Initiatives Aimed at Improving Health Outcomes and

Reducing Disparities for the Youngest Patients

Washington DC (RPRN) 01/27/12 — The Newborn Coalition today announced its 2012 policy priorities addressing immediate advocacy objectives for leveraging technologies in support of newborn health at the local, state and federal level.

In 2011, the Newborn Coalition focused its efforts on the securing a federal recommendation from the U.S. Secretary of Health and Human Services that all newborns be screened for Critical Congenital Heart Disease (CCHD). Heart defects are the most common of all birth defects, impacting 1 of every 100 infants. The coalition provided key testimony, worked with 4 different federal agencies and provided briefings to more than 75 congressional offices. The recommendation has been endorsed by the American Academy of Pediatrics, the American Heart Association, and the American College of Cardiology.

In 2012, the coalition’s policy goals focus on implementing the Secretary’s recommendation, as well as fostering an environment where innovative and impactful technologies can be applied to increase access to pediatric cardiology services and specialty care while encouraging health IT enabled care coordination for newborns.

“Advocacy is a vital part of our mission, educating and collaborating with the public policy, public health, provider, parent, and legislative communities on key issues that impact the health and well-being of newborns and infants,” said Jim Bialick, Executive Director, Newborn Coalition. “The priorities help us stay on top of immediate needs and track progress in initiatives that address critical challenges in newborn health.”

The priorities are compiled with input from the coalition’s advisory board and expertise from the organization’s numerous partners in the medical, academic, research, and public policy communities. 2012 priorities include:

Federal Advocacy:

• Advocating for high-value policies, standards and legislative language that emphasize solutions for public health reporting of newborn-screened conditions in federal technology programs.

• Working with congressional members to protect and enhance funding for vital public health initiatives, including maternal and child health programs, newborn screenings (Newborn Screening Saves Lives Act), education, outreach, follow-up care, quality assurance and care coordination that improve outcomes and reduce disparities for infants.

• Continuing collaborating with HRSA and federal advisory committees on implementation of routine pulse oximetry screening for CCHD and additional critical newborn public health initiatives.

• Working directly with the Office of the National Coordinator (ONC) to accelerate Health IT standards development and provider adoption of technologies that impact newborn health and outcomes.

• Ongoing direct engagement with the provider, public health and vendor communities to support research, technologies, and programs that improve newborn access to quality care while reducing costs through the use of technologies.

• Reducing barriers to the development, market readiness and deployment of health technologies.

• Convening thought leaders and key decision makers on Capitol Hill and with the Administration to raise visibility and promote the use of technologies in newborn health.

State Advocacy:

• Working directly with states to tailor model-legislation that will create a solid foundation for CCHD screening and reporting, leveraging health IT as a key component of implementation.

• Working with state Departments of Health to assess existing technological capacity and help advocate for appropriate changes that will facilitate scalable results reporting and follow-up.

• Developing executing on health IT-centered pilot projects focused on the development and implementation of a newborn electronic health record; an open-source, online knowledge hub for newborn screening for heart defects; state-based vital statistics repositories; state-readiness implementation roadmaps; electronically integrated SSA newborn disability eligibility; and a newborn critical care and access mapping project.

The Newborn Coalition will also be working collaboratively with federal agencies, national associations and the private sector to initiate additional pilot and demonstration projects to support federal standards and projects aimed at increasing early detection of health conditions, improving care, and accelerating adoption of health technologies.

“Babies in the United States have a higher risk of dying during their first month of life than do babies born in 40 other countries,” said Mary Ellen Mannix, founder of James’s Project, national patient health and safety advocate, and Newborn Coalition Advisory Board member. “Over the past year, the coalition has facilitated an unprecedented level of collaboration with the singular goal of improving the healthcare of newborns and infants. These efforts are already resulting in lives saved and will continue with these priorities in 2012.”

More about the Newborn Coalition

The Newborn Coalition (www.newborncoalition.org) leverages health IT and technology innovation to improve outcomes and reduce disparities for the newest, most vulnerable citizens. Co-founded by the mother of a baby diagnosed at 48 hours old with congenital heart disease, the Coalition has a national footprint that supports increased understanding of newborn health issues and risk factors while helping improve access to quality care and resources through vital research and pilot projects.

Media Contact: Jim Bialick, Newborn Coalition
Media E-mail: jim@newborncoalition.org
Media Phone: 858-353-3581
Media Web Address: www.newborncoalition.org

http://www.youtube.com/watch?v=dIbCUoV0SJ0

The Newborn Coalition applauds an announcement from United Stated Secretary of Health and Human Services Kathleen Sebelius today that formally adopts the recommendation to add Congenital Cyanotic Heart Disease (CCHD) to the Recommended Uniform Screening Panel.

The announcement addressed the public health importance of early detection of heart defects, and comes almost a full year after the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) voted to recommend all newborns be screened for CCHD.

Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths.  Congenital heart defects occur in 1 in 100, or one percent of live births. Approximately 25 percent of those are classified as critical CHD, requiring intervention in the first weeks or months of life. 4,000 U.S. infants die each year from heart disease.  Diagnosing heart problems in newborns is often difficult with clinical examination alone – and detecting CCHD after discharge from the nursery is associated with significantly higher rates of heart-related morbidity and even death. The Secretary’s statement recognizes the use of pulse oximetry as a screening tool is a simple, non-invasive, low-cost method to help detect hidden heart problems in newborns.

“This is a historic day for babies and families.  We commend the Secretary and her advisory committee, along with countless advocates, medical professionals and public health leaders for recognizing the vital impact of universal screening for critical heart defects. Simply put, fewer babies will be sent home from the hospital undiagnosed – and lives will be saved,” said Jim Bialick, Executive Director of the Newborn Coalition.

The Secretary’s action is expected to encourage states, health care facilities and clinicians to provide this screening and continue to improve the knowledge base and implementation tactics.  It also directs the National Institutes of Health (NIH) to fund research activities, and the Centers for Disease Control (CDC) to fund monitoring activities and HRSA to guide the development of emerging screening standards and educational tools.
“The only thing worse than having a newborn diagnosed with heart disease is having a newborn go undiagnosed with heart disease,” said Annamarie Saarinen, board chair of the Newborn Coalition, and mother of 2-year-old Eve, CCHD survivor.  “We were privileged to participate in the federal working group convened by HRSA – along with many skilled and passionate medical professionals, pediatric health organizations, public health leaders, and advocates.  We believe much of the early work laid the foundation for states to more fluidly adopt this screening.”

The federal expert working group report has been published online in Pediatrics can be viewed here:Newborn Screening for Heart Defects

Using Pulse Oximetry Recommended.  The report has already been leveraged by states such as New Jersey, which recently became the first state in the country to protect the health of newborns from potentially life threatening heart defects by requiring universal pulse oximetry screening.  Several other states have legislation pending or have implemented pilot programs to screen newborns for heart defects as a standard of care.

The full letter from Secretary Sebelius can be viewed on the SACHDNC website:

http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/index.html

More about the Newborn Coalition

The Newborn Coalition (www.newborncoalition.org) serves as an unrelenting advocate for infants and families.  The coalition leverages health IT and technology innovation to improve outcomes and reduce disparities for the newest, most vulnerable citizens. Co-founded by the mother of a baby diagnosed at 48 hours old with congenital heart disease, the Coalition has a national imprint that supports increased understanding of newborn health issues and risk factors while helping improve access to quality care and resources through vital research and pilot projects.

Newborn Coalition – 750 9th Street NW, Suite 750, Washington DC 20001

See entire post at Broadbandmatter.com.

The Newborn Coalition, an advocacy group for America’s newest, most vulnerable citizens and their families, applauded the Committee for voting to recommend this vital screening – only the second condition to be added for inclusion to the mandatory newborn screening roster and the first point of care screening to be recommended by the committee. Pulse oximetry screening for CCCHD joins hearing screening as the only other point of care, non-metabolic screening to be recommended for all newborns.

“This is a huge win for the critical congenital heart disease community and the Newborn Coalition,” said Annamarie Saarinen, coalition board member and mother of a toddler diagnosed with a critical congenital heart defect at 40 hours old. “The Advisory Committee has taken a historic step forward — laying the groundwork for important point of care screenings that can improve outcomes and save lives. We thank the Committee for their positive decision on behalf of all the babies lost to heart defects, those surviving with pediatric heart disease, and for all future newborns who now have an improved chance of survival.”

Congenital heart defects are the more prevalent birth defect, affecting approximately 1 in 100 live births in the United States, and around the world. Each year in the U.S., 40,000 babies will be diagnosed with heart defects or heart disease, and 4,000 of those will not reach their first birthday. Like many other diseases and disorders addressed by newborn screening, heart defects are largely hidden and without recognizable symptoms. About a fourth of all CHD cases involve Critical Congenital Heart Disease (CCHD), defined as a condition that requires surgery or catheter intervention in the first year of life. Research has shown early detection to significantly improve outcomes and save lives.

Pulse oximetry screening is a simple, non-invasive screening tool that measures how much oxygen is in the blood and can also help to identify babies that may have serious heart problems before they leave the newborn nursery. Without early diagnosis and treatment, many infants with CCHD can end up in heart failure — with potential neurological damage, developmental delay, organ failure and/or long term feeding issues.

“The Newborn Coalition and its members absolutely support SACHDNC in making this recommendation and look forward to continuing to collaborate working with appropriate federal agencies, providers, Secretary Sebelius, and the advocacy community to make sure this new standard of care is implemented meaningfully and in a timely manner,” said Jim Bialick, executive director and board member. “Of the estimated 28,000 children die before their first birthday – 1/7 of them die from congenital heart disease. It was pivotal to the Newborn Coalition to ensure all babies be screened for the most prevalent birth defect — it was our first formal policy priority.”

