Pharmacy benefit manager denies teen's essential medication over a small age gap

    PERRY HALL, Maryland (WMAR) -- A family is warning other patients to fight for health insurance coverage after their daughter’s medication was initially denied by their benefit plan. Despite doctors deeming the treatment medically necessary, the pharmacy benefit manager denied coverage based on the patient's age.

The medication, Rinvoq, is approved for use in children as young as 2 years old, but for Milana Scaccio's condition, the medical labeling indicates it’s for patients aged 18 and older. Scaccio is 17, and without insurance, the medication at her required dose is estimated to cost around $13,000 a month.

“January 29 is when I first went into the hospital,” Milana recalled.

Not long after, she was diagnosed with severe ulcerative colitis, requiring blood transfusions during multiple hospital stays to address anemia.

“By the time she was admitted, her hemoglobin was down to five. So that's when I started getting really worried—how much more can this go on before it becomes life threatening?” said Elio Scaccio, Milana’s father.

Her doctors attempted various treatment methods, including heavy doses of steroids and Infliximab infusions, but her condition didn’t improve.

“That didn't work either, so there was nothing else approved. There was nothing else that was going to help her until the doctor tried Rinvoq,” explained Gina Piscopo, Milana’s mother.

Almost immediately, Milana and her family noticed a positive change.

“I wasn't as dizzy anymore, and just everything like felt better,” Milana shared.

Her mother added, “The first day, she walked to the elevator, and then she was able to walk totally downstairs without the wheelchair.”

But just as her health improved, the family learned that MedImpact, the pharmacy benefit manager for her insurer, denied coverage for Rinvoq.

“She's 17 and a half, and technically it was approved for 18-year-olds for her condition, for Crohn's and Colitis. So because of that six-month gap, she's in this gray area. But yet, Rinvoq is available for adolescents if you have eczema,” Elio explained.

After the initial denial, the family appealed the decision with MedImpact but faced another setback. Milana's doctors then drafted a letter justifying the necessity of the medication and filed a complaint with the Maryland Insurance Administration (MIA).

Meanwhile, Milana remained in the hospital.

“I was finally feeling a lot better than before [and] all the other times in the hospital, and then I just had to sit there, and I couldn't go home, see my friends or go to school at all,” Milana said.

“She couldn't leave. If she left, she would be right back if she didn't continue taking the medication,” her mother added.

Eventually, the family learned that their appeal would be sent to an independent review organization, marking the final stage of the appeal process. And recently, they got the news they'd been hoping for.

“It was overturned by that third party reviewer, which we're grateful for,” Elio stated.

According to the MIA's closing letter, “The Independent Review Organization’s (IRO) physician reviewer, Board Certified in Pediatric Gastroenterology, determined the medication, Rinvoq, is medically necessary for the patient.”

In 2023, 69.7 percent of carrier grievance decisions were reversed or modified in the consumer's favor, as per MIA data, but it can be a lengthy and tedious appeals process that many patients don't know about.

Now, Milana and her family are relieved they can focus on her healing and finishing high school.

“Just getting back into school and being able to hang out with my friends like I did before,” said Milana.

WMAR-2 News Mallory Sofastaii sent emails to MedImpact requesting information on the denials but received no response.

If you receive a denial from your health insurer, you can first file an internal appeal. If it's denied, you can then request a second more detailed appeal. Depending on your health insurance plan, you can then file an external appeal with the MIA or if you have a self-funded insurance plan through your employer, you can request an independent review by an external party. Your doctor may also be able to assist you with filing an appeal.