Tuesday 23 Sep 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

Fighting for the youngest heart disease patients

Published: 5:12 pm CDT, February 19, 2014

Congenital heart defects are the No. 1 birth defect in the United States and the leading killer of infants with birth defects, tragic facts that the American Heart Association is working to combat on many fronts.

These defects are heart problems that are present at birth, including holes in the heart, narrowed or leaky valves, and malformed or missing vessels and heart chambers.

While the American Heart Association is funding scientific research – and working to protect babies and children through a large number of advocacy, education and awareness campaigns – some critics feel the association isn’t doing enough.

A recent online campaign is urging the American Heart Association to dedicate all income derived from association fundraising efforts that include images and messaging relating to children to congenital heart disease research and programs. The online petition suggests the association spends only 1 percent of research dollars on congenital heart defects.

The association actually spends about 10 percent of its research dollars on projects related to children, in addition to much more funding that benefits children although it is not specifically geared toward them, said American Heart Association Chief Mission Officer Meighan Girgus.

“We are very sympathetic to people who have lost children and to those who are raising kids with these defects, and we are committed to combating these terrible problems” Girgus said. “We will continue to invest in child-related research. But, as much as we would like to put many, many more resources into congenital heart defect research, we also have a very broad mission. So we must fund many worthy research projects across the spectrum of cardiovascular diseases and stroke.”

All told, the American Heart Association funds more pediatric cardiac research than any organization outside the federal government – and probably would spend more if more researchers applied for research specifically aimed toward congenital heart defects, Girgus said.

The association currently funds 194 active pediatric and congenital heart defect-related research grants worth almost $35 million. In fact, in the past fiscal year the success rate for applications related to pediatrics was 16.7 percent – slightly higher than the 16 percent success rate for all of the association’s research applications.

Those efforts in research, and other work, have helped reduce death rates from heart disease and stroke over the past few decades. Death rates from congenital heart defects dropped 31 percent from 1999 to 2010 among children and adults.

But research is just a fraction of the work the AHA does on congenital heart defects.

For example, the association has joined with many organizations and activists to advocate for the use of pulse oximetry screening to check for congenital heart defects. This low-cost, highly-effective, and painless bedside test can be completed in as little as 45 seconds at less than $4 per baby.

Here’s a video to show just how simple it is.

Illinois, Michigan, Missouri, New York, and South Carolina were among a growing list of about 30 states in which all newborns will be screened using a pulse ox test. Most other states are either working to pass legislation or are developing rules to carry out previously enacted legislation.

In September, an American Heart Association and March of Dimes volunteer testified before a U.S. Senate committee about the importance of comprehensive newborn screening after it was discovered through pulse oximetry screening that her son had a congenital heart defect. The Senate passed the bill.

The American Heart Association will continue to support efforts to enact legislation into law to improve the country’s newborn screening system and save lives. The association has also fought to ensure that children born with congenital heart defects and other pre-existing medical conditions can no longer be turned down for insurance coverage and their parents can’t be charged higher premiums for their coverage.

Meanwhile, one of the association’s scientific councils, called Cardiovascular Disease in the Young, has more than 1,000 members, including pediatric healthcare providers and scientists, who are doing groundbreaking work on congenital heart defects and other areas.

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  • Christie Hammond Huggins

    Great article. Thank you dearly for your support for CHD families. And thank you for this information and clarification. We are proud supporters of AHA!!!

  • Christie Hammond Huggins

    Great article. Thank you dearly for your support for CHD families. And thank you for this information and clarification. We are proud supporters of AHA!!!

  • Christie Hammond Huggins

    Great article! Thank you for the information and clarification. Thank you dearly for your research and support for CHDs. We are proud AHA supporters!

  • Christie Hammond Huggins

    Great article! Thank you for the information and clarification. Thank you dearly for your research and support for CHDs. We are proud AHA supporters!