Indiana pharmacy steps up after 4-year-old boy with rare illness denied medication

LOUISVILLE, Ky. (WDRB) -- A 4-year-old boy with a rare illness needs medication, but his mom said southern Indiana pharmacists have been refusing to fill the prescription.

Arthur Brown appears to be a typical 4-year-old. Looking at him, most people would never know that the Jeffersonville child has endured 1,500 doctor's appointments and seen 36 different specialists.

Arthur was born with Prader-Willi syndrome, a rare genetic disorder impairing his 15th chromosomes.

Arthur Brown, a 4-year-old boy with Prader-Willi syndrome, with his family

"Our kids with Prader-Willi syndrome have a lot of issues regulating things in their brain ... the sleep and awake cycles, food and all sorts of stuff that comes from the hypothalamus," said Ashley Brown, Arthur's mother.

Brown said her son suffers from severe apnea, and after 14 sleep studies, a specialist from Riley Children's Hospital in Indianapolis prescribed him Provigil in an effort to keep his body more alert and functioning. The drug is commonly used for narcolepsy, to wake up the sensors. Some patients jokingly refers to it as Viagra for the brain.

But Brown said the reaction to that prescription was no laughing matter.

"I called around. I think it was 16 pharmacists that all told me 'no' in southern Indiana," Brown said. "That's really discouraging, because you are like, 'Where am I supposed to go? What am I supposed to do? I'm just trying to get help for my kid.'"

Chad Burks, a pharmacist with Westmoreland Pharmacy, said it's not a simple dilemma.

"Someone calls up and says, 'Hey, I need Provigil: 50 milligrams,'" he said. "Well, they're going to look at you cross-eyed, because it doesn't come 50 milligrams. It comes as a 200 milligram tablet or 100 milligram tablet. So then you might think, 'OK, I can use half of a 100 milligram tablet.' But it's not scored, which means it's not technically approved to be split. So in a regular commercial pharmacy situation, you can't get to 50 milligrams from a commercially available product."

Provigil is also a controlled substance and is not FDA approved for use in children Arthur's age, but it has been used off-label for kids with the Prader-Willi disorder. Ashley Brown said Arthur's specialist from Riley Children's even called pharmacies on his behalf explaining the disorder and the logic behind the prescription pharmacist still declined to fill the order.

"Within our professional judgement, we can say no to anything if we think it will harm the patient, if we think it's inappropriate," Burks said. "Any number of reasons we can say. 'No, I don't feel comfortable filling it.' Ultimately, it's our license on the line as well."

But by Tuesday afternoon, Arthur's situation had changed. After learning more about Arthur's case and WDRB's report, Westmoreland Pharmacy agreed to compound a lower dosage just for him. The pharmacy stepped up when other major retailers refused.

"You have to know the patients, that's part of being in front of the counter," Burks said.

Prader-Willi is most often linked to life-threatening obesity as patients never feel full due to sensory issues. Some reports suggest only one in 15,000 to 25,000 babies are born with the condition.

"There are so many of us trying to get the best care and best life for our child with this life-threatening disorder," Brown said. "Why not make it a little easier on the child and the parent?"

The Brown family has dedicated their lives to helping fund research for a cure for Prader-Willi syndrome. They formed an organization called Arthur's Angels and host fundraisers each year, with proceeds going toward One Small Step the Foundation for Prader-Willi Research.

The next event is a car show Aug. 17 from 10 a.m. to 2:30 p.m. at New Albany First Church located at 2778 Charlestown Rd. in New Albany.