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The Power of the Patient’s Voice - Elaine Grossaint

Last fall I was given the honor of attending the Rally for Medical Research in Washington DC by the American Heart Association. It was the 5th year that the Rally for Medical Research has taken place, bringing experts from over 300 different health associations together from across the country.

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I first became involved with the AHA because of my work as the program director for Mended Hearts in Boise. When they first called me my immediate reaction, was “why me?” I had never thought of myself as one to lobby, write my congressmen or get involved politically.

After consideration, and talking with others, I realized this may be my chance to voice my opinion and support for those suffering from heart disease young and old. Going in I was still skeptical that my voice would make a difference and that I had the training to be an effective advocate. However, the training provided by the organizers of the Rally was phenomenal and the support by the American Heart Association staff both in Idaho and D.C. was exceptional.  This rally brought together researchers, physicians, and patient advocates, as well as survivors like myself. When I asked those that had participated in the past if they felt their voice really made a difference, without any hesitation the answer was always YES!

Congress was being urged to provide the National Institutes of Health (NIH) with a $2 billion increase for FY2018, or a total funding level of $36 billion. And, to reach bipartisan agreement to raise the budget caps, which will allow Congress to support robust, sustained, and predictable funding increases for NIH in FY 2018 and beyond.  It was because of funding from NIH that the TAVR procedure, a less invasive heart valve repair surgery, has become another option for those with valve disease.  Funding from NIH is also providing options for babies born with Congenital Heart Defects, and other life-saving medical discoveries to combat America’s No. 1 cause of death. 

Now that I’ve discovered how easy it is to support the issues that affect those of us with heart disease I’ve gotten our local chapter of Mended Hearts involved with advocacy at the state level. Our chapter is working to pass legislation that would require pulse oximetry screening on newborns in Idaho, which can detect 90% of congenital heart defects. Idaho is only 1 of 3 states that do not mandate the screening, and we are hoping to change that in 2018. 

I encourage you to share You’re the Cure network information with your family, friends, and anyone who may be impacted by heart disease and stroke. It may be the quickest, easiest way for you to help save lives.

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