At ACPA, we are one community driven by a shared mission: to advance lifelong, comprehensive team care for all patients with craniofacial differences. We also provide a space for families and individuals to find support, share stories, and move toward a more confident future.
ACPA is working to advocate for causes that impact individuals with cleft/craniofacial differences to both the public and policymakers within the organization’s 501(c)(3) status, and that ACPA supports the following legislation. Please contact us if you or somebody you know would like to share other legislation you believe ACPA should support.
What is ELSA?
The goal of ELSA is to provide health insurance benefits for outpatient and inpatient treatment related to any congenital or craniofacial anomaly. This bill ensures that any procedure related to restoring function or appearance due to a birth defect would be covered by insurance from birth until function is restored. Of note, ELSA has already passed in the House of Representatives, and has strong bipartisan support from 42 cosponsors in the Senate as of November 11th. Over 70 patient advocacy and health care professional organizations have also supported this legislation.
The work on this legislation originated from Senator Tammy Baldwin’s (D-WI) interaction with a family with a child who was born with Ectodermal Dysplasia. Despite having comprehensive health insurance, the family was denied coverage for extensive dental work and was forced to pay out of pocket.
Why is ELSA important?
Cleft lip and cleft palate can occur isolated or as part of a syndrome, and are among the most common facial birth defects in the United States. The impact goes beyond just the facial appearance, where studies have shown that self-esteem, academic performance and social relationships are also affected. Patients with cleft lip/palate undergo multiple reconstructive operations throughout childhood and adolescence to restore function as well as improve appearance. The lifetime cost of treating a child with an orofacial cleft approximates $100K.
Most states and health plans will include coverage for congenital anomalies. However, despite having coverage, insurance companies are still able deny claims by categorizing treatment as cosmetic or not medically necessary. This practice places the financial burden on families to make difficult decisions that impact the long term well being of their children.
ELSA works to close loopholes that allow insurance companies to deny medically and dentally necessary treatment and services for patients with various conditions. ELSA would alleviate the financial hardship for people with cleft and craniofacial anomalies and ensure they have continued support for medical and dental needs beyond childhood. While speech intervention is not specifically named in this bill, ACPA believes it could be included within several provisions of ELSA.
Importantly, ELSA includes dental, orthodontic and prosthetic support from birth until function is restored, including coverage for post-adolescence procedures. For many people with craniofacial anomalies, most surgeries occur at a young age; however, there are still procedures and surgeries that may be needed later in life, once growth is complete.
What ELSA does NOT do?
ELSA does not include cosmetic surgery performed to reshape normal structures of the body to improve appearance or self-esteem.
How can I help?
Please join us by sending letters to your Senators to get ELSA passed! We encourage you to include your personal story in our prepared letter. Additionally, you may call the office of a Senator who has not yet given their support. You may also tweet or Facebook message your Senator to encourage them to co-sponsor ELSA.
