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Harnessing Technology to Improve Outcomes and Reduce Disparities for the Youngest Patients

Washington, D.C. (RPRN) 9/19/13 — In coordination with National Health IT Week and the 50th Anniversary of Newborn Screening, and Infant Mortality Awareness Month, the Newborn Coalition today announced its 2014 policy priorities addressing immediate objectives for leveraging health IT, medtech and biotechnology in support of newborn health, including:

Early Detection + Intervention – secure reauthorization of the Newborn Screening Saves Lives Act (HR 1281), a vitally important law for early detection and treatment of newborns with critical health problems. Ensure the Act includes provisions for bolstering health IT infrastructure and hospital data interoperability between providers and public health departments. Continue to support provider and public health with educational and policy resources, particularly for the implementation of new tests and methods for early detection, diagnosis and follow-up, such as newborn heart screening using pulse oximetry.

Newborn Electronic Health Record – facilitate the implementation of the multi-center, multi-state “Growing Needs” project, where hospital newborn screening data serves as the foundational piece and first electronic birth notification and vital registration for state departments of health. The Newborn Electronic Health Record then serves as an organic hub of information for all reportable conditions, screening information, immunizations and disease/disorder surveillance.

Care Across Borders – advocate for bi-partisan policies and IT-enabled systems that allow physicians to use technology to collaborate across facilities, health networks, state lines and Medicaid borders in support of newborn health.

Foster Innovation, Technology + Interoperability – develop and advocate for policies and programs that facilitate timely and efficient regulation, encourage innovation, as well as safely bridge the gap between consumer technologies and medical devices that advance care for neonatal and pediatric patients.

The Newborn Foundation| Coalition will build upon the significant expansion of its state and federal advocacy efforts. In 2013 the Coalition took part in more than 150 hearings with Members of Congress and staff, as well as testified before the Energy & Commerce Committee significantly raising the visibility of newborn health issues on Capitol Hill.

“Babies continue to be among the most at-risk health populations. Connecting babies with the care they need is a critical demand, and we believe Health IT, telehealth and mHealth can enable that sort of access and improved care,” said Jim Bialick, Executive Director, Newborn Coalition and Newborn Foundation. “Leveraging these priorities, we continue to collaborate with the private sector, decision-makers here in Washington, D.C., as well as public health, provider, research, NGO and advocacy communities on key issues that impact the health and well-being of newborns and infants.”

The priorities are compiled with input from the coalition’s advisory board and expertise from the organization’s numerous partners in industry, medical, academic, research, and public policy. The Newborn Foundation actively develops and implements pilots and demonstration projects that accelerate the adoption of health technologies and leverage the Newborn Coalition’s policy efforts.

In 2013, the Newborn Foundation | Coalition focused on the continued policy and educational resource work required to implement newborn screening for the Critical Congenital Heart Disease (CCHD), the most common and deadly of all birth defects. The Newborn Coalition’s cchdscreeningmap.org shows an additional 21 states enacted CCHD legislation or statutorily required screening in 2013, bringing the total number to 31. When the Newborn Coalition spearheaded efforts in 2010, the number of U.S. babies screened for heart defects was less than 1/3 of one percent. Today, nearly 1.2 million, or 30 percent are being screened in states, regions and institutions that have added the test, with that number anticipated to more than double in 2014, as additional states with recently enacted laws begin universal screening at their hospitals. The Newborn Foundation will continue it’s current initiatives, including pilot project follow-up to the inaugural China Summit on Newborn Screening and Early Detection of CHD, in collaboration with the China Office for Maternal and Child Health Surveillance, international NGOs, numerous state departments of health, and all federal health agencies that touch the healthcare ecosystem.

About the Newborn Coalition

The Newborn Coalition 501(c)(4) (www.newborncoalition.org) and the Newborn Foundation (www.newborn-foundation.org) 501(c)(3) and are among the only multi-national organizations leveraging health IT, medtech and biotechnology innovation to improve outcomes and reduce disparities for newborns. The organizations have created a measurable footprint that supports increased understanding of newborn health issues and risk factors while helping improve access to quality care and resources for the newest, most vulnerable patients through vital research and pilot projects.

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

Media Contact: Jim Bialick
Media E-mail: jim@newborncoalition.org
Media Phone: 202.559.4551
Media Web Address: www.newborncoalition.org, www.newborn-foundation.org



Washington DC (RPRN) 09/22/11 — Newborn Coalition Applauds Action that Will Save Lives

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



Washington, DC - Earlier today at the National Press Club, Congresswoman Betty McCollum (MN-04) helped the launch of the Newborn Coalition – a group of advocates dedicated to raising awareness of newborn health care needs. The Newborn Coalition will work with policymakers to develop a technology-driven approach to improve outcomes for newborns via education, health care innovation, early detection and prevention, and rural health and telemedicine.

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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Uncategorized

Newborn Coalition Announces 2014 Agenda

Harnessing Technology to Improve Outcomes and Reduce Disparities for the Youngest Patients Washington, D.C. (RPRN) 9/19/13 — In coordination with National Health IT Week and the 50th Anniversary of Newborn Screening, and Infant Mortality Awareness Month, the

HHS Adopts Recommendation to Screen Newborns for Heart Defects

Washington DC (RPRN) 09/22/11 — Newborn Coalition Applauds Action that Will Save Lives 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

September 15, 2010 — Congresswoman McCollum Helped Launch of Newborn Coalition

Washington, DC - Earlier today at the National Press Club, Congresswoman Betty McCollum (MN-04) helped the launch of the Newborn Coalition - a group of advocates dedicated to raising awareness of newborn health care needs. The

Uncategorized

Newborn Coalition Announces 2014 Agenda

Harnessing Technology to Improve Outcomes and Reduce Disparities for the Youngest Patients Washington, D.C. (RPRN) 9/19/13 — In coordination with National Health IT Week and the 50th Anniversary of Newborn Screening, and Infant Mortality Awareness Month, the

HHS Adopts Recommendation to Screen Newborns for Heart Defects

Washington DC (RPRN) 09/22/11 — Newborn Coalition Applauds Action that Will Save Lives 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

September 15, 2010 — Congresswoman McCollum Helped Launch of Newborn Coalition

Washington, DC - Earlier today at the National Press Club, Congresswoman Betty McCollum (MN-04) helped the launch of the Newborn Coalition - a group of advocates dedicated to raising awareness of newborn health care needs. The