H.R.1222 - Congenital Heart Futures Reauthorization Act of 2017115th Congress (2017-2018) |
|Sponsor:||Rep. Bilirakis, Gus M. [R-FL-12] (Introduced 02/27/2017)|
|Committees:||House - Energy and Commerce | Senate - Health, Education, Labor, and Pensions|
|Committee Reports:||H. Rept. 115-329|
|Latest Action:||Senate - 12/13/2018 Message on Senate action sent to the House. (All Actions)|
|Roll Call Votes:||There has been 1 roll call vote|
This bill has the status Passed Senate
Here are the steps for Status of Legislation:
- Passed House
- Passed Senate
- To President
- Became Law
Text: H.R.1222 — 115th Congress (2017-2018)All Information (Except Text)
Text available as:
Engrossed Amendment Senate (12/12/2018)
In the Senate of the United States,
December 12, 2018.
Resolved, That the bill from the House of Representatives (H.R. 1222) entitled “An Act to amend the Public Health Service Act to coordinate Federal congenital heart disease research efforts and to improve public education and awareness of congenital heart disease, and for other purposes.”, do pass with the following
This Act may be cited as the “Congenital Heart Futures Reauthorization Act of 2017”.
Section 399V–2 of the Public Health Service Act (42 U.S.C. 280g–13) is amended to read as follows:
“(a) In general.—The Secretary shall, as appropriate—
“(1) enhance and expand research and data collection efforts related to congenital heart disease, including to study and track the epidemiology of congenital heart disease to understand health outcomes for individuals with congenital heart disease across all ages;
“(2) conduct activities to improve public awareness of, and education related to, congenital heart disease, including care of individuals with such disease; and
“(1) IN GENERAL.—The Secretary shall carry out activities, including, as appropriate, through a national cohort study and a nationally-representative, population-based surveillance system, to improve the understanding of the epidemiology of congenital heart disease in all age groups, with particular attention to—
“(D) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease; and
“(2) PERMISSIBLE CONSIDERATIONS.—In carrying out the activities under this section, the Secretary may, as appropriate—
“(A) collect data on the health outcomes, including behavioral and mental health outcomes, of a diverse population of individuals of all ages with congenital heart disease, such that analysis of the outcomes will inform evidence-based practices for individuals with congenital heart disease; and
“(c) Awareness campaign.—The Secretary may carry out awareness and educational activities related to congenital heart disease in individuals of all ages, which may include information for patients, family members, and health care providers, on topics such as the prevalence of such disease, the effect of such disease on individuals of all ages, and the importance of long-term, specialized care for individuals with such disease.
“(d) Public access.—The Secretary shall ensure that, subject to subsection (e), information collected under this section is made available, as appropriate, to the public, including researchers.
“(e) Patient privacy.—The Secretary shall ensure that the data and information collected under this section are made available in a manner that, at a minimum, protects personal privacy to the extent required by applicable Federal and State law.
“(f) Eligibility for grants.—To be eligible to receive a grant under subsection (a)(3), an entity shall—
“(1) be a public or private nonprofit entity with specialized experience in congenital heart disease; and
Not later than 3 years after the date of enactment of the Congenital Heart Futures Reauthorization Act of 2017, the Secretary of Health and Human Services shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report summarizing any activities carried out pursuant to section 399V–2 of the Public Health Service Act (as amended by section 2), including planned activities, and a summary of any research findings and ongoing research efforts, gaps, and areas of greatest need within the Department of Health and Human Services regarding congenital heart disease in patients of all ages.