The following presentation was made within the five-minute timeframe we were allowed to present a case.  Position papers and coding information were submitted prior to the meeting and within the guidelines set by the insurance company.  A two-page hand-out was also distributed prior to the presentation.  It's contents are noted below.

My daughter was present during the presentation.

My name is XXXXXX XXXXXX and this is my daughter XXXX.  XXXX was born with bilateral cleft lip and palate and has undergone extensive reconstructive surgery.

Let me begin by saying that I cannot believe that my daughter's case has come to this juncture. XXX's denial letters state that the LaForte procedure and splint would not be covered because it
is a dental procedure.  I'm sure you are all aware of Paragraph 8.5, as it should be included in XXX's case file on XXXX.

I understand the intent of the policy is to avoid frivolous surgery and unnecessary procedures.  However, my daughter's treatment does not fall into that category.  This is NOT a dental procedure, nor is it related to a dental condition.  XXXX's upper jaw is severely underdeveloped as a result of her bilateral cleft.  No amount of dental treatment will ever make my daughter's jaw grow.  The ONLY avenue of treatment to repair this anomaly is the FDA- approved LaForte procedure.

(Circulated three pictures of daughter, including her newborn picture.)

Neither is this medically-necessary surgery cosmetic in nature.  "Cosmetic" surgery is performed to alter or reshape normal structures of the body in order to improve appearance.  "Reconstructive" surgery is a surgical procedure to improve function.  Regarding denial of the splint, the request is not for non-surgical splint therapy.

The splint is medically necessary for stabilization after surgery.  It will keep the bone in place, keep food out, and work to prevent surgical site infections.  It is designed and used to immobilize and protect.


It is not too much to ask that my daughter be able to bite, chew, swallow and breathe as normally as possible.

If we were rich, perhaps we could proceed with the surgery and simply write everyone a check.

If we were poor, Medicaid would cover this procedure immediately and without question.

If we were in a second or third-world country, American organizations of volunteer surgeons and nurses such as Smile Train and Rotoplast or perhaps Operation Rainbow out of Canada would
visit our village, recognizing the medical necessity for this procedure.

(Circulated advertisement from previous day's newspaper. Smile Train was soliciting donations to perform cleft-related surgery in other countries.  Their ad included several pictures of cleft-affected children.)

It is my firm belief that we are well-justified in pushing so hard for approval of these benefits.


If XXXX were on drugs, you would pay to rehabilitate her.

If she required an alcohol recovery program, you would authorize treatment.

If she had behavioral problems, you would provide counseling for her.

Then why not this medically-necessary procedure?


HR792 Treatment of Children's Deformities Act of 2001 Sponsor: Rep Sue Kelly of New York (introduced 2/28/2001)

S.576 Reconstructive Surgery Act of 2001 Sponsor: Sen. Dianne Feinstein of California (introduced 3/20/2001)

Both pieces of legislation would provide benefits for children's congenital deformities and disorders.  Both are currently in committee.

In addition to the sponsors of these bills, I have contacted US Senators Harry Reid and John Ensign, Rep. Shelley Berkley and Senator John McCain who is an advocate as well as the parent
of a cleft-affected child.

I plan on continuing the fight to get these bills passed for as long as it takes, and well beyond the outcome of this hearing.


I asked in my letter dated November 26 that a doctor familiar with the treatment of bilateral cleft lip and palate be consulted by XXX in my daughter's case.  To date, I have not been informed that
this has been done.

I'm asking the panel tonight to vote in favor of my daughter so that we may hopefully proceed with the surgery over the holiday break.  This would allow her to miss very little if any time away from school and would set her again on an adequate treatment path.

Hand-out Page 1

From the insurance company website

http://www.(the insurance company website).com/plan/index.html

When you are ready to settle, settle for the best! In life there comes a time when you have to settle. Tickets on the 50-yard line are sold out for the big game, so you settle for what's left. The department store doesn't carry that cashmere sweater in blue, so red will have to do. But when it comes to health care coverage, are you willing to settle for anything less than what your family deserves? We invite you to take a closer look at the variety of health plan options and services XXX offers.


From The Journal of the American Medical Association (JAMA)

Article by Donald F. Phillips

A child's smile can gladden anyone's heart--or break it, if smiling is impeded by congenital facial deformities.

Plastic surgeon William P. Magee, Jr, MD, decided 18 years ago to do something about the emotional starvation, social isolation, and debilitating or life-threatening medical complications that often affect children with such disfiguring anomalies.

"It is unthinkable that any child in the world is forced to suffer from the emotional and physical trauma of deformities that can be cured with a relatively simple medical procedure," said Magee in a recent interview. As cofounder and board chair of Operation Smile, a humanitarian and medical relief organization, Magee oversees World Journey of Hope '99, the largest-ever surgical mission dedicated to correcting cleft lips, cleft palates, facial tumors, and other facial deformities in children. The group's goal this year is to transform the lives of more than 5000 children in 18 countries around the world.


During the recent ASPS Annual Scientific Meeting, representatives from a number of medical societies met to discuss this issue and the growing problem of denials of claims for facial deformities and congenital defects. Among the organizations included in the discussion with ASPS were the American Academy of Pediatrics, American Society of Maxillofacial Surgeons, American Society of Craniofacial Surgeons and American Cleft Palate Craniofacial Association.

The organizations agreed to organize a children's' deformities/ congenital defects coalition that will include medical, patient and consumer groups. The coalition's efforts will focus on public education and legislative initiatives at the state and federal levels.

"No child should have to grow up with facial disfigurement," says William Crawley, MD, an ASPS board member and current president of the American Society of Maxillofacial Surgeons.

"Working together in this coalition of physicians, our influence will be much stronger," says Dr. Crawley. "It's a matter of doing the right thing."

Hand-out Page 2

(Press Release)

Kelly-McCain Bill Requires Insurers to Cover Corrective Surgery for Child Deformities "Insurance Companies Must Be Held Accountable," says Kelly

WASHINGTON - Saying too many children are being denied insurance coverage for surgery to correct disfiguring birth defects, U.S. Rep. Sue Kelly today joined forces with Sen. John McCain
to call on Congress to pass legislation requiring insurance companies to help families pay for reconstructive surgery for child deformities.

"A child's future is more important than an insurance company's bottom line," said Kelly. "For too many children and their families, this coverage is not a luxury, it is a necessity. In too many cases,
this coverage is denied arbitrarily. Insurance companies must be held accountable."

"Children should not be forced to live the rest of their lives disfigured when a birth defect can be corrected and parents should not have to battle with insurance company bureaucrats to get their children the care they need," said Kelly today at a press conference on Capitol Hill aimed at calling attention to this problem.

The Treatment of Children's Deformities Act, introduced last year by Kelly, prohibits insurers from discriminating against children born with deformities by denying coverage of reconstructive surgery. It requires insurers to provide coverage for treatment of a child's congenital or developmental deformity, such as a cleft palate, due to trauma, infection, tumors or disease.

Many insurers refuse to pay for surgery by classifying the surgery as "cosmetic." A recent study by the American Society of Plastic Surgeons found that over half of its members have had a child patient who has been denied or has had difficulty in obtaining coverage for reconstructive surgery.

Joining Kelly at today's press conference was Senator John McCain, who has introduced the bill in the Senate, members of the American Medical Association (AMA), child patients and their parents and actor Stacy Keach. The bill has been endorsed by the AMA and the American College of Surgeons.

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Sample Presentation to Grievance Committee
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