United States. Many would have you believe these conditions are health concerns only in developing countries...but nothing could be further from the truth.
The Face of Change is a multi-faceted program, developed by AmeriFace staff and member families over the past several years. The Face of Change is a state of mind. It's about...
- Changing attitudes, both within and outside the community of those with facial differences.
- Acceptance, not tolerance.
- Educating patients and families about the various conditions represented within the community.
- Working with like-minded organizations as well as government and community-based entities to ensure the multi-faceted needs of patients and families are met.
- Educating medical and education professionals about what patients and families require to ensure best outcomes.
- Facilitating care for those who are uninsured or underinsured; patients who "fall through the cracks."
The goal of The Face of Change Initiative is to facilitate at least one pro bono medical treatment for cleft/craniofacial patients in each of the 50 states each year - and we'll grow from there. Here's how you can help...
GET THE FACTS
What is a cleft?
A cleft is a hole or notch in the lip, palate (roof of the mouth), alveolar ridge (gumline) or another body part, such as the chin, cheek or even the eye. An orofacial cleft occurs when bone and tissue do not come together normally during the first few weeks of pregnancy. The most common of these conditions is cleft lip and/or palate.
How common is cleft lip and/or palate in the United States?
The most recent statistics reveal approximately one in every 600 infants in the United States is born with a cleft lip and/or palate. Those of Native American, Asian and Hispanic ancestry are more likely to have a child with a cleft (about one in 500 births). The rate of occurrence for African Americans is about one in 1,000. Some cleft/craniofacial conditions run in families, while others cannot be explained (i.e., no family history, no known environmental factor). To learn more about clefts, visit our website at cleftAdvocate.org.
How many surgeries are required?
That depends. A cleft lip can occur alone or in conjunction with a cleft palate. Clefts can be unilateral (one side) or bilateral (both sides), complete or incomplete. Some clefts involve other areas of the craniofacial structure. There are also very complicated craniofacial syndromes (e.g., Crouzon, Goldenhar, Apert and Treacher Collins syndromes) requiring more extensive reconstructive surgery and treatment. These varying degrees will be the deciding factor in considering what type of surgery a child may have and at what intervals.
Cleft/craniofacial care for congenital anomalies can continue well into the adult years, and often throughout a patient's lifetime. Some facial differences are acquired due to trauma, burns and diseases like oral/head/neck cancer. To learn more about these conditions, visit our website a ameriface.org.
Where do patients receive care?
Throughout the United States there are a number of cleft/craniofacial teams dedicated to treating these patients. As an organization, we always refer families to the American Cleft Palate-Craniofacial Association (ACPA) database of teams. Some teams are focused on cleft lip/palate reconstruction alone, while others are registered craniofacial teams. Interdisciplinary team care and the specific timing of treatment and surgery are very important factors in successful outcomes.
Doesn't insurance cover reconstructive surgery and other treatment and therapies?
We wish. Some patients and families have no insurance at all, some are underinsured, and others have what was thought to be comprehensive coverage only to find over the years the incredible costs of deductibles, co-pays and surgery/treatment not covered by their plan results in extreme financial hardship. Difficult choices must be made, and some families opt to not follow through with surgery, speech therapy and other treatment for lack of medical coverage and/or the funds to pay for it.
Another problem is when insurance and managed care companies deny treatment deeming it dental or cosmetic in nature. Our organization guides families through the appeals process, a lengthy and tiring process of proving medical necessity. Some states have laws guaranteeing coverage for cleft/craniofacial conditions, but most do not. Even then, there are loopholes in federal law that make it possible for self-insured funds to bypass those laws. Patients often suffer delays in treatment or forego treatment altogether.
What about the organizations I've seen on television...the ones sending doctors to other countries to perform these types of surgeries? Don't they help these patients?
There are several wonderful organizations doing great work around the world; however, you might be surprised to learn their focus is almost exclusively on treating these conditions in other countries, and not here in the United States.
We don't discount these good works, but we do believe there is plenty to do right here at home, as well.
While there are some organizations and many surgeons and other medical professionals who do perform charitable work for American patients, it's not the norm. We're not sure if that's because there's more media attention when doctors travel to developing countries to do this work, or if surgeons and the general public believe that since we have access to the best healthcare in the world, it is attainable for everyone. Clearly, that's a myth.
How can I help?
And keep watching our websites for more developments!