Read more about the bill:
Current Senate Co-Sponsors:
- Sen. Murkowski, Lisa [R-AK]
- Sen. Sullivan, Dan [R-AK]
- Sen. Sinema, Kyrsten [D-AZ]
- Sen. Boozman, John [R-AR]
- Sen. Bennet, Michael F. [D-CO]
- Sen. Blumenthal, Richard [D-CT]
- Sen. Murphy, Christopher [D-CT]
- Sen. Braun, Mike [R-IN]
- Sen. Ernst, Joni [R-IA]
- Sen. Grassley, Chuck [R-IA]
- Sen. Marshall, Roger [R-KS]
- Sen. Moran, Jerry [R-KS]
- Sen. Cassidy, Bill [R-LA]
- Sen. Kennedy, John [R-LA]
- Sen. Collins, Susan M. [R-ME]
- Sen. King, Angus S., Jr. [I-ME]
- Sen. Cardin, Benjamin L. [D-MD]
- Sen. Van Hollen, Chris [D-MD]
- Sen. Markey, Edward J. [D-MA]
- Sen. Warren, Elizabeth [D-MA]
- Sen. Peters, Gary C. [D-MI]
- Sen. Stabenow, Debbie [D-MI]
- Sen. Klobuchar, Amy [D-MN]
- Sen. Smith, Tina [D-MN]
- Sen. Hawley, Josh [R-MO]
- Sen. Hyde-Smith, Cindy [R-MS]
- Sen. Wicker, Roger F. [R-MS]
- Sen. Daines, Steve [R-MT]
- Sen. Fischer, Deb [R-NE]
- Sen. Shaheen, Jeanne [D-NH]
- Sen. Booker, Cory A. [D-NJ]
- Sen. Tillis, Thomas [R-NC]
- Sen. Cramer, Kevin [R-ND]
- Sen. Brown, Sherrod [D-OH]
- Sen. Merkley, Jeff [D-OR]
- Sen. Casey, Robert P., Jr. [D-PA]
- Sen. Reed, Jack [D-RI]
- Sen. Whitehouse, Sheldon [D-RI]
- Sen. Graham, Lindsey [R-SC]
- Sen. Leahy, Patrick J. [D-VT]
- Sen. Capito, Shelley Moore [R-WV]
- Sen. Barrasso, John [R-WY]
What is Ally’s Act?
Ally’s Act (H.R. 477/S.41) is a bipartisan, bicameral bill that was introduced by Congressman Joe Neguse (CO-2), alongside the co-chairs of the House Hearing Health Caucus Congressmen David B. McKinley, P.E. (WV-1) & Mike Thompson (CA-5), and Sens. Shelley Moore Capito (R-WV) & Elizabeth Warren (D-MA). The goal of Ally’s Act is to provide coverage for Osseo integrated hearing devices (OIDs), including Bone Anchored Hearing Aids (BAHA) and Cochlear Implants (CI), for children and adults birth to age 64, including services, upgrades, surgery, and associated costs that come along with these devices.
Congressman David McKinley is this bill’s original co-sponsor as well as the only member of Congress who wears a cochlear implant. Congressman McKinley’s grandson wears a bone-anchored hearing device as well, just like Ally Tumblin, the little girl this bill honors.
This important bill needs more co-sponsors, so please reach out to your representative to ask them to co-sponsor Ally’s Act!
Why is Ally’s Act important?
Over 350,000 children and adults are often overlooked and denied the right to hear because private insurers deny coverage for cochlear implants and bone anchored hearing systems, even when they are medically necessary. This can cost families anywhere from $5,000.00 to $12,000.00 and they need to be replaced on an average of every 5 years. If Ally’s Act becomes law, this bill would help hundreds of thousands of children and adults have access to life-changing treatment, allowing them to live the lives they dream, participate in the workplace and community, and enjoy a high quality of life.
These hearing devices give people their lives back. They are often the only kind of hearing devices many members in the cleft/craniofacial community are able to wear due to reasons that include missing ears, no ear canals, and, congenital hearing loss. Cochlear implants and bone-anchored hearing systems allow children and adults access to life-changing treatment, so they can thrive in the community, participate in the workplace, and enjoy a high quality of life. Ally’s Act would cost private insurers less than $0.30 cents per person/per year to cover the services under this bill.
Specifically, the bill would cover the following.
- Coverage for a BAHA or CI device.
- Upgrade replacement of these hearing devices every 5 years.
- Cover accessories including soft band headband, hard band and adhesives.
- Cover repairs for these devices
- Cover (1) hearing assessment per year
- Cover (1) preoperative assessment per year
- Cover implantation surgery
- Cover post-operative medical appointments
- Cover post-operative audiological appointments for fittings, programming, and activation
- Provide aural services related to the use of this device.
What Ally’s Act does NOT do?
Ally’s Act does not include surgery performed to reshape normal structures of the body to improve appearance or self-esteem.
How can I help?
Please join us by sending letters to your legislators to get Ally’s Act passed! We encourage you to include your personal story in our prepared letter. You may also tweet or Facebook message your members of Congress to encourage them to co-sponsor Ally’s Act.
Read more about the bill: