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Over the past several years, legislations have been proposed that would require insurance companies to offer coverage for various "reconstructive" surgeries, most recently in 2003. Titled Reconstructive Surgery Act of 2003 (H.R. 1499), the bill distinguishes between "cosmetic surgeries," defined as "surgery performed to alter or reshape normal structures of the body in order to improve appearance," and "reconstructive surgeries" that either "improve functions" or "give the patient a normal appearance, to the extent possible, in the judgment of the physician performing the surgery."
In other words, the act would grant surgeons the authority to arbitrate what is normal and abnormal, and ensure that there will be funding to surgically correct "abnormalities" even if it does not improve the function of the body or the health of the child. The bill was referred to the Subcommittee on Employer-Employee Relations of the House Education and the Workforce Committee as of April 14, 2003.
Another bill related to this is the Treatment of Children's Deformities Act of 2003 (H.R. 296; S. 977). Again, in the noble cause of providing health insurance coverage for "a minor child's congenital or developmental deformity or disorder due to trauma, infection, tumor, or disease," the bill slips in the language that would require funding for healthy, functional body parts simply because they are deemed "abnormal."
While excluding "cosmetic surgery performed to reshame normal structures of the body to improve appearance or self-esteem," the bill would require coverage for surgical procedures that are "performed to approximate a normal appearance," including "procedures that do not materially affect the function of the body part being treated." Again, the line between "cosmetic surgery" and "reconstructive surgery" is defined in terms of "normal appearance," rather than based on whether or not it would address illness, pain or other medical problems. The Treatment of Children's Deformities Act has been referred to committees in both houses of Congress.
To be sure, the bill is intended to address the serious needs on the part of many people born with congenital deformities. For example, Children's Craniofacial Association, many patients with facial and head deformities have been denied insurance coverage for surgical reconstruction because it is deemed "cosmetic" by the insurance industry, despite the fact that patients and families overwhelmingly support and demand such procedure as necessary in order to live normal lives.
While it is easy to say that the discrimination facing people with craniosynostosis is a social problem and should be addressed through social solutions, but it is not easy to live that reality when you are the one suffering from the discrimination and prejudice. For one thing, the discrimination on the basis of disability is already illegal in all states, and yet people with craniosynostosis and other visible deformities are routinely discriminated against. Ultimately, we hope to create a society where people with craniosynostosis would not be discriminated with or without surgeries, but our society is not there yet. In the meantime, we must support their right to access surgical reconstruction if they choose (of course, "choice" is an elusive concept here, if the alternative is unemployment, homelessness and violent hate crimes).
What seems clear to us is that we need a better way to distinguish between "cosmetic" surgeries and "reconstructive" ones beside what's "normal" and "abnormal." While we do not feel that "reconstructive surgeries" that are designed to "approximate normal appearance" is always wrong, especially when the patient has the opportunity to provide informed consent, there needs to be a safeguard to ensure that surgeries are performed to maximize the patient's quality of life, and not to relieve parents' or society's anxieties. But how can you write that into this legislation? We do not have the answers.
Perhaps the legislation on health insurance coverage is not the right place to wage campaign against intersex genital surgeries. After all, most if not all health insurances already cover intersex surgeries anyway, and there are foundations willing to fund such surgeries in case there are no other source of funding. It is shameful that the United States still has no national healthcare system, and limiting insurance coverage for the poor is the last thing we want to spend our energy on, even if it's about intersex surgeries.
That said, we are continuously frustrated by our society's willingness to pay for "correcting" "abnormalities" of intersex genitalia, while refusing to help pay for consenting adult transsexual people's surgeries that would vastly improve their quality of life. Ideally, the role of medicine should be to improve people's quality of life, and not to arbitrate what's normal and abnormal.