Posts Tagged ‘Vision 2020’

On today’s agenda: Vision 2020

April 23, 2010

I hold in my hands the future of Adult Congenital Cardiology: the Adult Congenital Heart Association’s (ACHA) Vision 2020 Phase 1 Report. The long-term goal of Vision 2020 is to make Adult Congenital Cardiology an established, recognized field that will deliver quality care to adults with Congenital Heart Defects throughout the United States.

Begun as an initiative of the ACHA in December of 2008, the goal of Vision 2020 is to ensure that every Congenital Heart Defect (CHD) Survivor be able to receive life long Adult Congenital Cardiac care after they turn eighteen. This care will be 1) High Quality; 2) Age Appropriate; 3) Research Based; 4) Coordinated and Integrated; and 5) Available in all regions of the country.

Although over one million adults in the United States live with a Congenital Heart Defect, it is estimated that 50% to 90% of them are not receiving regular care by an Adult Congenital Cardiologist. To reduce this number, four working groups have been created:

1) Program Accreditation – dedicated to creating policies and procedures that will create a legitimate credentialing systems for Adult Congenital Heart Defect (ACHD) programs.

2) Regional Care – will focus on determining the total number of Congenital Cardiology assets in a region of the country and determine the best way to transition a patient living in that region from Pediatric care to Adult care.

3) Workforce – tasked with determining and creating the educational and experience criteria needed to be certified to provide Adult Congenital care.

4) Business Model – most, if not all, Adult Congenital Heart Defect Programs will be part of a larger institution or hospital. The Business Model Working Group will help determine the best ways the ACHD program can contribute top the overall financial health of the larger institution.

It is an ambitious document, and the obvious question is – will it work? In its original form, almost certainly not. No plan is perfect from the outset, it will almost certainly be rewritten as time passes and new challenges emerge. Reality  2020 may very well be much different than what the Vision 2020 plan envisions.

But the number of adults with a CHD grows about 5% per year. There is already Adult Congenital Cardiology training going on, but almost all of it is informal. The doctors who have served us over the years are guiding younger Cardiologists who have shown an interest in Adult Congenital Cardiology. So with the patient population growing and informal training already taking place, it is only a matter of time before a medical school begins to offer specialized courses. And when you have formal medical training, you’ll soon have a specialty. And then you’ll need someone to decide what exactly makes a doctor a specialist; and how many specialists and what kind of services need to be offered to be accredited.

And in the long run, this isn’t really for adults. The story is told of the Country Music Superstar who was approached by a songwriter with a nifty little Christmas tune. At first he turned it down flat, but then his wife said “Have a heart, this song won’t make much money but just do it for the children.” So he called the songwriter back and made the recording. The singer was Gene Autry, and the song was Rudolph the Red Nosed Reindeer.

This isn’t for us –  it’s for the future generations. At Lobby Day 2010 yesterday, one of our older members (early 60’s) told a twenty-something year old CHDer “Remember what you have seen here today. One day, it will all be up to you.”

What’s the goal?

June 29, 2009

Duncan Cross is at it again; this time he’s got a huge bone to pick with the Crohn’s and Colitis Foundation of America (CCFA).  The nation’s health care system is being renovated, everything is on the table, and practically everyone in Washington DC is putting their two cents in. The only group not fighting to get into the debate is the International Association of Airship Navigators.

So what’s Duncan upset about? The CCFA wants their members to support a Senate bill that will promote research and establish awareness programs.  So while everyone else is redefining health care as we know it, the CCFA apparently wants taxpayers to pay for those little  purple rubber “awareness bracelets”!

No wonder Duncan is upset. He’s got another post worth mentioning about advocacy organizations that funnel all their time and effort (and fund raising) into finding a cure.

For a lot of Chronic Illnesses, a cure may be a long time off. I don’t think there will ever be a “cure” for Congenital Heart Defects (CHD’s); Wikipedia lists 23 separate defects and also states that the list is incomplete. (When I count them up I usually get 35 CHDs, not counting any “blends” – one defect superimposed on top of another.)

So while all these advocacy groups are running around shouting “Donate to us! Help us find a cure! We need your help to find a cure!” at the top of their lungs, a lot of them are forgetting one of the most important things they could do:

Helping those who suffer from that illness to live their lives to the fullest.

That’s one thing I like so much about my group, the Adult Congenital heart Association (ACHA). Yes, we’re all about the technology and the research, but our mission statement makes it clear that one of our goals is “to improve the quality of life and extend the lives of congenital heart defect survivors.” And that’s right there on our website’s front page for everyone to see. Eliza’s doing her part to keep us all going by organizing the ACHA Bolder Boulder team. The national office is promoting our “Don’t Get Lost” program to return CHDers to care who were told that they were “fixed” (a common occurrence). They have also recently developed Vision 2020, our initiative to make sure that everyone with a CHD has good health care – from their Pediatric Cardiologists through the transition to an Adult CHD doctor. We’re not just looking for a cure – we recognize that part of the “cure” is 1) better medical care and 2) doing your part to take care of yourself.

So take a good close look at your support group. What are their goals? What are they doing? Trying to find a cure is great, and hopefully one day someone will figure it out. But until then, is your group trying to help you make it day to day?

If not… it might be time to look somewhere else.