I certainly have had my say about the American Heart Association (AHA) starting here: https://amandaroseadams.com/2012/02/25/influence/. At the time I promised equal time to a friend who had a different but not exactly opposite perspective on the AHA. She concedes the numbers I give that show a national funding of $5/patient in AHA CHD funding are accurate, in fact her more current number of 9.4 million is less than my 2009 number.
However, Dana’s local office has been terribly supportive of CHD initiatives and helping them make huge strides in awareness, community building, and inclusion. I agree with her that if every AHA office was like this things would change. In short, Dana and I have agreed to disagree that the lack of funding is a deal breaker, it is for me and it’s not for her. I’m glad we don’t agree because her attitude is both positive and productive and I admire and respect her for it.
We need all kinds of advocates and heart warriors on different fronts in this battle to change the conversation to include CHD, and Dana is getting results in Arkansas. I applaud her and I welcome her and her perspective to the blog. I hope you’ll listen and learn from what she has to say and then chart your own path based on your own experiences and resourcers. Without further ado, here’s Dana!
Briefly, I understand that many of the “basic” facts quoted in your blog may be fairly correct, in fact, knowing you, I’m going to assume they are! I certainly haven’t had time to compare them to any updated info.
In short, I would hope everyone knows how to consider those facts in context with their own situations and state situations. I also believe that while the National AHA has many basic guidelines and standard replies – a HUGE amount of the decision making progress should be made considering the status, helpfulness and willingness of your local AHA’s to step up and be involved. And I’ll be the first to say that if WE, AS CHD PARENTS, don’t step up and make our wishes known, then the situation will never change. And I believe that if we turn our backs completely on the AHA, will certainly never make any progress towards making change.
I think a better answer is for individuals to go their local AHA offices, see how involved and supportive they are willing to be. Who knows, we may find other offices, like ours here in Little Rock, who are willing to go far above and beyond in making CHD a major part of their platform! The LR offices are trying loyally to use their resources and influence to get “certain other unnamed CHD related organizations” to also step up to the plate here in Arkansas. They have a great reputation and connections, which most of us could not hope to build in any short amount of time. Our offices here also have a great and dedicated staff, who is more than willing to do what it takes to integrate CHD into the big picture.
Here in Arkansas, there are no real support groups (I am excluding Arkansas CHD Coalition in this assessment). There are few “CHD related” organizations, and most of them have not really thought about stepping outside of their own “plans”. Until recently, there has been no one trying to coordinate support and advocacy efforts for CHD awareness, support groups or for any purpose that steps outside their own organization.
These are problems you run into anywhere, and with every organization. I can do a “post to friends” for input and feedback on ANY organization related to CHDs and I will get both good and bad reports for each of them. I cannot find ANY organization that has not made someone mad somewhere. But, thus far, here in our state, AHA has been the MOST supportive, the most helpful and the most open to considering scenarios outside their “norm”.
The progress that has been made in our state in the last year is amazing. We have seen several ‘non-profits” put aside many of their prejudices and come together for an event that DOES NOT raise funds, but instead offers a fun and entertaining opportunity for CHD families to interact and socialize, while also sharing with those families information about many opportunities and programs that these individual organizations can offer – but without being in a competitive setting, nor asking for any money from these families.
I fully expect to see a committee created soon which will pull together many of these same organizations in the Pulse Ox Advocacy effort, bringing all of their individual efforts into one organized effort.
In general, to the national scenario, what most people call the “trickle down” funding has done a huge amount for CHD treatments and possibilities. Catheter procedures, new valve technology, new stent technology, etc… In relation to direct funding for CHD, here are some facts about the AHA and CHD funding:
– The American Heart Association is second only to the federal government as a source of funding for pediatric cardiac research.
– Much of the AHA’s current funding for pediatric cardiac research goes to research awards focused on how the heart develops before birth and how congenital heart defects develop.
– Last year the amount spent on new research awards related to children’s heart disease totaled nearly $9.4 million.
– The AHA also funds scientific conferences and symposia designed to update the understanding of the anatomy, diagnosis and medical and surgical management of congenital heart disease.
This is the basic foundation of my reply. As with your opinion, in your blog, I too, am using my PERSONAL experience to form my PERSONAL opinion. I am also looking hopefully towards seeing the changes that these efforts can make on many of the reports you offered up. I quite fairly respect and appreciate everyone’s personal opinion, I just don’t want to see ALL AHA offices generalized as uncooperative and not concerned with CHD, when our office has gone so far above and beyond. I just don’t feel that is a fair or accurate assessment.
Dana Brock Hageman
Arkansas CHD Coalition