lieu thereof the following:

     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 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.
  Mr. McCONNELL. I ask unanimous consent that the committee-reported 
substitute be agreed to and that the bill, as amended, be considered 
read a third time.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The committee-reported amendment in the nature of a substitute was 
agreed to.
  The bill was ordered to be engrossed for a third reading and was read 
the third time.
  Mr. McCONNELL. I know of no further debate on the bill, as amended.
  The PRESIDING OFFICER. Is there further debate?
  If not, the bill having been read the third time, the question is, 
Shall the bill pass?
  The bill (S. 2465), as amended, was passed.
  Mr. McCONNELL. I ask unanimous consent that the motion to reconsider 
be considered made and laid upon the table.
  The PRESIDING OFFICER. Without objection, it is so ordered.

                          ____________________