S. 2465 — what changed

added This Act may be cited as the “Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018”.

changed It is the Sense Part A of the Senate that further research should be undertaken to expand the understanding title XI of the cause of, and to find a cure for, sickle cell disease.Public Health Service Act is amended by inserting after section 1105 (42 U.S.C. 300b–4) the following:

added “1106. Sickle cell disease and other heritable blood disorders research, surveillance, prevention, and treatment

added “(a) Grants

added “(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:

added “(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—

added “(i) improving national incidence and prevalence data;

added “(ii) identifying health disparities, including the geographic distribution, related to such diseases and conditions;

added “(iii) assessing the utilization of therapies and strategies to prevent complications; and

added “(iv) evaluating the effects of genetic, environmental, behavioral, and other risk factors that may affect such individuals.

added “(B) To conduct public health activities with respect to such conditions, which may include—

added “(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;

added “(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;

added “(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

added “(iv) the identification and evaluation of best practices for treatment of such diseases and conditions, and prevention and management of their related complications.

added “(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.

added “(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.

added “(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.

added “(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.”

added “(E) To provide or coordinate services for adolescents with sickle cell disease making the transition to adult health care.”

removed 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:

removed “399V–7. National Sickle Cell Disease Surveillance, Prevention, and Treatment Program

removed “(a) Surveillance

removed “(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 eligible entities for the following purposes:

removed “(A) To conduct surveillance and maintain data on the prevalence and distribution of sickle cell disease and its associated health outcomes, complications, and treatments.

removed “(B) To conduct public health initiatives with respect to sickle cell disease, including one or more of the following:

removed “(i) Increasing efforts to improve access to 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.

removed “(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.

removed “(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.

removed “(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.

removed “(C) To identify and evaluate promising strategies for prevention and treatment of sickle cell disease complications, including through one or more of the following:

removed “(i) Improving estimates of the national incidence and prevalence of sickle cell disease, including estimates about the specific types of sickle cell disease.

removed “(ii) Identifying health disparities related to sickle cell disease.

removed “(iii) Assessing the utilization of therapies and strategies to prevent complications related to sickle cell disease.

removed “(iv) Evaluating the impact of genetic, environmental, behavioral, and other risk factors that may affect sickle cell disease health outcomes.

removed “(2) Population included—The Secretary shall, to the extent practicable, award grants under this subsection to eligible entities across the United States so as to include data on the majority of the United States population with sickle cell disease.

removed “(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.

removed “(4) 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, a State health or public health department, an institution of higher education, or a nonprofit entity.”

added 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.

removed “(E) To expand, coordinate, and implement transition services for adolescents with sickle cell disease making the transition to adult health care.”