Power of Advocacy and Cooperation For CHD Patients the Focus of McNamara Keynote
The death rate from congenital heart disease (CHD) in wealthier nations has been reduced 55 percent since the 1980s. In poorer nations, though, CHD has leapfrogged other diseases as a cause of death, a trend that could be reversed by following a path paved by wealthier nations.
The improvement in CHD outcomes was initially driven by new medicines, technologies and approaches, as well as a move toward team-based care. More recent improvements in outcomes however, have not been driven by the silver bullet of a single scientific advancement but by the spirit of cooperation in the health care community.
When he delivers the Dan G. McNamara Keynote today, Gerard R. Martin, MD, FACC, will examine how nations with a high sociodemographic index (SDI) have improved outcomes for patients with CHD and how they can help other nations achieve similar results.
"What I have been working on in the last 10 years with the ACC is collaboration and advocacy," says Martin, the C.R. Beyda Professor of Cardiology and medical director of Global Services at Children's National Health System in Washington, DC. "In the past, most of our medical centers were competing with each other. Over the last 10-15 years, there has been more cooperation and advocacy."
In his keynote, Martin will examine four projects that exemplify how scientific and health care system improvements have allowed more pediatric patients with CHD to live longer:
- Mandatory pulse oximetry screening for all newborns in all U.S. states. "We found that in states that adopted early and mandated hospital screenings there was a 33 percent reduction in infant mortality," Martin says. "This is an example of advocacy. We had to work with state governments to get this done and we improved survival rates for congenital heart disease as well as other heart conditions."
- The National Pediatric Cardiology Quality Improvement Collaborative has increased the number of medical centers working together to monitor the weight and oxygen levels of babies in the interstage with hypoplastic left heart syndrome. "Lo and behold, we lowered the death rate by 50 percent. There was nothing earth-shattering. It was groups working together to try to improve something where kids were dying," he says.
- The new specialty of adult congenital heart disease was created and more than 300 specialists are now board-certified. This is expected to improve the care of adults with CHD.
- The Pediatric Heart Network, supported by the National Institutes of Health, has expanded cooperative research with large multicenter clinical trials.
"There are many reasons for survival increasing in high SDI countries," Martin says. "The problem is that these gains are not translating to the rest of the world. Ninety percent of the children in the world live in countries that do not have full access to safe cardiac surgery." CHD is now the eighth leading cause of death in low SDI countries, up from the 14th position a few years ago because it is being ignored, he says.
"There have been recommendations from Children's HeartLink about increasing capacity to care for children with CHD, building the workforce needed to take care of those patients, closing the data gap and assuring appropriate financing," Martin says. "The global health community and individual countries need to acknowledge the growing burden of death from CHD and begin to invest in the building of sustainable and equitable access to cardiac care for all children."
Martin hopes that after his keynote, people will have a better insight about the power of advocacy and collaboration. "I also hope it will raise awareness about global disparities and increase the number of people speaking out about CHD in a broader effort to have our organizations promote improvements," he adds.
The Dan G. McNamara Keynote will be presented today from 10:45 a.m. – 12:15 p.m. in Room 338.
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