Parents of children with cancer speak up about critical drug shortage

'I don't understand why the country doesn't prioritize it.'

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/ Source: TODAY
By Meghan Holohan

The United States is facing a shortage of a critical drug used to treat children with cancer. As parents worry they won't be able to get the life-saving treatment for their children, doctors say the shortage exposes a larger problem in this country.

When Tre Quennevill, who was almost 2 years-old, started stumbling, mom Alison Quenneville suspected something was wrong. The little boy wasn’t walking with the unsteady gait of a new walker. Instead, it looked like he couldn’t balance at all. And, his eyes looked off centered, not quite focused.

She mentioned it to his pediatrician, who referred her to a pediatric neurologist for an MRI. Quenneville tried to convince herself she was worrying over nothing.

“I was so sure he was fine and I was kind of overreacting that I was in the waiting room by myself when they found the tumor,” the 40-year-old from Saratoga Springs, Utah, told TODAY.

Tre had a large tumor nestled at the bottom of his brain in the region that controls balance. Doctors said it was medulloblastoma, a brain tumor commonly found in children, and they believed it was growing rapidly.

One of the drugs that Tre received is vincristine, which is used to treat many childhood cancers. Tre was lucky that at the time, in 2017, his "super aggressive" cancer could be treated quickly.

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“This drug, #vincristine, is used to fight SO MANY CANCERS. There is no other option,” Quenneville shared on Instagram. “There isn’t a substitute. The drug companies have not developed a new drug for medulloblastoma since the 1970s.”

Doctors agree that vincristine is essential for treating children with cancer.

"It is the most commonly used cancer drug for childhood cancer and the majority of children with cancer, with all different types of cancer, need vincristine," Dr. Peter C. Adamson, chair of the children's oncology group and professor of pediatrics at the Children's Hospital of Philadelphia and University of Pennsylvania told NBC News. "It's remarkably effective for a number of childhood cancers and it directly kills cancer cells."

The drug was once manufactured by two companies, Teva and Pfizer. In July, Teva stopped producing the drug and the Food and Drug Administration warned of a potential shortages.

"We really learned quite quickly that the problem was significant and sure enough, within days, we learned of children not being able to receive vincristine," Adamson said. "It is appalling that this drug is in short supply and the reason it's even more appalling is it's in short supply in the US. It's not in short supply in most of the rest of the world."

Pfizer said it is increasing production of vincristine in a statement shared last week with NBC News:

"Pfizer is now the only supplier of vincristine and is committed to providing this important medicine to patients. We have scaled up production to fully meet the need for vincristine over the long term. We have also expedited additional shipments of vincristine, which are now in transit to healthcare providers so they can treat patients."

Pfizer said it is expediting shipments, which are due to arrive by the end of October.

Quenneville has heard from many friends who are frightened for their children with cancer. Plus, her son will never truly be cancer free and he’ll need treatment again someday. She shared a post on Instagram and emailed Pfizer. She feels it’s important to raise awareness about childhood cancer.

“If we take away (vincristine) we don’t know what happens,” she said. “It is really scary."

Before Tre’s bout with cancer, Quenneville had no idea how few resources were devoted to childhood cancers.

“Like the rest of the world, I was clueless. I knew that kids got cancer. I saw the St. Jude commercials,” she said. “The government gives us 3.8% of the total budget for childhood cancer research, which is sickening. If our kids aren’t a priority, I feel really sad.”

The National Pediatric Cancer Foundation estimates that only 4% of the billions dedicated to cancer research is allocated to childhood cancers and that fewer than 10 drugs have been developed for cancer in children since 1980. Meanwhile it says that 43 children a day receive a cancer diagnosis. The realities of childhood cancer frustrate parents who feel desperate for healthy children.

“These are little babies we are talking about, kids who haven’t lived. Tre was 2. I don’t understand why the country doesn’t prioritize it,” Quenneville said. “Spread awareness … Get involved.”