Cameron Credle has been battling familial hypercholesterolemia (FH) for more than 25 years, after he found out he had the disorder when he was three years old. And while his day-to-day life is regular—he goes to work, exercises and spends time with family—his cholesterol isn’t. FH is a genetic cholesterol disorder that keeps his body from getting rid of low-density lipoproteins, also known as the bad cholesterol.

There are treatments readily available, but the one Credle was using only reduced his cholesterol by 50 percent, and he needed the treatment to reduce it even more. So when a new medication came out, called a PCSK9 inhibitor, it seemed perfect. Except, he said his insurance won’t cover it.

“This has been something I didn’t know that I would see in my lifetime,” Credle said. “This is something that gets it down to that last 50 percent to put me in a normal range. We’ve just had a heck of a time getting my insurance company to cover it, and I have really good coverage.”

William Cromwell is Credle’s doctor – a lipidologist in Raleigh. Cromwell said even though Credle has a typical insurance plan, it may not be that specific company’s fault. Cromwell has been going through a lengthy prior authorization process to get the company to cover the medicine. And he said that process isn’t the same for any two insurance companies.

“The process from the time I write the prescription to the time that we are able to get product for our patients consists of layers and layers of bureaucracy with individuals who are poorly informed and are able to kick this thing out for any number of reasons that have no basis in fact,” Cromwell said.

He said Credle’s case isn’t the only one like this he’s seen, and that some insurance companies don’t even know they can cover medication for FH, because it isn’t in their database of treatable diseases, even though it’s common.

“It’s a very common condition but it’s not often thought of when you’re thinking about common medical problems,” he said. “It occurs in we think in one in every 250 kids born in the US.”

Cromwell said after talking to numerous personnel with the insurance company, there are hopes that the PCSK9 inhibitor will finally be covered.

“We believe we have been successful,” he said. “The medical director that I most recently spoke to approved Cameron’s prescription for the second PCSK9, but even now having achieved that, it appears the company has not gotten in touch with Cameron with detail regarding his approval and how he’s going to get the medication.”

Credle said he and Cromwell are going to keep fighting for coverage of medications like PCSK9, because he’s not the only one affected by FH. He said while it’s important for him to get this medication, it’s important for others in need to have access to it too.

“There’s a solution out there,” he said. “It exists. If we figure this out and go through the right avenues, figure out the right solutions – legislative or what they may be – then we can all benefit from it.”

Credle says he’s still waiting to find out from his insurance company or from the supplier of the PCSK9 inhibitor whether his insurance is going to cover the medication.