René Marsh is a CNN national correspondent. The opinions expressed in this commentary are solely her own. View more opinion articles on CNN.
I think about what's unraveling in the world outside while I sit in the hospital room that my 22-month-old son and I have called "home" for about six months. As a mother who is watching her toddler fight brain cancer, I have had to confront a sad realization. Vulnerable children, like the ones I see here on the pediatric oncology floor every day, may become collateral damage of this pandemic without ever contracting the virus.
Despite the Covid-19 pandemic, cancer has not disappeared. Children are being diagnosed every day and some parents are receiving the devastating news that their child's cancer has returned. For six months, MRI scans assured me and my husband that our son was in remission. He even rang the bell symbolizing his last chemo treatment. But in November we were blindsided -- the cancer was back, and it had spread.
This news had come after two cycles of chemo in the hospital, a cocktail of five potent chemotherapy drugs, one of which his doctors suspect nearly killed him. The toxicity from the drug caused him to go into cardiac arrest. He was on life support for six days before being put on a daily, low-dose, at-home regimen of six chemo drugs for six months.
Pediatric cancer is a white-knuckle journey. The mountains we climb and the valleys we visit as parents of these little warriors fighting this terrible disease illustrate the inadequacies in the treatments and knowledge about these cancers -- and Covid- 19 only exacerbates that. The need for new, more effective and less toxic drugs is urgent. To have a child with cancer is the deepest pain and torture any person can endure. But I believe collectively as a nation we can and should want to spare others from this pain. We can start by finding a worthy pediatric cancer organization to donate to this World Cancer Day on February 4.
The pandemic has forced pediatric cancer research labs to limit the number of workers on site, delaying many studies. Dwindling funding has also stymied critical research. I worry about the unintended consequences this pandemic will have on potential lifesaving pediatric cancer research and how that may affect survivability of some childhood cancers for years to come. All parents who watch their child battle cancer share a hope that science will catch up to this deadly disease with more effective and less toxic treatments. That hope is being challenged in the face of an additional public health crisis.
In 2020, an estimated 16,850 children were diagnosed with cancer and about 1,730 died according to National Cancer Institute estimates.
Cancer is the number one cause of death by disease in children after infancy, yet the US only spends 4% of its annual budget for cancer research on pediatric cancer. Think about that for a moment. The number one disease killing children in our country receives just 4% of the billions of dollars the US government spends on cancer research each year.
The funding disparity is often justified because childhood cancer is less common than adult cancers. One example of how this disparity plays out in real life is in drug development. According to the Pediatric Brain Tumor Foundation, the FDA approved 11 oncology drugs for adults in 2019 but a new drug has never been developed and approved specifically for pediatric brain cancer, the deadliest form of childhood cancer.
The Covid-19 pandemic has made the need for research funding for pediatric cancer more dire.
Because of the small amount of funding pediatric cancer researchers receive from the federal government, progress relies heavily on funds from philanthropic organizations and those donations have sharply declined during the pandemic.
Dr. Doug Hawkins, a clinician at Seattle Children's hospital and chair of the Children's Oncology Group tells me there is enormous concern about the research not covered by the federal government's 4%. "The hard reality is we will be forced to choose some clinical trials over others. This means that we will have to turn our backs on some types of childhood cancers because they are too rare or not as high a priority." The Children's Oncology Group, the largest conglomerate of childhood cancer experts from children's hospitals, universities and cancer centers across North America, Europe, Australia and New Zealand, has not canceled or suspended any current clinical trials but the pandemic has slowed progress in activating new trials.
It's basic math. The decline in donations will force cancer families like mine and pediatric oncologists to accept the status quo -- and that's scary.
Hawkins shares my fear. "Approximately 80% of children diagnosed with cancer will survive for at least five years. That means one in five will die within five years of diagnosis. Those who survive five years may not survive 10 years or may have serious life altering side effects from their treatments. The status quo is not acceptable. Only research can improve survivability, but research and development of effective pediatric cancer treatments relies on funding."
On top of dwindling funds, five research labs that represent 19.2%. of all of the Children's Oncology Group's work studying specimens and tumor tissue have suspended activity and have been unable to accept pediatric brain tumor specimens for approved research studies since March, says Hawkins. "Halting almost one out of five research projects is huge. If we slow our clinical trials or laboratory work to investigate the biology of pediatric cancer, we will not improve the cure rate."
This is especially pressing for cancers with inferior cure rates. Dr. Annie Huang, a pediatric neuro-oncologist at The Hospital for Sick Children in Toronto, is a leading researcher in rare pediatric brain tumors. Due to Covid-19 restrictions, Huang's lab was forced to shut down for three months. It has since reopened, but only with 60% staffing to allow for social distancing. Huang works closely with US pediatric oncologists, researchers and hospitals, and much of her research has been used in the development of clinical trials.
Huang has been studying a rare brain tumor known as ETMR for more than 20 years. She along with other researchers have collected data from more than 200 pediatric cancer patients.
"You can't understand which treatments are most effective until you have all of this information in one place and analyze it," Huang tells me. The pandemic disrupted all of this work for months. When all was said and done, what should have taken three to four months took about a year. Huang is also experiencing delays in receiving animal deliveries like mice for experiments testing the efficacy of new potential therapies.
In short, this pandemic has the ability to impact pediatric cancer patients for years to come. The exact long-term impact is hard to predict but even the slightest loss of progress towards a cure will cost lives. These children are our future. They deserve more than 4% and we must protect them from becoming collateral damage of this pandemic.