Tuesday, June 24, 2003 | 11:08 a.m.
In 2001, Debbie Oliver, a Las Vegas mother of six, fought for four months for just one of the facial surgeries her daughter Erin needed to help her eat, breath and swallow.
While struggling through the six pounds of paperwork and the uphill battle to get her health insurance provider to approve the surgery to correct her daughter's cleft lip and cleft palate, Oliver vowed to do everything she could to try to help the many other parents whose children have birth anomalies similar to Erin's.
Clefts are the fourth most common birth defect in the United States and occur in one of every 700 births.
From her northwest Las Vegas home, Oliver's advocacy website has grown into Cleft Advocate Inc., a national organization. And on Wednesday Oliver will be in the nation's capital urging lawmakers to support legislation that would require insurance companies and HMOs to unconditionally cover the surgeries needed by people with cleft palates, cleft lips and other craniofacial problems.
Some states have laws that force coverage of clefts and other craniofacial abnormalities, but many others, including Nevada, do not, Oliver said.
Insurance companies sometimes do not cover cleft surgeries because they are seen as cosmetic and dental in nature, but in fact the surgeries are necessary for these children to function normally, Oliver said.
Many children with a cleft lip or palate are treated by an interdisciplinary medical team consisting of a reconstructive surgeon,an oral maxillofacial surgeon, speech therapists, and an adiologist.
Oliver's daughter, Erin, was born without an upper lip or roof of her mouth and has needed more than 12 reconstructive surgeries, Oliver said. Among other things, Erin had to have her jaw broken from her cheekbones to her tear ducts in order to grow about half and inch of bone, her mother said.
Since Erin's birth Oliver has been battling with her health insurance companies to cover the expensive surgeries which can range from $20,000 to $40,000 each.
Jeff Moxley, Erin's oral maxillofacial surgeon said children with a cleft lip or palate may require five to six surgeries and face difficulties in speech, eating, hearing and affected facial growth.
Moxley's experience with health insurers has varied greatly, he said.
"Some will cover everything, no questions asked; others don't seem to care," Moxley said.
He recalled one conversation that took half an hour in which he had to convince the insurer that the surgery was not cosmetic or dental.
"Cosmetic and dental issues are just a component of the overall problem," Moxley said.
Armed with her frustration and knowledge of how the insurance company will deal with a cleft surgery Oliver began www.cleftadvocate.org to aid other Las Vegas families, she said. Her site supplied a sample appeal letter and instructions on how to present to an insurance grievance committee.
Oliver soon began receiving e-mails and phone calls from people across the country.
"That's when I realized it's not an isolated incident, to one insurer or geographic region," Oliver said.
The small website soon became an organization whose "mission is to educate and empower families, and provide the tools they need to secure timely insurance approvals and payments," Oliver said.
Her organization, Cleft Advocate, has teamed up with the Children's Craniofacial Association and will present at a Congressional Panel Wednesday in order to find support for the Reconstructive Surgery Act of 2003 (HR 1499). Authored by Congressman Mike Ross, D-Ark., the act will require health insurers and HMOs to cover all cleft and craniofacial surgeries, Oliver said in a statement.
Advocates of the HR 1499 are looking for a national standard for this type of health coverage, Oliver said. Thirteen states other than Nevada currently have some sort of laws regarding cleft coverage but they are haphazard, Oliver said.
Reconstructive surgeries are typically staged by age, Moxley said. Dealing with insurance company red tape can hinder a child's progress, Oliver added.
"HMOs and insurers are standing in the way of proper care," Oliver said.
This is not the first time legislation of this type has been before Congress, Oliver said. Sen. Harry Reid, D-Nev., previously co-sponsored a similar Senate bill but it never made it to the floor for a vote.
"(Sen. Reid) feels its disgraceful for insurance companies to think these procedures are only cosmetic," Reid's press secretary Tessa Hafen said.
This time around advocates are trying to gain enough support to "keep the issue in the limelight" she added.
While in Washington, Oliver is to meet with U.S. Rep. Shelly Berkley, D-Nev., and Sen. John Ensign, R.-Nev., to urge them to support the legislation. As a member of the Senate Committee on Health, Education, Labor and Pensions, Ensign could play a key role in pushing forward the Senate version, the Treatment of Children's Deformities Act, S977, which would cover speech therapy, hearing aids and pre-surgery orthodontics in addition to surgery.
Ensign's press secretary Jack Finn said he could not comment yet on whether or not the Ensign will support S977 because Ensign has not yet fully reviewed the legislation but he will discuss it with Oliver.
David Cherry, Berkley's spokesman, said this morning that Berkley's name will be added to the list of nine co-sponsors for HR 1499.
Cherry said the bill still has a long way to go but there is "a strong case to be made" in favor of the bill.
"You can see the need for it at a national level," Cherry said.
When they return from the capital, Erin will undergo two more surgeries, a lip reconstruction in July and a nose reconstruction in August, but both have yet to be approved by Oliver's insurance company, she said.
In the meantime, Oliver, who is a stay-at-home mom, has turned her advocacy work into a 40-hour-a-week job, keeping up the website and speaking to other families. She sees the long road ahead and hopes Wednesday's meeting will round up some more support for her fight.
"We're not professional lobbyists," she said. "We're just folks."
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