February 13, 2002
To:President George W. Bush
I was extremely impressed with your speech in Wisconsin on Monday concerning your health care agenda, particularly regarding affordable health care coverage for everyone.
However, I am compelled to bring to your attention a very real issue that would still leave some children without benefits to cover their most urgent and necessary medical needs.
My daughter, Erin, was born in 1987 with complete bilateral cleft lip and palate. In case you are unfamliar with the terminology, that means she was born without an upper lip and without the roof of her mouth. Additionally, part of her nose was missing.
While Erin has undergone several surgeries in her almost 15 years, she faces many more in the future. At ten weeks old, she had her initial lip repair surgery, when she weighed a mere 10 pounds. At 8-1/2 months, surgeons performed a soft palate repair. Most recently, Erin had orthognathic surgery. The surgeon broke her jaw and literally re-positioned her entire mid-face to improve functions like biting, chewing, swallowing and breathing.
She has indeed endured much more than almost anyone that I personally know, and she does it with style!
Although Erin is insured through my ex-husband's employer, the group health organization denied benefits for her orthognathic surgery scheduled for November 7, 2001. The surgery had to be cancelled, only 12 hours before we were to take her to the hospital. Their first correspondence deemed it a dental procedure and quoted a paragraph from the policy's exclusions. The surgeon wrote a compelling letter to the HMO explaining that this is a medical procedure, not a dental one, due to a congenital anomaly. I further explained the medical necessity to them, and pointed out that orthognathic surgery is not an uncommon procedure for cleft-affected adolescents, and is in fact part of a staged repair over a period of years. It is also a major milestone, paving the way for secondary repairs that are traditionally performed during the later teen years.
We were denied yet again that same month. I requested a grievance hearing, and started my research. Medical terminology, position papers, local, state and federal laws...anything to prove our case...with the help of the internet.
Luckily, my daughter's surgeon is a fine man with a true dedication to serving all his patients, including those patients from the Special Children's Cleft/Craniofacial Clinic. After battling the insurance company for nearly two months, he surprised us a few days before Christmas when we were told that he would perform the surgery immediately. He had also arranged for a colleague to perform anesthesiology services, and the CEO of a local hospital agreed to get my daughter the surgery she needed. Erin's orthognathic surgery was performed on December 26...what a blessing!
We continued to battle the insurance company, and in late January the company finally agreed, pretty much out of the blue, to cover the surgery; however, their agreement came with the understanding that they really don't cover this, but they will make a one-time exception, setting no precedent.
In short, I think we wore them down with our diligence!
Regardless of whether children have health care coverage, many companies still will not cover some treatment and reconstruction for cleft-affected patients and those afflicted with other facial abnormalities. As I am sure you are aware, Senator John McCain has long been an activist for the treatment of children's deformities, having had a similar experience to ours in his own daughter's cleft care. Additionally, Nevada Senator Harry Reid is a supporter of children's deformities legislation.
We have launched a website, cleftAdvocate, to help others fight for their rights with insurance companies and HMOs. We offer educational resources and moral support, and encourage parents to write their representatives about these health care concerns.
Sponsor: Rep. Sue W. Kelly of New York (introduced 2/28/2001)
Sponsor: Sen. Dianne Feinstein of California (introduced 3/20/2001)
Mr. President, these bills continue to be "in committee". Even if your complete plan comes to fruition, making the accessibility and affordability issues "non-issues", many insurance companies and group health organizations will choose not to cover these medically-necessary procedures for children with craniofacial birth defects.
I urge you to ask your staff to follow up on this pending legislation, and report to you its progress. I feel that with a personal push from you, and a public spotlight, these objectives can be achieved.
And the sooner, the better.
I appreciate your time and look forward to a response from your office.
How Do YOU Measure Success?