Text of the Congenital Heart Futures Act

“Something’s going to happen… something wonderful!” – Dave Bowman, from the movie 2010: The Year we make Contact

The Text of the Senate version of the Congenital Heart Futures Act is now online and can be read by clicking THIS LINK.

Let’s look at some of the highlights:

(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in collaboration with appropriate congenital heart disease patient organizations and professional organizations, may directly or through grants, cooperative agreements, or contracts to eligible entities conduct, support, and promote a comprehensive public education and awareness campaign to increase public and medical community awareness regarding congenital heart disease, including the need for life-long treatment of congenital heart disease survivors.

This paragraph authorizes the Centers for Disease Control (CDC) to develop and fund educational programs designed to increase the awareness of Congenital Heart Defects. Does this mean that once the Act passes, you’ll start seeing more news reports and stories about people living with a Heart Defect? Possibly. Some of the educational material will certainly be aimed at all physicians, and not just Cardiologists. CDC will certainly try to educate doctors about the telltale signs of a Heart Defect – possible Cyanosis, low pulseOx, unusual EKG readings, and difficulty feeding, among others – and bring them up to speed on what to do to get that child advanced medical care. Teaching a General Practitioner in a small town in Utah what to do if a child presents with CHD symptoms is probably more important than educating a prominent Cardiologist about the latest genetic causes of CHDs.

`(1) enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a comprehensive, nationwide registry of actual occurrences of congenital heart disease, to be known as the `National Congenital Heart Disease Registry’; or (2) award a grant to one eligible entity to undertake the activities described in paragraph (1).

This section authorizes the creation of a national registry of CHD survivors. Believe it or not, no national tracking system exists now. What would such a registry record?

The Congenital Heart Disease Registry–

(1) may include information concerning the incidence and prevalence of congenital heart disease in the United States;

(2) may be used to collect and store data on congenital heart disease, including data concerning–

(A) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;

(B) risk factors associated with the disease;

(C) causation of the disease;

(D) treatment approaches; and

(E) outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and

(3) may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages, including the elderly.

Research will produce a lot of numbers: How many people in this state are affected, what age range, their race, income level of their parents when they are born. Perhaps these numbers will point us to a “subset” of people that seems to be highly susceptible to occurrences of CHD. If it does, public health officials can then concentrate on two activities: 1) Getting expectant mothers out of that subset; and 2) Provide expanded health services to the group. If you can’t prevent a Heart Defect nor can you change the environment, then at least be ready to provide excellent medical care if needed.

The Director of the Institute may expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease, which may include congenital heart disease research with respect to–

(1) causation of congenital heart disease, including genetic causes;

(2) long-term outcomes in individuals with congenital heart disease, including infants, children, teenagers, adults, and elderly individuals;

(3) diagnosis, treatment, and prevention;

(4) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease; and

(5) identifying barriers to life-long care for individuals with congenital heart disease.

The best surveillance system and medical care is really just a waste of money and time if no one is trying to figure out why Congenital Heart Defects occur. It’s like running around with a bucket of water, pouring it on a house fire. What you need in this situation isn’t a bucket of water – you need the fire department! This section of the bill is our 911 call… help is on the way!

Point 4 is the key. Used in combination with the national registry, this research can point out what treatment options work best, and those that don’t. After the registry database is built up, procedures and medications won’t be “hit or miss” any more. The research will show what medications and witch surgical procedures work for certain defects… and witch ones don’t.

Money will be saved.

Invasive procedures will not take such a toll on the patient.

And our Cardiac Kids will slowly morph into happy, healthy Heart Warriors.

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8 Responses to “Text of the Congenital Heart Futures Act”

  1. Jesse Smith Says:

    This is such fantastic, encouraging, hope-filled news. Thank you for all your work promoting awareness, sharing your experience, walking with others who are “newer” to this journey, and for your passion to see this bill passed. I am celebrating with you, Funky Heart!

    Jesse (Luke’s mama)

  2. Andrea Himmelberger Says:

    This is fantastic! It sounds great. Thanks so much for sharing this information.

  3. Anna Jaworski Says:

    Steve, this is such exciting news! Like you, my son has a “funky heart” — he has a single ventricle heart that will never be “cured.” Like you, he’s a survivor! But like you, his heart will require life-long care. It’s nice to know that if this bill gets passed, there will be more research and funds available to heart warriors like you and Alex. Let me know if there’s anything I can do to help.

  4. Fight for your rights « Adventures of a Funky Heart! Says:

    […] need to do it yourself. That’s why it’s up to those of us with Heart Defects to get the Congenital Heart Futures Act out of committee and passed. It has been laid aside as the Health Care Reform debate rages; so […]

  5. Eliza Says:

    From my experience in my masters of public health graduate program which trains you to be part of exactly these type of things, “causation” doesn’t just mean causes of the original defect – it can mean what causes people who *did* get medical intervention as a children to become sicker or less sick than others which leads to the formation of evidence-based, best practices not just for pregnant mothers, OBGYNS and babies, but for the entire age spectrum of CHD.

  6. Eliza Says:

    *To go along with the metaphor, this means the fire department comes with people to hunt down the couch that caught fire in the first place AND douse the rest of the house with giant, water-filled hoses. đŸ˜‰

    (…granted a solid evidence-base takes a while to come together, but without serious funding or at least a yearly line item, it’s nearly impossible!)

  7. What is a Health Registry? « Adventures of a Funky Heart! Says:

    […] of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on […]

  8. Heart Defects and the 2010 Midterms « Adventures of a Funky Heart! Says:

    […] news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, […]

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