Stop Insurance Denials for Cleft & Craniofacial Patients in the United States!

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UPDATE OCTOBER 2014 - PLEASE NOTE:  The Reconstructive Surgery Act, legislation that will cover cleft/craniofacial patients of ALL ages, has not yet been re-introduced to this session of Congress.  Neither has the Children's Access to Reconstructive Evaluation & Surgery (CARES) Act, which covers patients from birth only through age 21.  Continued delays are expected due to implementation of the Affordable Care Act and the ongoing overall healthcare debate, as well as election season and the seating of the 114th Congress in January 2015.  Please sign the petition in support of eliminating healthcare disparities for cleft/craniofacial patients!  Continue to check the website for updates and new bill numbers when they become available with each new session of Congress.

Stop insurance denials for cleft/craniofacial care!  Support the Children's Access to Reconstructive Evaluation & Surgery (CARES) Act and the Reconstructive Surgery Act! For more information, visit our advocacy page at http://www.ameriface.org/advocacy.html.

For information about support and services, visit http://www.cleftadvocate.org/ and http://www.ameriface.org/

You, or someone you love, can become a craniofacial patient at any time.

An accident, an animal attack, a burn, a stroke, a disease, or the joyous birth of a child.  In a blink of an eye, life can change.

According to a report issued in late 2010 by the Centers for Disease Control (CDC), orofacial clefts remain the number one most common birth defects in the United States (http://www.cdc.gov/od/oc/media/pressrel/r060105.htm).

In addition, thousands of babies are born each year with vascular anomalies, such as venous malformations, hemangiomas and port wine stains.

Many more individuals become craniofacial patients each year due to burns, trauma and diseases like oral/head/neck cancer.

Unfortunately, there has been much documentation of families and individuals having to fight to receive the medically-necessary treatment and reconstructive surgery needed to live a healthy, normal life.

The Children's Access to Reconstructive Evaluation & Surgery (CARES), known at its introduction in 1998 as the Treatment of Children's Deformities Act, was originally introduced by Senator John McCain of Arizona and Congresswoman Sue Kelly of New York.

The Reconstructive Surgery Act was originally introduced in 1999 by Senator Diane Feinstein of California.  Congressman Mike Ross of Arkansas took up the cause beginning in 2003, expanding the verbiage in 2005 at the request of the nation's leading cleft/craniofacial advocates.

Under this type of legislation, health insurance and managed care companies will be forced to recognize that ongoing medical procedures needed by craniofacial patients are not cosmetic, but are reconstructive in nature.

While some states have laws mandating coverage for treatment and surgery for patients with craniofacial abnormalities, most of them (including the federal-level CARES Act) guarantee coverage for patients only to age 21; unfortunately, craniofacial conditions do not simply disappear when a child reaches adulthood and many patients do not even acquire their condition until adulthood.  State laws also do not address the issue of self-insured funds; this is known as the ERISA loophole.

We encourage members of Congress to research and sponsor/co-sponsor the Children's Access to Reconstructive Evaluation & Surgery (CARES) Act and/or the Reconstructive Surgery Act. This legislation is designed to protect citizens from discrimination in health care. The need for this initiative is far greater than you may think.

Along with constituent letters collected from around the country, we will submit this petition to members of Congress on both the House and Senate sides.

We look forward to finding legislators equally as dedicated as Ms. Feinstein and Mr. Ross to re-introduce The Reconstructive Surgery Act in the House and Senate.

For more information, visit our website at http://www.aica-advocates.blogspot.com/.


As your constituents, we the undersigned urge you to re-introduce, and/or sponsor/co-sponsor the Reconstructive Surgery Act and/or the Children's Access to Reconstructive Evaluation & Surgery (CARES) Act.  Supporters of this legislation reside throughout the United States and come from all walks of life and socio-economic status.

According to a report issued in late 2010 by the Centers for Disease Control and Prevention (CDC), orofacial clefts (cleft lip and/or palate) remain the number one most common birth defects in the United States (http://www.cdc.gov/Features/dsBirthDefects/).

In addition, thousands of babies are born each year with more complex and even life-threatening craniofacial conditions, and vascular anomalies, such as venous malformations, hemangiomas and port wine stains.

Many more individuals become craniofacial patients each year due to burns, trauma and diseases like oral/head/neck cancer.

Unfortunately, there has been much documentation of families and individuals having to fight to receive the medically-necessary treatment and reconstructive surgery needed to live a healthy, normal life.

Under this legislation, health insurance and managed care companies will be forced to recognize that ongoing medical procedures needed by cleft/craniofacial patients are not cosmetic, but are reconstructive in nature.

While some states have laws mandating coverage for treatment and surgery for patients with craniofacial abnormalities, most of them (including the federal-level CARES Act) guarantee coverage for patients only to age 21; unfortunately, cleft/craniofacial conditions do not simply disappear when a child reaches adulthood and many patients do not even acquire their condition until adulthood.  State laws also do not address the issue of self-insured funds; this is known as the ERISA loophole.

We encourage you to research, re-introduce, and sponsor/co-sponsor this legislation, designed to protect citizens from discrimination in health care. The need for this initiative is far greater than you may think.

We look forward to hearing from you or your health care legislative aide regarding this very important legislation.

For more information, visit our website at


http://www.ameriface.org/advocacy.html


Update #21 years ago
Eliminate healthcare disparities for the cleft/craniofacial community! Add your signature to the 8,361+ already on-file and spread the word to family, friends and via social media! Support for adequate healthcare coverage for cleft/craniofacial conditions can be voiced by patients, parents, grandparents, medical professionals, educators and the voting public! Open to all organizations and their members...partner with us to make this a reality! http://www.thepetitionsite.com/1/craniofacial/
Update #12 years ago
The fight continues! Eliminate healthcare disparities for the cleft/craniofacial community...let your voices be heard! Add your signature to the 8,000+ already on-file!

Support for adequate healthcare coverage for cleft/craniofacial conditions can be voiced by patients, parents, grandparents, medical professionals, educators and the voting public! Open to all organizations and their members...partner with us to make this a reality!

http://www.thepetitionsite.com/1/craniofacial/
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