FOR IMMEDIATE RELEASE
March 27, 2003
Contact:  Marie DesOrmeaux
(202) 225-3772
 
Congressman Ross Reintroduces Bill to Cover Medically Necessary Reconstructive Surgeries
Bill, inspired by constituent with rare congenital disease,
 mirrors effort on the state level for similar reform
 
(Washington, D.C.) Fourth District Rep. Mike Ross (D-Ark) on Thursday introduced legislation that would require insurance companies that cover surgery to cover medically necessary reconstructive surgeries for congenital defects, developmental abnormalities, trauma, infection, tumors, or disease.   The bill’s introduction comes the day before a hearing on a similar bill in the Arkansas legislature.

“Insurance companies often don’t differentiate between surgeries that are reconstructive and those that are cosmetic,” Ross said.  “Unfortunately, for those suffering from rare diseases or conditions which require rare procedures, falling into the wrong category means denial of coverage for their medical needs.” 

Ross was inspired to draft the bill by a constituent, Wendelyn Osborne.  The Arkadelphia native was the 16th person ever documented with the rare bone disease, Craniometaphyseal Dysplasia, which causes an overgrowth of her craniofacial bone that never deteriorates.  Now in her mid-thirties, Wendelyn had her first of 14 surgeries when she was 6 years old and was not expected to live to adulthood.  Her condition requires these periodic surgeries to correct the growth and abnormalities caused by the disease.  She is currently in need of another orthognathic surgery.

Unfortunately, Wendelyn has had to fight for any type of disease-related procedure as well as getting access to “qualified” physicians.  Most insurance plans do not recognize congenital conditions such as hers, and those that do generally have an age limitation.  These plans often stop covering congenital conditions once the beneficiary has passed age 21, whereas the congenital condition never goes away.  Wendelyn’s condition is rare, but her experience in seeking care is not. 

“I have fought a very hard battle and have no more avenues to take,” wrote Wendelyn in a June 2001 letter to Ross.  “At this time, my insurance policy covers congenital conditions through the age of 12.  When you are born with a congenital condition, most likely you’ll die with it.  I feel as if I’m being punished for being born with a rare disease.”

Ross has worked with Wendelyn on this bill over the past two years, offering up legislation in 2002.  Last fall she visited Washington to lobby for her cause, and she recently met with musical artist Cher about Cher's work with the Children's Craniofacial Association.  This summer, the Children’s Craniofacial Association will meet in Washington in an effort to promote the Reconstructive Surgery Act.

Wendelyn has spearheaded a campaign on the state level as well, and has worked with Arkansas State Rep. Tommy Roebuck (D-Arkadelphia) on a bill to address the need for the change in insurance companies' description of procedures.   On Friday, Wendelyn will travel to Little Rock to testify on the bill’s behalf before the House Insurance and Commerce Committee.  

 “Wendelyn suffers from a rare disease, but she joins countless others in suffering from a lack of coverage for what is medically necessary for her survival,” Ross said.  “To classify surgeries that would allow her to eat normally as ‘cosmetic’ is unacceptable.  The Reconstructive Surgery Act of 2003 will ensure that people like Wendelyn whose needs are simply misunderstood or mislabeled are taken care of.” 

The bill 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.”

Examples of medically necessary procedures that would be covered under this legislation include:  injuries from accidents, cleft lips and palates, burns, skull deformities, benign tumors, vascular lesions, missing pectoral muscles that cause chest deformities, Crouson’s syndrome (failure of the mid-face to develop normally), and others.

The Reconstructive Surgery Act of 2003 has been endorsed by the National Organization for Rare Disorders, National Foundation for Facial Reconstruction, Easter Seals, and the March of Dimes.


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