The Realities of the Situation

This may come as shocking news to some, but not everyone thinks that the Congenital Heart Futures Act is wonderful. They can find no good reason for it.

These guys, for example, think the Congenital Heart Futures act is “egregious”. A complete waste of time and money. And in a way, they have a point. If you are not affected by a Congenital Heart Defect or are not familiar with the costs involved, it very well may not make sense to you. And with the Stimulus plan and the bank bailouts, yet another expenditure for a disease may not seem like the best use of resources.

That’s why you need to be familiar with the facts. Estimates of the number of people living with a Heart Defect in the United States range from 2.1 million (the number I use) to 3.6 million. Two million, one hundred thousand people fighting a chronic disease generate an enormous amount of health costs. These costs fall both on private insurers AND on Medicare/Medicaid… so like it or not, every taxpayer gets to share our medical bills.

And when you consider those 2.1 million people grow an average of 5% a year due to medical advances allowing us to live longer lives, those costs are going nowhere but up.

As a personal example, I take eleven different medications a day. You probably just rocked back in your chair and thought “Eleven? Per DAY?!?!” – but that’s not the highest amount that I know of. I know other CHD Survivors who take more, and some who take less. (Mind you, we aren’t even considering the cost of surgeries and hospitalization, just medication.) But if the research and the registry created by the Congenital Heart Futures Act can eliminate one medication from a Survivor’s daily routine, the cost savings would be significant.

And what’s the cost of the Congenital Heart Futures Act? At Lobby Day 2009, it was estimated that the cost of the bill would be slightly less than twenty million dollars per year. $20,000,000 – a drop in the bucket!

But here is a dirty little secret you never anticipated: We have to fight other heart organizations, too!

According to the Wall Street Journal,

The group, however, wants more federal-research funding to go toward heart diseases, which cause more deaths in the U.S. than any other disease. The patient-advocacy group said heart disease is projected to rise by 16% each decade, and deaths from stroke are expected to double from 2000 to 2032.

The group said it worries that without comprehensive changes, reductions in heart-disease deaths over the past few decades may be erased.

The “group” that wants more federal funding is the Big Red Heart. And the Big Red Heart naturally feels that it is the best group to receive and allocate the extra funds.

The Journal article notes that the National Institutes of Health allocates $25 billion a year for medical research, but only 4% of that goes to heart studies.  So roughly a billion dollars a year, if my math is correct. So the “pie” of federal funding is a billion dollars each year, and if you are at the table when the pie is served, you get a  slice. And who doesn’t love pie?

Well, we aren’t at the table – yet. But since everyone loves pie, nobody is planning to share. “MY pie! Go bake your own!” Well, we would if we could, but this is where the pie is served, and we don’t want that much, anyway. But we’ve got to be at the table with a plate and a fork when the pie is served, or we go hungry.

And that is why your efforts, at the local level, are going to be so important.


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9 Responses to “The Realities of the Situation”

  1. Kelly Says:

    Steve, This is the comment I posted on the Liberty website, they haven’t posted it but at least I tried.
    Egregious is defined by Webster’s as “outstanding for undesirable qualities; remarkably bad; flagrant.” I am hopeful that your inclusion of the Congenital Heart Futures Act (S-621)HR 1570 as an example of poor decision making by Congress is simply an egregious mistake on your part. If it remains your intent to flag this bill as “undesirable, remarkably bad,” then allow me to shed some liberty on your position. This act is simply a VOLUNTARY registry of Congenital Heart Defects, Congenital Heart Disease, and the subsequent treatments . 1 out of every 120 children is born with a CHD in America. Where I live, in South Florida, my one year old son is 1 out of 78 born with a critical heart defect. We do not know why these defects happen because there have been no research dollars allocated (contrary to popular opinion the American Heart Association focuses on aquired heart disease, very different than heart disease beginning at birth) My son was fortunate enough to have life-saving heart surgery at 5 months old and thankfully my husband and I are employed and are able to afford insurance that has thus far paid the majority of the $500,000. in medical bills. We are not able to know how the medications we give him will affect his health, because there is no record of all the pediatric patients taking it. We will wake our son at 3:00am this morning and drive 90 miles for more anesthesia and procedures that no one knows the long term effects of. We are joined in a guessing game regarding his future by brave surgeons, cardiologists, pulmonologists, and fellow heart warriors that share in the frustrations of not having any hard data on the defects, diseases and treatments. Your own candidate, Ron Paul holds an admirable position on abortion because he witness firsthand a babies’ life carelessly discarded. It repulsed him and made him an avowed pro-life candidate. He understands that at the core of America is the noble commitment to life, liberty and the pursuit of happiness. The Congenital Heart Futures Act means life to my son and countless others. Please take the time to familiarize yourself with it and get behind this life and liberty giving legislation. Thank You.

