The day after Christmas in 1989, Dr. Gregory Aune was diagnosed with Hodkin’s Lymphona at the age of 16. Nearly 30 years later in his San Antonio office, he recalled with vivid detail the shock he felt when the doctors told him the diagnosis.
At the time, treatment options for Hodgkin’s Lymphoma yielded an 80 percent success rate. Aune’s cancer responded well to radiation and chemotherapy treatments, so he had good reason to believe he would recover.
Aune said he feels fortunate to have survived his diagnosis, but his experience “was not pleasant.” Throughout the course of his year-long treatment, he was prescribed eight different oral medications and nine weeks of radiation therapy. He lost 70 pounds.
“There weren’t many days where I thought I was going to die,” said Aune, now a pediatric oncologist and researcher with Greehey Children’s Cancer Research Institute at UT Health San Antonio.
“The treatments were physically debilitating– but the idea was that I was going to get through it and everything would return to normal.”
Aune beat his childhood cancer diagnosis, but the experience swiftly changed the trajectory of his life, he said. It hardly “returned to normal.”
The once-aspiring football coach with dreams of winning a Superbowl Championship became interested in medicine and science as a result of the time he spent in hospitals receiving treatment. He enrolled in a pre-med program at Pacific Lutheran University in Tacoma, Washington, with the long-term goal of improving methods of treating childhood cancer.
As a member of the advocacy group Alliance for Childhood Cancer, he lobbied for the passage of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, which aims to expand research into childhood cancer, help improve efforts to identify the disease, and work to enhance the quality of life for survivors.
The STAR Act, signed into law by President Donald Trump on Wednesday, June 6, funds the creation of a national childhood cancer registry and increase funding for pilot programs that develop or study models for caring for childhood cancer survivors throughout their lives.
In Aune’s fourth floor office at the Greehey Children’s Cancer Research Institute, he told the Rivard Report that much of his time as a cancer patient was spent questioning why the best means to treat cancer is toxic poison.
Radiation and chemotherapy drugs, which have been used since the 1950s, use powerful chemicals to kill cancer cells and stop them from reproducing and spreading throughout the body. The catch is they can also destroy healthy cells along the way, leaving patients susceptible to a myriad of long-term health issues including other cancers.
“The toxicity of the treatment has hung with me,” Aune said.
In the decades following his treatment, Aune experienced many late effects from the medication, including infertility, stroke, multiple skin cancers, and a life-threatening heart disease that resulted in open-heart surgery. Doctors replaced three valves in that were more than 95 percent blocked.
In his research lab at UT Health, Aune works to develop animal models relevant to the trajectory of a childhood cancer survivor in order to study the tumor response to certain medications.
“If we know 20-25 percent of survivors are at risk to develop heart failure, we have to develop strategies to prevent that from happening,” he said.
The mice used in the lab have neither tumors nor cancer. Aune is studying how the immune system and tissue within a healthy animal respond to certain medications to determine how a person might be impacted by pediatric cancer treatments.
“Putting harsh chemicals into one’s body to kill a cancer cell is what our country has right now,” said David Frazer, CEO of the National Pediatric Cancer Foundation, which raises funds for pediatric cancer research initiatives throughout the nation. “It’s a common practice and it works in many wonderful ways – but for kids, they areso frail and they aren’t developed like an adult, so it is harder for them and there are more side effects.”
The National Pediatric Cancer Foundation is one of more than 20 organizations within the Alliance for Childhood Cancer that started lobbying for the STAR Act since 2015.
Frazer said that while the numbers for childhood cancer diagnoses are significantly less compared to adult cancers, there is a greater need for research and data because 43 children are diagnosed with cancer daily in the U.S. and of the billions spent on cancer research currently, only 4 percent is directed toward childhood cancer.
“Research is the answer to find the cure to treat the most people,” Frazer said. “Since 1980, there has only been 10 drugs developed [to use on] children with cancer, compared to hundreds for adults,” and 95 percent of children who survive cancer will have a significant health-related issue by the time they are 45 years old.
The STAR ACT authorizes key research initiatives, such as biorepositories at the National Institutes of Health (NIH) and surveillance at the Centers for Disease Control and Prevention, while focusing on some of the least-studied and understood childhood cancers.
Long-term studies of childhood cancer survivors were practically nonexistent when he was diagnosed in the ’90s, he said. “My generation is the first to survive in large numbers, and now we can better try to understand long-term outcomes for what is considered best practices right now.”
Kathy Riley, the national director of family support with the Pediatric Brain Tumor Foundation which funds research and patient care for children with brain tumors, said that research and the sharing of data nationwide will be crucial for patients throughout the country because the population of childhood cancer patients and survivors is so small and scattered throughout the country.
For Riley, one of the most important pieces of the STAR Act is that it provides the opportunity to create new and innovative models of care for survivors. Her son was diagnosed with a pediatric brain tumor in 1993 and was treated with radiation to his entire central nervous system in addition to a year of chemotherapy. As a result, he has hearing loss, a growth deficiency, thyroid complications, and intellectual impairments. Doctors also found three additional brain tumors.
“All of this impacts his ability to find a job, to have friends, he has trouble with relationships, he is not able to be married, and he is 30 and still lives with us,” Riley said. “It’s not that you have surgery and you’re done – the treatments are incredibly caustic. Survivors pay a price for their care for years to come.”
Not only does this enhance research on the late effects of treatment, it also opens the floor for discussion of insurance coverage issues and ways to ensure that children maintain access to quality care, and that care for survivors is paid for, she said.
The majority of funding for the STAR Act comes from previously-approved money available as a result of the Carolyn Price Walker Conquer Childhood Cancer Act, which authorized $30 million per year for the NIH and National Cancer Institute in 2008.
“The nice thing about the STAR Act is it isn’t replacing or putting new programs together,” sand Danielle Leach, senior director of advocacy and government relations at the St. Baldrick’s Foundation, the largest private funder of childhood research grants in the U.S. “We want to build on what has already been done and make it better.”
There are currently 24,000 childhood cancer survivors alive today, and we want them to survive and thrive, Leach said. Of those survivors is Leach’s sister, who has lived for 38 years after her cancer diagnosis. Leach’s son Mason, who was diagnosed with a brain tumor in 2007 at age 5, died from complications of the disease after 15 months of treatment.
“I have the opportunity to put my grief into action every day and it gives me the opportunity to honor my son,” Leach said.
Leach said that the unanimous bipartisan support the bill received was due in large part to an eight-month long roundtable conversation with legislators which included doctors, patients, survivors, and researchers “deciding as a community” that pediatric cancer priorities need to be centered around maximizing discoveries in order to create change. The STAR Act requires that a pediatric oncologist serves on the National Cancer Advisory Board, which Leach said will improve the entire organization through additional data and resources.
Pediatric cancer kills more kids than any other disease, Leach said, “and we have to figure out the best way to treat for it long-term.”
