[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.''.
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