  2. carolyn compton Says:

    Sorry, Steve, another long comment.

    What a wonderful comment Kelly. You write very well and from the heart. It reminds me of the type of writing/speaking that Steve as espoused in his blogs. Steve, I admire your simple language about complex issues. I am very surprised at the costs that have been quoted in Kelly’s comment. Is US$500,000 true? I am shocked at the expenses. I wonder who and where in the Australian system, the money is being buffeted? One of my twin boys has had one heart surgery, required neonatal care, was in hospital antenatally for 5 weeks and in total we were in hospital for 9 weeks in 2007. A hospital bed is AUD $800+ a night (not paid for by me but medicare and private hospital cover). there were no issues surrounding money because either public or private, you’re paying your premiums and that’s it. If you don’t have private hospital cover, you pay more than 1% in tax to cover it proportionate to your income. Everyone pays medicare, but get tax benefits if they opt for private. We didn’t pay a gap because the hospital wants to encourage you to go private. So I think I bought medicine without refund (because I don’t have a benefit card), paid for parking and bought a coffee mug as my total monetary expenses.

    • Steve Says:

      I’m not familiar with Kelly’s personal finances, but $500,000 for hospitalization and a major surgical procedure is not unusual. As a personal example, when I was in the Intensive Care Unit (ICU) at Johns Hopkins after my first surgety in 1967, the cost was $60.00 a day (Not much now, but pretty costly by 1967 standards). The last time I was an ICU unit (2002) the cost was $2200.00 per day.

  3. Kelly Says:

    Yes, that is the correct figure in US dollars. That accounts for 14 months of JBR’s medical costs related to his CHD. That includes two surgeries, four weeks in various hospitals, outpatient treatments and medications at four thousand dollars a month. Thank God for good insurance with no lifetime cap.

  4. Teri Martin Says:

    I left two comments on this on their blog and twitter. I am also posting this about on both of my blogs. I can not believe people can stand for Freedom and still say our lives are a waste.

  5. carolyn compton Says:

    i am so shocked at these costs. i have had many episode with both my boys, ambulances and NICU and PICU for my heart baby and we in no way saw these costs. i am sure thay are there somewhere, but wow.

  6. Kelly Says:

    I know it’s shocking Carolyn. The medications are actually more…one shot of Synagis (RSV protection) is $4000.00 every 28 days. Our insurance just sent me a letter saying they don’t feel he needs it anymore. I had to get letters from the cardiologists, pulmonologist and pediatrician telling them he does need it for 2 years (RSV season is year-round in South Florida) Hopefully they’ll reconsider.
    His other meds are 200.00 per month, of which we only pay $40.00.
    Families without insurance that earn too much money to be eligible for medicaid are really stuck.

  7. Flippant Snippets From A Demented Techie » Silencing “Intense Debate” Says:

    […] was reading Inspiring Hearts, which had picked up a story from Adventures of a Funky Heart by a Libertarian Blog called Liberty Maven. Liberty Maven had posted a list of the most egregious […]

  8. Stefenie Jacks Says:

    I have been following your blog since CHD Awareness week this year when I happened to stumble upon it. I have yet to leave a message on here but after reading your article on the Realities of the Situation I felt I should. Than you for posting the facts that we have yet to make it to the table for our fair share of pie. As a mother of a two year old CHD survivor who faces a lifetime of surgeries and procedures due to his complex defects I at times find it very frustrating that there isn’t more being done for our kids. The fact that we are sometimes left in the dark since heart disease is often viewed as an old person’s disease is unfair.
    I was overjoyed when I read about the Congenital Heart Futures Act and I made sure that everyone I knew did their part in contacting our state lawmakers.
    I have often thought of ways to help make a difference by spreading as much awareness as I can through the videos I have created and posted on my son’s website to starting a letter writing campaign with three other heart mom’s for CHD families. Currently we are setting up a website at and collecting stories from chd families to be mailed to Oprah, Good Morning America and a few magazines. We are hoping that we can get a large amount of letters to swamp some of the “big dogs” in an effort to give us at least five minutes to have our voices heard. I think the Congenital Heart Futures Act is helping us to gain some ground in making a difference for the future generation of CHD kids to come.

    Thank you for everything that you do to make a difference and create change!


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