WEST SENECA, N.Y. (WKBW) — 22-month-old Sophia Watson is in urgent need of life-saving treatment for a tumor, but an insurance dispute has left her family without coverage.
Sophia, who has neurofibromatosis type 1, has a tumor on her optic nerves that requires treatment with an oral chemotherapy drug called Mekinist.
"It is inoperable," her dad Benjamin Watson said. "We were told that it is pretty much a 100% chance that if they operate on it, she will go blind because of the placement of the ocular nerve."
Benjamin and his wife Amanda are facing a significant financial burden after they say they were denied coverage for the medication.
“We’re doing everything we can," Benjamin said. "We're going about everything the best way possible or what we think is the best way but it's difficult. It's very tough. It's very draining, mentally, physically."
Sophia’s treatment plan involves taking Mekinist once a day for two years, which has kept her tumor stable. However, due to the insurance denial, the family of five now must pay $1,800 per bottle, requiring two monthly bottles. Her dosage increases the older she gets.
The denial came after Benjamin changed jobs, which resulted in a switch in insurance providers. Since then, Anthem Blue Cross and Blue Shield, along with Express Scripts, have not provided coverage for the drug.
When I reached out to Anthem BCBS, a public relations director said the prescription benefit manager it works with, Express Scripts, was responsible for the denial.
The insurance company released the following statement:
“While Anthem provides medical benefits through the member’s employer, in this case, the employer chose to use Express Scripts as their pharmacy benefit manager. We are not affiliated with the member’s pharmacy benefit manager, nor do we have any decision-making authority in this matter. Anthem Blue Cross and Blue Shield works to ensure our members receive integrated, connected care, and we assisted the member in connecting to their correct pharmacy benefit manager for more information on the medications in question.”
Anthem Blue Cross and Blue Shield
I also reached out to Express Scripts for clarification. A customer service representative told me the company no longer has a media department but said Express Scripts follows the coverage criteria set by insurance companies and that it was the insurance company that denied coverage.
On Friday afternoon, a spokesperson for Anthem told 7 News the provider is actively working with the family, and reaching out to Express Scripts, to find a resolution that will allow Sophia to get the treatment she needs.
Sophia’s parents said Roswell Park Comprehensive Cancer Center has submitted an expedited appeal and a peer-to-peer review with Express Scripts. I reached out to Roswell Park for confirmation and am awaiting a response.
While Sophia’s family navigates the insurance challenges, they are seeking support through a GoFundMe to help cover the medication costs.
Editor's Note: An earlier version of the story attributed the denial in coverage to insurance provider Anthem BCBS, not pharmacy benefits manager Express Scripts.
