Guarantee Coverage for Life-Changing Surgeries for Children with Rare Conditions
Guarantee Coverage for Life-Changing Surgeries for Children with Rare Conditions
The Issue
No parent should have to drain their savings, borrow from family, or cash out retirement funds to give their child the medical care they need to live a healthy life.
But that’s exactly what families across the country are being forced to do — especially those with children born with rare congenital conditions, like microtia, that require complex reconstructive surgery.
When 8-year-old Olivia Olson was denied coverage for ear reconstruction surgery, her parents fought through endless appeals from their insurer, Anthem Blue Cross and Blue Shield, only to be told no qualified doctor was available in-network.
They borrowed, fundraised, and withdrew from their 401(k) — and only at the last minute did Anthem agree to cover her care. Olivia’s case made national news, but her family’s story isn’t unique.
Specialists report that denials for pediatric surgeries treating rare conditions are on the rise — even when no in-network provider exists and the procedure is medically necessary. These insurance barriers delay treatment, harm children’s well-being, and push families into financial crisis.
We call on:
- The U.S. Department of Health and Human Services (HHS) to require all insurers to cover out-of-network care for medically necessary surgeries when no qualified in-network specialist exists.
- Congress to pass legislation ensuring that reconstructive surgeries for rare congenital conditions are always treated as essential medical care, not cosmetic or elective procedures.
- State insurance commissioners to strengthen oversight of denials and increase transparency by publishing data on pediatric coverage appeals.
Every child deserves access to the care that lets them grow, thrive, and live without pain or stigma — regardless of how rare their condition is or where their doctor practices.
Families shouldn’t have to fight their insurance company to give their child a chance at a normal life.
Sign to demand a national policy guaranteeing full coverage for life-changing surgeries for children with rare medical conditions.
Photo: NBC Nightly News
311
The Issue
No parent should have to drain their savings, borrow from family, or cash out retirement funds to give their child the medical care they need to live a healthy life.
But that’s exactly what families across the country are being forced to do — especially those with children born with rare congenital conditions, like microtia, that require complex reconstructive surgery.
When 8-year-old Olivia Olson was denied coverage for ear reconstruction surgery, her parents fought through endless appeals from their insurer, Anthem Blue Cross and Blue Shield, only to be told no qualified doctor was available in-network.
They borrowed, fundraised, and withdrew from their 401(k) — and only at the last minute did Anthem agree to cover her care. Olivia’s case made national news, but her family’s story isn’t unique.
Specialists report that denials for pediatric surgeries treating rare conditions are on the rise — even when no in-network provider exists and the procedure is medically necessary. These insurance barriers delay treatment, harm children’s well-being, and push families into financial crisis.
We call on:
- The U.S. Department of Health and Human Services (HHS) to require all insurers to cover out-of-network care for medically necessary surgeries when no qualified in-network specialist exists.
- Congress to pass legislation ensuring that reconstructive surgeries for rare congenital conditions are always treated as essential medical care, not cosmetic or elective procedures.
- State insurance commissioners to strengthen oversight of denials and increase transparency by publishing data on pediatric coverage appeals.
Every child deserves access to the care that lets them grow, thrive, and live without pain or stigma — regardless of how rare their condition is or where their doctor practices.
Families shouldn’t have to fight their insurance company to give their child a chance at a normal life.
Sign to demand a national policy guaranteeing full coverage for life-changing surgeries for children with rare medical conditions.
Photo: NBC Nightly News
311
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Petition created on November 6, 2025