Methuen

A Struggle to Secure Lifesaving Medication

Fourteen-month-old Charlotte Valliere was born missing a lung and has spent much of her life at the hospital. When the family's medical insurance changed, they said they had trouble getting her lifesaving medication.

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A 14-month-old baby from Methuen, Massachusetts, was allegedly being denied lifesaving medication, according to her parents and doctor.

They said CVS Caremark was not covering the otherwise costly drug.

Hours after an NBC 10 Boston inquiry to the pharmaceutical company, Charlotte Valliere’s parents were informed that CVS would now cover her medication and that their prescription would be shipped within a day.

Fourteen-month-old Charlotte was born missing a lung and has spent much of her life at the hospital. She's treated for pulmonary hypertension with a drug called Tadàlafil. But when the family's medical insurance changed, they said they had trouble getting her lifesaving medication. They said it took weeks to get it approved under the new insurance.

"It's been hard but it's worth it," Karla Valliere, Charlotte's mother, said of the fight.

The Vallieres and their pediatrician took to Twitter on Tuesday to call out CVS for its refusal to cover the medicine. The tweets went viral. Karla said on Thursday they got the call that the medication was approved.

Charlotte's pediatrician said this situation never should have happened. This is medication Charlotte has been on her whole young life.

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"If she's going to go on or off of it, it shouldn't be based upon the criteria that her pharmaceutical management company feels is appropriate, it should be upon the clinical judgment of her own medical providers that have been involved in her care," Dr. Daniel Summers said.

CVS Caremark released a statement to NBC10 Boston on the situation:

"Our highest priority is ensuring our clients’ plan members have coverage for clinically appropriate and affordable medications to treat their conditions. Because the request for coverage of this drug fell outside the FDA-approved indications and uses supported in recognized clinical literature, the request was initially denied and an appeal initiated.  As part of the appeal process, we received additional information from the doctor and the appeal for coverage was approved.  We stayed in touch with the family during this process and were pleased to inform them earlier today that the medication will be covered."

Summers estimates the out-of-pocket cost for a year's supply of the drug is around $7,000.

The Valliere family was also in touch with U.S. Congresswoman Lori Trahan. Her office responded to NBC 10 Boston’s request for comment.

“Congresswoman Trahan and her office have been in communication with Ms. Valliere about Charlotte’s case. Due to an office policy regarding ongoing constituent casework, we cannot share specific details about her request for assistance, but we will continue doing everything possible to ensure it is resolved favorably and quickly,” said Trahan’s Chief of Staff Francis Grubar.

Charlotte's parents took her to Mass General Hospital Thursday, where she underwent an echocardiogram to see if she was affected by the lapse in treatment. Doctors say she's doing fine.

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