Doctors face challenges getting clinical trials for children with cancerPosted: Updated:
Tammie Ponyah will never forget the day her daughter, Dareece, was diagnosed with cancer.
“She has neuroblastoma cancer,” Ponyah explains. “You don't know what to feel; you just break down. You are asking a bunch of questions, about why she got it, how she got it.”
That is something Dr. Jessica Boklan, MD, at Phoenix Children’s Hospital hears a lot. “That is a question the families always have for us, you know why did this happen.”
Dr. Boklan says doctors do not have a clear answer about why more than 12,000 kids per year get cancer, but, they do have a growing message of hope.
”The good part of it is, we cure more than three-quarters of the kids with cancer. And for the most common form of leukemia, we cure 90 percent of those patients, which is actually one of the great stories in medicine. It was a very different story 30 years ago.”
For Dareece, hope came in a clinical trial, one of nearly 150 underway at PCH. “So right now she is doing a treatment called antibody,” explains Ponyah. Dr. Boklan says, “It has been shown that kids who enroll in clinical trials overall do better.”
Despite that evidence, Boklan says getting those valuable trials for kids face several obstacles.
“Because one of the challenges is getting pharmaceutical companies to do studies in children.”
And because there are fewer pediatric cases, and less financial motive, doctors often have to extrapolate data from adult trials.
“Children’s cancers are different; they react differently. Therefore, it is really important to do the trials in the children as well.” And there is another obstacle, she adds. “There are also challenges in federal funding, because federal funding for cancer research is going down across the board and keeps getting cut.”
The result? “There are certainly trials we are not able to participate or even do for a possible lack of funding,” Dr. Boklan explains.
She says we can all speak up about funding to elected officials. “I think if people really knew about the funding issue they would be out there being active about it,” giving a voice to kids like Dareece, who are locked in the fight of their lives. “We are really proud of her; she fought this far and still going to keep fighting,” says Ponyah.
Dr. Boklan says another way people can help is by giving. Money raised through charity funds many resources around trials.
And Grand Canyon University is making that part easy, with their “Run to Fight Children’s Cancer.” They have a 10K run, 5K run/walk and Cancer Survivors Walk. March 11, 2017 at Grand Canyon University.
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