Hearts aren’t White

Here’s an article abstract from a recent issue of the journal Circulation: Cardiovascular Quality and Outcomes that compares prenatal diagnosis of Congenital Heart Disease (CHD) with socioeconomic position, their level of insurance, and even their race. Race was not a direct factor, but socioeconomic position and insurance was… the better off you are, the better the chances of a CHD being picked up during a prenatal ultrasound.

Which brings me to a subject that I’ve been wanting to discuss for a while but never felt comfortable approaching: By far, most of the CHD Survivors I have had the honor of meeting are Caucasian. And I don’t mean just more than 50%, the number has to be close to 85% and possibly higher.

One of the biggest points of Health Care Reform, in my opinion, should be equalizing care. This probably falls under the umbrella of making sure everyone is covered, but I have never heard the point expressed as I see it: A heart defect, we know, strikes 1 out of every 125 live births. It doesn’t care if you are White, Black, Asian, Native American,  rich or poor… if you are number 125, you’re it. And your parents better be able to generate a lot of resources because your treatment is going to be expensive. Not just right after birth, but throughout your lifetime.

We do need to control healthcare costs and we do need to make sure everyone is covered, and we need to make sure that everyone has a chance to get the medical care they need, no matter if they are born with a disease or acquire it later in life. Because hearts don’t have a race.

And every heart deserves to live a lifetime.

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4 Responses to “Hearts aren’t White”

  1. Linda D. Says:

    You are so right. Come to think of it, other than the doc who started the group, everyone in my CHD parent support group is caucasian. Our leader is Asian, and 1 of the kids is adopted from China. Thanks for being willing ot make this point.

  2. Karen Thurston Chavez Says:

    Amen. Broken Hearts of the Big Bend is pretty diverse, including families who are white, African American, Chinese, Hispanic, older, younger, richer, poorer … And yes, I have noticed, unfortunately, the level of care that various families receive varies. Not based on anything, however, except for where they receive their interim care. Families in our immediate area, who have financial issues, have a more difficult time receiving a higher level of interim care than those who are able to make the 2-1/2 hour trip regularly to the closest facility that has board-certified pediatric cardiologists on staff. Those who must rely on local care find themselves in emergent situations more often than those who have the means to travel whenever necessary. It’s something we hope will resolve sooner rather than later.

  3. Patients For A Moment: Vol. 1, No. 6 // Emergiblog Says:

    [...] Congenital heart disease does not discriminate, but Steve at Adventures of a Funky Heart observes that the majority of congenital heart disease survivors are caucasion. Do health care discrepancies play a role in survival? Steve looks at this very topic in Hearts Aren’t White [...]

  4. Deepti Says:

    I am Indian, and India’s huge population means automatically that there are a huge number of CHD cases everyday. I’m actually supposed to be the oldest Indian survivor of TA. In all honesty, no one can tell for sure, but it’s probably true, because health care and heart care boomed only in the late 90s here.

    When I was born with my defect in 1986, no hospital in India had ever done a Glenn Shunt or a Fontan. Even stitching up a hole in the heart was considered too risky and was too expensive for many families. In India, the tendency was (and still is, I’m willing to bet) to “just let the child go” with minimum suffering. My own parents were advised the same. They had to take me to the UK to make sure I got the operation and post-op care required.

    Today, too, in spite of the large hospitals and the amazing medical fraternity, heart care is a sadly neglected and misunderstood. It’s too expensive, for one. The poorer, rural families live on hard, physical labour – if their child is not participating in the effort, then he/she is a financial burden. How can any research be done or new methods and procedures be developed when all our major cardiologists are concentrated in a select few cities and charge way too much?

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