Legislative Alert

Contact your U.S. Representative Today
Ask them to Cosponsor

The Reconstructive Surgery Act of 2005 (HR. 4022)
Representative Mike Ross (D-AR)

Congressman Mike Ross (D-AR) has reintroduced legislation that would require insurance companies to cover medically necessary surgery for congenital defects, developmental abnormalities, trauma, infection, tumors, or disease. Since most health insurance companies do not pay for “cosmetic surgery”, it is important to define “medically necessary” surgery for serious birth defects, trauma or disease as a reimbursable medical service.

The Reconstructive Surgery Act of 2005 (HR 4022) defines medically necessary reconstructive surgery as surgery “performed to correct or repair abnormal structures of the body caused by congenital defects, developmental abnormalities, trauma, infections, tumors, or disease, to: (1) improve functions; or (2) give the patient a normal appearance, to the extent possible, in the judgment of the physician performing the surgery. It specifically excludes “cosmetic” procedures defined as “surgery that is performed to alter or reshape normal structures of the body in order to improve appearance.”

Mr. Ross was inspired to introduce this legislation on behalf of a constituent, Wendelyn Osborne of Arkadelphia, AR, who is the 16th person ever documented to be born with a rare bone disease, Craniometaphyseal Dysplasia, which causes an overgrowth of her craniofacial bone that never deteriorates. Now in her thirties, Wendelyn had her first of many surgeries when she was six years old and was not expected to live to adulthood. Her condition requires periodic surgeries to correct the growth and abnormalities caused by the disease.

Join the Entire Rare Disease Community and Take Action Today

Write a letter to your U.S. Representative – http://www.house.gov/writerep. A sample letter is below


Copy your letter to Kate Callahan at Kate.Callanan@mail.house.gov or send to Kate Callanan, Legislative Assistant, Office of the Honorable Mike - Ross, U.S. House of Representatives, Washington, DC 20515


Copy Diane Edquist Dorman at ddorman@rarediseases.org or send to Diane Edquist Dorman, NORD – Washington Office, 1050 17th Street, NW, Suite 600, Washington, DC 20036
Sample Letter

[Date]

The Honorable [first name] [last name]
U.S. House of Representatives
Washington, DC 20515

Re: The Reconstructive Surgery Act of 2005 (HR 4022)

Dear Representative [last name]:

As an individual personally affected one of the 6,000 known rare diseases that, in the aggregate, affect over 25 million Americans, I am writing to ask that you cosponsor Rep. Mike Ross’s bill, the Reconstructive Surgery Act of 2005 (HR 4002).

[Please add your personal story about why this legislation is important to you]

Failure by the health insurance industry to recognize the difference between purely cosmetic surgery and medically necessary reconstructive surgery has caused untold suffering for too many men, women and especially children affected by rare diseases, congenital defects, developmental abnormalities, trauma, infections, tumors, and disease. I urge you to cosponsor HR 4022 and protect those who may be unable to speak for themselves.

Please contact Kate Callanan in Mr. Ross’s office to cosponsor the Reconstructive Surgery Act of 2005.. She can be reached at (202) 225-3772.

I want to thank you for your consideration of this request, and I look forward to your reply.

Sincerely,

[Your name]
[Your Address]
[Your phone number]
[Your E-mail address]

Diane Edquist Dorman
Vice President, Public Policy
National Organization for Rare Disorders
1050 17th Street NW, Suite 600
Washington, DC 20036
Office/202.496.1296; Mobil/202.258.6457
Email/ddorman@rarediseases.org
Web/http://www.rarediseases.org

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