American policy changes mean that Canadian children with cancer lose access to clinical trials

Canadian researchers say they had to stop offering cancer children in certain clinical trials due to funding and policy changes in the United States.

The US government interrupts the financing of certain pediatric clinical trials outside the United States, and does not renew the financing of the pediatric Brain Tumor Consortium, a network of experts that conduct clinical trials and focuses on improving treatments for brain tumors.

The only Canadian network on the network is at Sick Kids Hospital in Toronto.

Dr. Jim Whitlock, President of the C17 Council representing Canadian Pediatric Cancer Programs and Head of the Hematology / Oncology Division in sick children, said they had to stop registering new patients in three clinical trials due to the change. Current patients can continue to receive treatments.

Look | What cuts mean for Canadian research – and children:

American financing cuts have closed Canadian children from brain cancer trials

The American government does not renew the funding of the Pediatric Brain Tumor Consortium, a network of experts focused on improving treatment for brain tumors, and the Sickkids Hospital in Toronto had to stop registering for children in certain new trials.

“These are some of the most promising therapies for children with these particular diseases, and there are really no equivalent promise studies that we have access,” said Whitlock.

The National United States Institutes of Health, the responsible agency, said that consortium work will move to another network which also has sites in Canada-but faces a freeze on the financing of tests outside the United States

This network, the network of clinical trials in the early pediatric phase (PEP-CTN), has two Canadian sites, one at Sick Kids and another at the Chu Sainte-Justine children’s hospital in Montreal.

“This change is worrying,” said Dr. Thai Hoa Tran, PEP-CTN medical director in Canada and a pediatric oncologist at Ste-Justine.

Tran says that two Canadian clinical trials for pediatric cancers have ceased to register patients due to the frost.

“The message we received is that registration has stopped for Canadian children,” said Tran.

In a statement to CBC News, the president of PEP-CTN, Elizabeth Fox, said that the network had learned in August that its overall funding continued, the funding of non-American sites was pending and that the registration of new patients outside the United States has been interrupted.

Clinical trials can be the last option

Child cancer is rare, with around 1,000 children under the age of 15 Diagnosed in Canada Each year. Although most respond well to the treatment, not everyone does. In these cases, clinical trials can be a final option, explains Dr. Sheila Singh, a pediatric neurosurgeon at McMaster University.

“Very often, with pediatric brain cancer, we come to a point where it is no longer treatable by standard therapeutic methods and the only hope for these children is to seek experimental therapy,” she said.

Clinical trials are for the most difficult cases to treat, so the number of children affected is low, but Singh says that loss of access to trials always represents a big loss for potential patients and for future research.

“We actually had two recently patients who had difficult to treat and refractory brain cancers who could have been eligible for one of these trials,” she said.

“But now these tests have been closed, and we cannot therefore offer these promising and promising experimental therapy options.”

The patient’s prospect

Regarding cases of pediatric cancer, no decision is easy for parents, explains Keith McIntosh, president of AC2ORN, a advocacy group for families of children with cancer.

When McIntosh’s son received a diagnosis of brain cancer at the age of nine, he underwent surgery, radiotherapy and chemotherapy. He is now 17 years old and began to finish his secondary studies in Ottawa.

After treatment, he also participated in a clinical trial, testing a medication to help the brain recover.

McIntosh says he is worried that other children lose access to similar opportunities.

“Lose any option that offers an opportunity for a remedy or a significant advantage … maybe devastating,” he said.

The parents of Emmett Doolan, three, learned that she had an aggressive brain tumor a few days after her birth.

She started chemotherapy at three weeks and shortly after, joined a clinical trial at the British Columbia Children’s Hospital for treatment targeting her type of specific tumor. The oral administration of the drug allowed him to be treated in his community of origin of the village of Kitamaat.

“This is the best thing that has happened to her,” said Emmett’s mother Lena Dolan.

“With all the hard side effects with chemo, I don’t think it would have lasted so long,” she said.

Canada should increase capacity

Given the financing and current policy changes in American health care as part of the Trump administration, researchers say that Canada should increase its ability to carry out more clinical trials here.

“We need our federal government to help decompose barriers that hinder effective driving of clinical trials in Canada,” said Dr. PJ Devereaux, cardiologist and professor at McMaster University.

“We are a very complicated and expensive place to do research,” said Kathy Brodeur-Robb, executive director of C17 Council.

She says that this country must position itself to be less dependent on the United States

“Canada needs to come together.”

Canadian Health Research Institutes said in a statement that he had recognized “with recent funding and policy changes in the United States, this was a difficult and disturbing moment for the research community”, and said it was trying to assess the full impact of changes.

The NIH said it would work to find ways for Canadian institutions to register for clinical trials in the future, once the transition is completed.