Latest on 21st CCA

Latest on the 21st Century Cures Act is the site to go to to watch the proceedings around 1 pm ET. Check schedule for updated times as they frequently change.  The vote is expected at 5pm.

Here is the exact language concerning Lyme in today’s pending House action:


(a) In General.—The Secretary of Health and Human Services (referred to in this section as “the Secretary”) may continue to conduct or support epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
(b) Reports.—The Secretary shall ensure that each triennial report under section 403 of the Public Health Service Act (42 U.S.C. 283) (as amended by section 2032) includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to tick-borne diseases.

(c) Tick-Borne Diseases Working Group.—

(1) ESTABLISHMENT.—The Secretary may establish a working group, to be known as the Tick-Borne Disease Working Group (referred to in this section as the “Working Group”), comprised of representatives of appropriate Federal agencies and other non-Federal entities, as appropriate, to provide expertise and to review all efforts within the Department of Health and Human Services related to tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
(2) RESPONSIBILITIES.—The working group shall—

(A) not later than 2 years after the date of enactment of this Act, develop or update a summary of—

(i) ongoing tick-borne disease research, including research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, and intervention for individuals with tick-borne diseases;
(ii) advances made pursuant to such research;
(iii) Federal activities related to tick-borne diseases, including—

(I) epidemiological activities related to tick-borne diseases; and
(II) basic, clinical, and translational tick-borne disease research related to the pathogenesis, prevention, diagnosis, and treatment of tick-borne diseases;
(iv) gaps in tick-borne disease research described in clause (iii)(II);
(v) the Working Group’s meetings required under paragraph (4); and
(vi) the comments received by the Working Group;
(B) make recommendations to the Secretary regarding any appropriate changes or improvements to such activities and research; and
(C) solicit input from States, localities, and nongovernmental entities, including organizations representing patients, health care providers, researchers, and industry regarding scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms.
(3) MEMBERSHIP.—The members of the working group shall represent a diversity of scientific disciplines.
(4) MEETINGS.—The Working Group shall meet not less than twice each year.
(5) REPORTING.—Not later than 2 years after the date of enactment of this Act, and every 2 years thereafter until termination of the Working Group pursuant to paragraph (6), the Working Group shall—

(A) submit a report on its activities under paragraph (2)(A) and any recommendations under paragraph (2)(B) to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions of the Senate; and
(B) make such report publicly available on the Internet website of the Department of Health and Human Services.
(6) SUNSET.—The Working Group under this section shall terminate 6 years after the date of enactment of this Act.