Family battles with CVS Caremark over lifesaving medication for daughter

BOSTON - Parents fighting just to get their baby's life-saving medicine say they were denied at every turn, until they shared their story online.

Now, Karla and Joshua Valliere are grateful their baby girl has another chance.

Since the day she was born, baby Charlotte has always been a fighter. The 1-year-old twin was born with one lung and given a 20% chance to survive.

"It's been hard, but it's worth it," said her mom, Karla Valliere.

She beat those odds to reunite with her sister Olivia, making national and international headlines.

"Having them together, having them smile and having them just being themselves that makes every single tear, every single hour of stress, everything else worth it," said Karla Valliere.

But now the parents have been fighting another battle to keep her alive: access to her life saving medicine.

"Everything just became a problem, everything became an issue to get the medication she needed we didn't understand why," said dad Joshua Valliere.

The family has been in a complicated bureaucratic battle with the provider CVS Caremark -- ever since they moved to Boston from San Diego in January.

They say the pharmacy kept denying the refill requests for the medicine Charlotte's been taking her entire life.

"It became not about what she needed but more we have to go through this and that and then constant denial which made no sense even to my doctors," said Joshua Valliere.

Time was ticking. Baby Charlotte had gone six days without her lifesaving medicine.

Then their pediatrician Dr. Daniel Summers intervened, calling out the company on social media. "I just thought if nothing else is going to work, I'm going to make Caremark look bad because they should," said Dr. Summers.

The company responded, saying the request was initially denied because the drug fell outside FDA- approved indications and uses in recognized clinical literature.

But after an appeal and more information from the doctor, success.

In a statement, CVS Caremark said: "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."

"You have to maintain her care carefully or else the consequences for something very adverse happening are pretty significant," said Dr. Summers.

Moving forward, baby Charlotte's family hopes the process will be less complicated for other families. So, they can focus on what matters-their little ones surviving and thriving and never giving up without a good fight.

"I will do anything for them, and I will do whatever it takes to give them the best chance of succeeding and be happy, that's my job right?" said Karla Valliere.