Family faces staggering price tag for girl's rare medical condition: "A predatory stance on families in need"

Oregon family faces staggering medical bills

Our continuing "Bill of the Month" partnership with Kaiser Health News and NPR examines unexpected medical costs.   

An Oregon father noticed that his daughter "was developing a lot faster than what seemed appropriate" in the summer of 2019. He was stunned to learn the medication needed to treat her rare condition cost a whopping eight times more for children than for adults.

Sudeep and Sara Taksali realized their daughter was going through "changes that you typically see for an older child," and at 8 years old, she was already taller than her 12-year-old brother. Doctors diagnosed the girl with central precocious puberty, a rare medical condition that causes early puberty and can stunt natural growth into adulthood.

A proven treatment they recommended was an implant placed under the skin that released daily doses of a hormone blocker.

"Some form of medication would be given to basically stop the hormone pulsing that was causing her to have early puberty... basically kind of turning off that switch," said Taksali, who is also a practicing physician. 

He researched the two implants available on the market: Supprelin LA and Vantas.

Supprelin LA has a staggering price tag of $37,300 per year, and is the only option FDA-approved specifically for children with central precocious puberty. Vantas, the exact same hormone blocker with slightly lower doses, is listed at $4,400. However, it is only approved to treat late-stage prostate cancer.

Both drugs are manufactured by Endo Pharmaceuticals, which said in a statement that "they are FDA approved for two unique indications… appropriate only for that particular patient population."

Taksali attempted to get his daughter the less expensive option, but his insurer, UnitedHealthcare, would only approve the drug costing over $37,000 at first. Doctors who spoke to CBS News said the cheaper alternative was just as effective in children.

In a statement to CBS News, health insurance giant UnitedHealth said: "Our coverage policies are aligned with FDA regulations and Vantas is not FDA approved to treat central precocious puberty... when the provider expressed concern over the cost of Supprelin LA, we worked with them to allow for coverage of Vantas."

"The family ultimately paid approximately $12,000 for the implant which they were told with all fees would have been closer to $100,000 if  they had used the approved pediatric version. Even though they are basically the same," according to Dr. Elisabeth Rosenthal, editor-in-chief of Kaiser Health News.  

For Sundeep Taksali, the problem goes far beyond money.

"I feel like the patient consumer is completely blind," he said. "You're taking a predatory stance on families in need."