The Advisory Committee’s policy recommendation will now be presented to Kathleen Sebelius, Secretary of Health and Human Services. The recommendation includes surveillance, education and quality control, to be supported by the National Institutes of Health (NIH), Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC), as this newborn screening proceeds.

About SACHDNC The SACHDNC was established in February 2003 to advise the Secretary of the U.S. Department of Health and Human Services regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. There is currently a formal process for individuals or organizations to nominate a heritable disorder to be considered for inclusion in the recommended uniform screening panel (http://www.hrsa.gov/heritabledisorderscommittee/nominate.htm).

About the Newborn Coalition The Newborn Coalition (www.newborncoalition.org) serves as an unrelenting advocate for the newest, most vulnerable citizens and their families by advancing public policies that fight infant mortality and improve outcomes for newborns via education, health care technology, early detection and prevention, and rural health and telemedicine. The Coalition includes lawmakers, health industry representatives, governmental agencies, non-profits, educators and child advocates committed to advancing policies, care and outcomes for the youngest, most fragile citizens and engages in broad public-private partnerships with like-minded organizations, non-profits, the administration, the U.S. Department of Health and Human Services, HRSA, the NIH, CDC and others to improve education, outreach and outcomes for newborns through infancy.

“We have the ability to reduce the infant mortality rate in this country. We have the technology, the know-how, and the expertise to fight the statistics,” said Congresswoman McCollum. “Through groups, such as the Newborn Coalition, we can effectively tackle this problem that unnecessarily plagues far too many newborn babies and their families.”

~Congresswoman McCollum, National Press Club, September 15, 2010

SOURCE: Newborn Coalition

Newborn Coalition Jim Bialick, 858-353-3581 jim@newborncoalition.org

A long-time supporter of newborn and maternal/child health issues, Congresswoman McCollum applauded the kickoff of the Newborn Coalition, calling for additional support to address these health challenges.

“We have the ability to reduce the infant mortality rate in this country. We have the technology, the know-how, and the expertise to fight the statistics,” said Congresswoman McCollum. “Through groups, such as the Newborn Coalition, we can effectively tackle this problem that unnecessarily plagues far too many newborn babies and their families.”

Every year in the United States, over half a million babies are born prematurely. An estimated 28,000 children die before their first birthday – 1/6 of those from congenital heart disease alone. America’s infant mortality rate – one of the highest in the industrialized world – is on the rise for the first time since the 1950′s.

The Newborn Coalition’s work will advance public policies that fight infant mortality and provide care for vulnerable newborns. The group will develop public-private partnerships that engage like-minded organizations, non-profits, the White House, Congress, the U.S. Department of Health and Human Services, the Health Resources & Services Administration (HRSA), the National Institute of Health (NIH), the Center for Disease Control (CDC), and others.

“The broad range of expertise and insight of these individuals will ensure the federal portfolio affecting newborns continues to advance – and the health and well-being of newborns consistently improves,” said Jim Bialick, Executive Director and Board Member. “The committee’s focus on the newborn ecosystem and applicable research and pilot programs across federal agencies will be valuable in identifying the best possible opportunities to improve health outcomes for the youngest children.”

The Newborn Coalition serves as an advocate for the newest, most vulnerable citizens and their families through partnerships that enhance health care delivery and health IT impact on newborns and families.

Congresswoman Betty McCollum serves on the House Appropriations and Budget Committees.

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New Venture in Newborn Health Aims to Steer Federal Agenda Starting with Congenital Heart Disease, Telemedicine, Screening Education

What:  National Press Briefing Launching the Newborn Coalition
The Newborn Coalition includes lawmakers, health industry representatives, governmental agencies, non-profits, educators and child advocates committed to shaping policies and advancing a federal agenda that promotes education, health care innovation and excellence, early identification/prevention, rural telehealth, research and emerging technology to improve outcomes for newborns.
Who:
U.S. Rep. Betty McCollum (D-MN), pediatric clinician and public advocate Darshak Sanghavi, MD and invited representatives from the White House, U.S. Dept. of Health & Human Services, National Institutes of Health, the Health Resources Services Administration, private sector health innovators, non-profits and child advocacy organizations.
When & Where:
Wednesday, September 15, 2010
4:00 PM in the Murrow Room, 13th Floor
5:00 PM in the First Amendment Lounge
National Press Club (14th & F. Streets)
529 14th Street Northwest, Washington DC, 20045
Note: Representatives of the news media are also cordially invited to a 5:00 pm reception in the First Amendment Lounge following the news conference.  For every participant in this landmark event, the Newborn Coalition will make an in-kind donation to NICU families at Children’s National Medical Center in Washington D.C.  This hospital is one of many in the U.S. adopting proactive newborn health programs that support early detection of frequently undiagnosed disorders that endanger newborn lives.

Contact: Jim Bialick
jim@newborncoalition.org (858.353.3581)

*Please RSVP to annamarie@newborncoalition.org