I firmly believe that your story is what moves people to action. But, it is important that your message be grounded with accurate information.
Let’s review: The key to successful advocacy is developing a relationship with your lawmakers. Most of my relationships are based on feelings. We laugh, we cry, we get angry. Only with a few people, my husband, my accountant, do we talk numbers.
Don’t get me wrong. Numbers can be used to create feelings, such as I found $20 in my pocket! But, those numbers have to have meaning behind them, and truth, too.
Big numbers create big thoughts. When you say that nearly 2 million people have congenital heart defects – that is a big deal. Small numbers make it personal. Nearly 1 in 100 are born with a heart defect – that increases the odds that it touches everyone. Money talks – the cost of pulse oximetry testing is less than $4 per baby. You don’t need to know a lot of statistics, a few can make an impact. But, don’t forget, nothing is as powerful as sharing your own experience.
There are a lot of different CHD statistics floating around out there. I checked the websites of 4 different reputable organizations and they all had different statistics, varying slightly in numbers and wording. The CHD community is in a bit of a tough spot. There really isn’t great US data for congenital heart disease, beyond birth. So, how do you come up with statistics when there are no hard numbers? Great question. That is why we need to advocate for CDC funding to address the huge gaps in demographic data for CHD. In the meantime, I think we need to rely on the experts’ best estimates.
When a group of experts from major health organizations and federal agencies got together to form the Congenital Heart Public Health Consortium (CHPHC), one of the first orders of business was to come up with statistics they could agree upon. It took nearly nine months.
Here are some important highlights of these “Gold Standard” statistics:
- CHDs are the most common birth defects. CHDs occur in almost 1% of births. (That is, nearly 1 in 100.)
- An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
- Nearly 40,000 infants in the U.S. are born each year with CHDs.
- CHDs are nearly as common as autism and about twenty-five times more common than cystic fibrosis.
- Approximately two to three million individuals are thought to be living in the United States with CHDs. Because
there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
- Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that
the number of adults living with CHDs is at least equal to, if not greater than, the number of children
living with CHDs.
For the complete report check these out:
Numbers are important, but so is your.
YOUR TURN: Do you believe these statistics are accurate? Are you going to use 1in100, anyway? Do you use statistics when you tell your story?