[Congressional Record Volume 161, Number 165 (Thursday, November 5, 2015)]
[Senate]
[Pages S7816-S7817]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DURBIN (for himself and Mr. Casey):
  S. 2248. A bill 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; to the Committee on Health, Education, Labor, and Pensions.
  Mr. DURBIN. Mr President, every 15 minutes in America, a baby is born 
with a congenital heart defect. Many of these congenital heart defects 
are simple and can be easily corrected. Others are complex; some can 
require a lifetime of specialized medical care.
  If you want to know what fear and powerlessness feels like, imagine 
being a young parent, listening to a doctor tell you that your new 
baby--who appears so perfect to you--has a threatening heart problem.
  Fortunately, congenital heart defects aren't as deadly as they once 
were. In the 1950s, only 20 percent of American babies with congenital 
heart defects survived infancy. Today, 90 percent survive. Many 
children born with serious heart defects grow up to be adults with 
active, productive lives.
  That progress didn't happen by accident. It happened because 
Americans made a decision in the 1960s to reduce these mortality 
numbers. We invested in research that led to better understanding and 
better treatments of the heart, from infancy to old age.
  That investment in research has paid off in many ways. Some heart 
conditions that used to kill adults quickly often are managed now with 
medications and life style changes. The number of Americans with 
congenital heart disease living full, healthy lives increases by about 
5 percent every year. About 2 million Americans are living with 
congenital heart disease today. We have come a long way--but there is 
more that we can do.
  We know that the sooner a baby with a congenital heart defect is 
diagnosed and treated, the better the chances are to live a long and 
healthy life. But, the Centers for Disease Control and Prevention 
estimates that 30 percent of babies with critical congenital heart 
defects aren't diagnosed in the first few days, when treatment is most 
effective; 1 in 200 babies die from complications that might have been 
avoided if their heart disease had been detected.
  In 2009, I introduced the Congenital Heart Futures Act to study 
people of all ages with congenital heart disease and coordinate 
research. That bill expired this year.
  Today I am introducing the Congenital Heart Futures Reauthorization 
Act of 2015. This bill will save lives by allowing us to build on the 
knowledge we have gained about congenital heart defects and the best 
ways to treat them.
  My bill directs the Centers for Disease Control and Prevention to 
study

[[Page S7817]]

people of all ages with congenital heart disease. The CDC would make 
the results of its research available to congenital heart disease 
researchers and to Congress. We will enable some of the best scientific 
and medical minds in America to evaluate the best ways to diagnose and 
treat congenital heart disease.
  Many adults living with congenital heart disease are not aware they 
need specialized care throughout their lives. And fewer than 10 percent 
of adults with complex congenital heart disease receive the care they 
need.
  The Congenital Heart Futures Reauthorization Act directs the CDC to 
create a public awareness campaign to educate both patients and doctors 
about congenital heart disease and the need for lifelong specialized 
care for those living with congenital heart defects.
  Finally, my bill directs the National Institutes of Health to conduct 
a review of ongoing research on congenital heart disease, identify 
areas of greatest need for research, and identify plans for future 
research.
  We are not powerless when it comes to congenital heart challenges. We 
have made tremendous progress in my lifetime. Millions of Americans 
with congenital heart defects are living happy, healthy lives today 
because of that progress.
  The Congenital Heart Futures Reauthorization Act bill will help us 
better understand what congenital heart disease looks like in the 
United States and what we can do to help those living with this disease 
live longer. This bill will save lives and ultimately it will save 
taxpayers money--a lifetime of specialized heart care is expensive.
  I would like to thank Senator Casey for joining me in introducing 
this bill, and Representatives Bilirakis from Florida and Adam Schiff 
from California in the House for introducing the companion bill. I look 
forward to working with them on this issue that affects so many 
families.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the text of the bill was ordered to be 
printed in the Record, as follows:

                                S. 2248

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Congenital Heart Futures 
     Reauthorization Act of 2015''.

     SEC. 2. NATIONAL CONGENITAL HEART DISEASE COHORT STUDY AND 
                   AWARENESS CAMPAIGN.

       Section 301 of the Public Health Service Act (42 U.S.C. 
     241) is amended by adding at the end the following--
       ``(f) National Congenital Heart Disease Cohort Study.--
       ``(1) In general.--The Secretary, acting through the 
     Director of the Centers for Disease Control and Prevention, 
     shall plan, develop, implement, and submit annual reports to 
     the Congress on surveillance and research activities of the 
     Centers for Disease Control and Prevention, including a 
     cohort study to improve understanding of the epidemiology of 
     congenital heart disease (referred to in this subsection and 
     subsection (g) as `CHD') across the lifespan, from birth to 
     adulthood, with particular interest in the following:
       ``(A) Health care utilization and natural history of those 
     affected by CHD.
       ``(B) Demographic factors associated with CHD, such as age, 
     race, ethnicity, gender, and family history of individuals 
     who are diagnosed with the disease.
       ``(C) Outcome measures, such that analysis of the outcome 
     measures will allow derivation of evidence-based best 
     practices and guidelines for CHD patients.
       ``(2) Permissible considerations.--The study under this 
     subsection may--
       ``(A) gather data on the health outcomes of a diverse 
     population of those affected by CHD;
       ``(B) consider health disparities among those affected by 
     CHD which may include the consideration of prenatal 
     exposures; and
       ``(C) incorporate behavioral, emotional, and educational 
     outcomes of those affected by CHD.
       ``(3) Public access.--Subject to paragraph (4), the data 
     generated from the studies under this subsection shall be 
     made available to CHD researchers subject to appropriate 
     privacy protections, and aggregate data from such studies 
     shall be made available to the public.
       ``(4) Patient privacy.--The Secretary shall ensure that the 
     study under this subsection is carried out in a manner that 
     complies with the requirements applicable to a covered entity 
     under the regulations promulgated pursuant to section 264(c) 
     of the Health Insurance Portability and Accountability Act of 
     1996.
       ``(g) Congenital Heart Disease Awareness Campaign.--
       ``(1) In general.--The Secretary, acting through the 
     Director of the Centers for Disease Control and Prevention, 
     shall establish and implement an awareness, outreach, and 
     education campaign regarding CHD across the lifespan. The 
     information expressed through such campaign may--
       ``(A) emphasize that CHD is the most prevalent birth 
     defect;
       ``(B) identify CHD as a condition that affects those 
     diagnosed throughout their lives; and
       ``(C) promote the need for pediatric, adolescent, and adult 
     individuals with CHD to seek and maintain lifelong, 
     specialized care.
       ``(2) Permissible activities.--The campaign under this 
     subsection shall--
       ``(A) utilize collaborations or partnerships with other 
     agencies, health care professionals, and patient advocacy 
     organizations that specialize in the needs of individuals 
     with CHD; and
       ``(B) include the use of print, film, or electronic 
     materials distributed via television, radio, Internet, or 
     other commercial marketing venues.''.

     SEC. 3. CONGENITAL HEART DISEASE RESEARCH.

       Section 425 of the Public Health Service Act (42 U.S.C. 
     285b-8) is amended by adding the end the following:
       ``(d) Report From NIH.--Not later than 1 year after the 
     date of enactment of the Congenital Heart Futures 
     Reauthorization Act of 2015, the Director of NIH, acting 
     through the Director of the Institute, shall provide a report 
     to Congress--
       ``(1) outlining the ongoing research efforts of the 
     National Institutes of Health regarding congenital heart 
     disease; and
       ``(2) identifying--
       ``(A) future plans for research regarding congenital heart 
     disease; and
       ``(B) the areas of greatest need for such research.''.
                                 ______