Georgia teen who survived brain cancer can't find needed growth hormone amid shortage

LAWRENCEVILLE, Ga. - Noah Kanakanui, now 14 and a ninth grader at Grayson High School, remembers bits and pieces of his life with brain cancer.

"I remember, like, my first big surgery," he says.

His mother, Glenna Kanakanui, says it has been six years since Noah began having severe headaches.

"One morning, he woke up and one of his eyes was facing a different direction," Kanakanui says. "So, we immediately took him to the ER, and he had an emergency MRI, where they discovered a golf ball-sized tumor attached to his brainstem that was causing the pressure and making his eyes go a different direction."

Noah Kanakanui pushed through brain surgery, proton therapy and then a year of chemotherapy.

"And, since all that treatment, he's been cancer-free, which is amazing," his mother says. "We're going on six years now, which is a big milestone."

And, having cancer has shaped Noah's life.

"I want to be a doctor," he says. "I want to be, to treat cancer and stuff, and maybe one day I could find a cure."

But his treatment has affected his growth.

"Chemotherapy and radiation not only stops the cancer cells from growing, but it also stops your other cells from growing," Glenna Kanakanui says. "So, he lost, you know, almost two years of development."

To help Noah catch up, he was prescribed human growth hormone, a daily injection.

"He started about a year and a half ago," his mother says. "He's been responding fantastically. He's grown over an inch and a half in the past eight months."

But, there is a problem, and it is a big one, Kanakanui says.

Because of a worldwide shortage of several types of growth hormone medication, the Lawrenceville family is having a hard time finding Noah's medication.

The manufacturers have blamed the shortage on manufacturing problems and an increase in demand for the medication.

Noah Kanakanui was initially prescribed Norditropin, which is manufactured by Novo Nordisk, for the first six months.

Then, his mail order pharmacy started having trouble stocking the medication, his mother says.

"They ran out of the Norditropin, and they switched to the generic, the Genotropin," she says.

After the family started having trouble finding that medication, made by Pfizer, Noah's endocrinologist, Dr. Brianna Patterson at Children's Healthcare of Atlanta, switched him to a third growth hormone drug.

"I think it's really been a cascading situation, where, basically, any of the brands can have a significant shortage issue at any given time," Dr. Patterson says.

Dr. Patterson says she hears almost daily from her patient families, who tell her they are missing doses because they are unable to find the drug they have been prescribed or have had trouble getting their insurance providers to cover the cost of switching to a new drug.

The process of getting a prescription filled for growth hormone is a lot more arduous than the average prescription for most types of health problems," Patterson explains. "The most frequent workaround we see is having to change brands frequently, and that involves a lot of communication back with your insurance companies to get prior authorization for a different brand of growth hormone," Patterson explains.

Glenna Kanakanui says she spends hours on the phone with their pharmacy and their health insurance provider, trying to get authorization to switch medications.

Finding the medication, she says, sometimes feels like a full-time job.

For Noah, who does not like needles, constantly changing medications and injection delivery systems has been difficult.

"It's uncomfortable for him," his mother says. "It's another change he has to go through. And, it's a frustrating thing to deal with."

The shortage, which has now stretched on for more than a year, comes at a critical time for kids like Kanakanui.

"Children have a limited amount of time to grow, and once their growth has stopped, we can't go back in time and make up for lost opportunity," Dr. Patterson says.

"He's a 14-year-old boy," Glenna Kanakanui says. "He's a teenager right now. He's growing and he needs this support. "

Noah Kanakanui says the struggle to find this medication he needs has been difficult.

"I just wish, you know, there wasn't such a shortage, and they could do something about it," he says.