These stories come from the real people who live with a broken health care system. Some have health insurance and some do not. Many of these stories suggest potential solutions* that lead to quality, affordable health care we can count on. One thing we all agree on is that the we cannot trust the insurance industry to fix themselves. To learn more about what Health Care for America Now stands for read our Statement of Common Purpose.
We wanted to give you a chance to speak for yourself, in your own voice, about the need for Health Care for America Now. Do you have something to say? Tell us your story.
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Alison
Boynton Beach, FL
My daughter was born in September 2005 with congenital torticollis and deformational plagiocephaly (see definitions of terms at bottom). When she was 8 months old she was fitted for a cranial orthosis (helmet) that she had to wear 23 hours a day for 2 1/2 months. As an employee of the State of Florida my Blue Cross/Blue Shield medical insurance did not cover this treatment (which costs up to $2000-3000) due to the fact that it improves cranial asymmetry, which they feel is a "cosmetic outcome" (they say it improves appearance rather than function and also argue that it is not to correct a congentital condition, which is not true). Because our doctor emphasized that this treatment was necessary (and because early treatment is essential in order to prevent this condition from worsening or possibly requiring expensive surgery later on), and despite BCBSÕ initial refusal to cover the cost of FDA-approved helmet therapy, we proceeded with this prescribed non-invasive treatment, at significant financial hardship to ourselves.
The argument that there is a lack of published data proving the developmental consequences of untreated deformational plagiocephaly is particularly troubling to us. It is an ethical violation to carry out such studies because parents would not be willing to take part in a study which leaves their child untreated. Despite this fact, BCBS-FLÑ-even though they have no data supporting their positionÑ-required us to produce such data, thereby setting a standard that is unattainable. It is worth noting that, although there are no studies to show that the head shape will correct on its own, precedent has been set by a NJ court where a family won a malpractice case against their physician for not treating plagiocephaly. Furthermore, in the case of Bynum vs. Cigna (June 2002, US Court of Appeals 4th District) the court found in favor of Ms. Bynum and ruled that the treatment was not cosmetic because it "constituted treatment for a congenital birth defect and its related symptoms with the added hope that it might prevent the onset of serious abnormalities..."
After filing a claim for this treatment I received a denial. I then submitted an appeal to their medical review board providing medical documentation to show that this was indeed a necessary step in treating my daughter in order to correct this problem and prevent further long-term effects due to untreated deformational plagiocephaly. They denied the appeal stating that this treatment is specifically excluded from our contract.
The problem here is that the insurance companies are writing the rules in their favor and ignoring the recommendations of doctors, medical research and the FDA. I was always under the (mistaken) impression that as long as I was seeing an in-network physician and he/she prescribed a treatment as "medically necessary" that it would at least be partially covered by my insurance. It turns out I was wrong. Every year we pay higher deductibles, premiums and co-pays. I am one of the lucky people who actually have insurance! I am glad that I have it and I think that everyone should have it (as a right, not a privilege). I don't appreciate being ripped off by greedy insurance companies. Our health should be the primary concern, not the dividends of their shareholders and executives. The bottom line is that healthcare should not be a "business." Our system is broken and needs to be fixed.
DEFINITIONS:
"Torticollis: contracted state of the cervical muscles, producing twisting of the neck and an unnatural position of the head."
"Plagiocephaly: asymmetrically shaped cranium."
"Cranial orthosis: a medical device designed to apply pressure to the prominent regions of an infant's cranium, to improve the symmetry and/or shape the head."
*Health Care for America Now is not responsible for the content of these stories. These stories are submitted by individuals in the online audience and have been edited in some cases. Health Care For America Now does not endorse any of the solutions or policy positions suggested in the content of these stories. Health Care for America Now is a coalition of organizations that agree to the Statement of Common Purpose.
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