Imagine being told your loved one has cancer. Then the next thing your doctor says is that the lifesaving drug needed is not available.
That's what a Bay area family is experiencing right now. Avalynn Luciano is just 2 years old. Her energy keeps her mom busy.
“We do this every time we come in sit here and play," says Alyssa Luciano, Avalynn's mom.
Nothing stops Ava's spunky attitude.
Not even her chemotherapy appointments at Johns Hopkins All Children's Hospital.
"It's our day. We've adapted. We have good days. We have bad days," says Luciano.
Ava was diagnosed with leukemia in January.
“Most devastating day of your entire life," says Luciano.
And while the past few months have been tough, the toddler's mom says recently they've been even tougher.
“I was angry. I was terrified. I don't understand," says Luciano.
Luciano was told the drug Ava needs for chemotherapy, Erwinaze, was not available. It's one of many drugs on the critical drug shortage list of the Food and Drug Administration.
"I don't understand. In 2106 when we have great insurance, how there can be a shortage of key component of leukemia cancer drug so many kids are dependent of," says Luciano.
Oncologist Dr. Gregory Hale says it's unacceptable.
"This is only the most-recent drug. It's not the only oncology drug that's been hurt by a shortage," says Hale.
He says this highlights the need for pharmacies to have a contingency plan.
"FDA is well aware of it," says Hale.
Now, more than 3 weeks later, the hospital did receive the drug Ava had been waiting for but her mom worries it won't be around the next time her 2-year-old needs it.
'This isn't the first time it's happened and I know it won’t be the last," says Luciano.
Hale says the best thing parents can do for their child is be an advocate. Call the pharmaceutical companies themselves, sometimes they have more clout than the doctors.