Not surprisingly, I am once again blogging mid-flight. Last week it was on the way to NTEN’s excellent Non-Profit Technology Conference, this week I’m headed to Washington D.C. to talk Development Mapping and take part in CHD (Congenital Heart Defect) Lobby Day. Although my participation in Lobby Day is on behalf of Little Leo Foundation, One In One Hundred and Big Love Little Hearts (three of my non-profits), I’d be going even if I was only representing Big Love Little Hearts. This piece is written to CHD groups that work in the developing world, but this applies no matter what your cause community is.
So, why would I invest time and money going to Washington to lobby for things that affect children in the U.S. when Big Love helps children in developing countries? Better yet, why is this a question I feel the need to pose or answer? Quite to my surprise, this is actually a question that both a donor and one of our Provider Partner Organizations asked me!
The answer is very simple: what happens in this country will inform what we’re doing in developing countries the next decade and the decade beyond that. What we’re able to do now is a result of research the NIH funded to create new surgical techniques and improve on old ones in decades past. Diagnostic techniques developed in the last dozen years make it possible to find children we never even knew needed our help before. Everything we do in the undeveloped world is because someone in the developed world fought hard to fund the invention and/or implementation of it.
Right now there are three reasons to be in Washington D.C. if you care about or work in the CHD community in the developing world. The first is the Congenital Heart Futures Act. The research this will fund and the registry it will create will allow us to do our jobs more efficiently and effectively for decades to come. This translates into more lives saved, period. Mortality rates for CHD have declined 30% in developed countries in the last two decades – how wonderful would it be to see those same rates in the developing world, where we’re still losing at least one third of children born with heart defects?
Pulse oximetry is the second reason and perhaps the most relevant to those of us working in the developing world. One percent of the world’s population is born with a heart defect – that’s roughly one million new cases of CHD every year. 90% of children born with CHD will be born in developing countries. Only a third of them will ever be diagnosed. Pulse oximetry is a simple, reliable and cost effective means for diagnosing critical congenital heart defects. Adding it to the National Newborn Screening Panel in the U.S. will pave the way for its use worldwide. Advances in mobile technology make it likely that in a very short time we can perform this test, log the results and send them to a doctor from a smartphone out in the field…from the places where children never get diagnosed because no one ever sees them.
The third reason to be in Washington D.C. right now is that the global CHD problem will never be solved by any one group. It won’t be solved by any one government. It won’t be solved by any one organization working in the U.S. and it won’t be solved by any one organization working in the developing world. It won’t be solved by any one doctor. It won’t be solved by any one University. There are 7 million children waiting to have their hearts repaired worldwide who can’t afford it. Even in the U.S. where qualified care is abundant, we are losing 10% of our CHD kids before they’re a year old. This doesn’t even take into account those who die while they are toddlers, children, teens, adults…this problem is gigantic and it’s going to take all of us working together to solve it. The opportunity to meet your fellow CHD crusaders and to form partnerships with them makes this not only the final, but also the most important reason to be at CHD Lobby Day.
If you’re a CHD group doing work in the developing world and aren’t planning to participate in Lobby Day, I urge you to change your mind. If you can’t make it in person please call your representative this week and/or email the national newborn screening panel. Be part of changing the lives of CHD kids who haven’t even been born yet. 10 years from now….20 years from now, you’ll be glad you did!