'Disheartening': LI Parents, Experts Demand More Pediatric Cancer Research Funding

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In 2022, the average years of life lost due to cancer was 14.2, according to the NCI. Children, however, on average lose over 68 years life to cancer, according to Cure Search.

A non-adult’s average age of diagnosis is 10 years old (ages 0 to 19); 6 years old for children (aged 0 to 14); and 17 years old for adolescents (aged 15 to 19); while adults’ average age for cancer diagnosis is 66, according to Children’s Cancer Cause.

Jordan Belous, founder of Hauppauge-based charity Whip Pediatric Cancer, has befriended children who have ultimately died of cancer. She said that children who are prematurely dying of cancer lose their chance to make their mark on the future of the world.

“These kids, maybe they would be a great [presidential] candidate,” Belous said. “Maybe they would find the cure to cancer or they would be the first female on the moon. There is such potential with kids. They don’t even have the chance to go prom or go to graduation or drive a car, because of this disease.”

All types of pediatric cancer received $714 million of the 2023 NIH budget. Other common childhood cancers include brain tumors ($427M), lymphoma ($323M), leukemia ($255M), and neuroblastoma ($119M), according to NIH data, although funding includes adult research into most types of cancer. Other common childhood cancers — Wilms tumors; rhabdomyosarcoma; retinoblastoma; bone cancer; and spinal cord tumors; did not meet the minimum reporting threshold of $500K.

Logan Spector, a PhD and chair of the Children’s Cancer Research Fund (CCRF) research advisory committee, said research into rare cancers like hepatoblasoma is “very important” to families impacted by it, but “NIH reviewers just do not see the need to study such a rare cancer,” according to the CCRF.

The NIH did not respond to Patch’s request for comment on whether or not it plans to allocate a higher percentage of funding to pediatric cancer research in its 2025 budget or if the rarity of pediatric cancers affect budgeting decisions.

A 2021 correlation study by Jama Pediatrics explored the correlation between NIH funding for pediatric research and pediatric “disease burden” — the impact of a health problem on a population, including effects on health, society, and costs — in the United States. A cross-sectional analysis of 14,060 pediatric grants in the U.S. found that NIH funding for pediatric research was correlated with “disease burden.”

The study concluded “substantial overfunding and underfunding of certain conditions.” The study is posted on the NIH website, but a disclaimer notes it does not necessarily mean the NIH endorses it.

The NCI receives its budget from the United States Congress as part of the federal budget process through appropriations for the Department of Health and Human Services and the NIH, according to the NCI. The NCI received approximately $7.1 billion in 2023, operating within the NIH budget.

The NCI did not respond to request for comment on how much it specifically budgets to pediatric cancer research.

Approximately 9,620 children in the United States under the age of 15 will be diagnosed with cancer in 2024, according to the American Cancer Society. Around 1,040 of those children are expected to die in 2024, the society stated.

“It’s such a big number, but it hits so close to home, because these kids are not a number,” Belous said. “You think it’s so rare. These kids are throughout your community. They’re going to school and playing soccer. There are so many kids out there who are sick.”

Cancer is the second leading cause of death for children ages 5 to 9, behind accidents, while it is the third leading cause of death for children ages 10 through 14 behind accidents and self-harm, according to the Centers for Disease Control and Prevention.

Globally, an estimated 400K children and adolescents aged 0-19 years old develop cancer each year, according to the World Health Organization.

Childhood cancer is not one disease — there are more than 12 major types of pediatric cancers and more than 100 subtypes, according to Children’s Cancer Cause.

Lifestyle related risk factors do not play “much of a role” in a child’s risk of getting cancer, according to the American Cancer Society.

“Some of these cancers in adults are impacted by things that they do,” Belous said. “Smoking, vaping, health things, eating and nutrition-wise. These kids, they didn’t even have a chance to go to a party and vape or anything. They are as innocent as they come, and they deserve the opportunity to grow up, be something amazing, and contribute to the world in a positive way.”

Check out Patch’s Long Island cancer charity index.

Valerie Cusumano founded Vinny’s Army, a charity dedicated to supporting children diagnosed with cancer and their families, after the diagnosis of her son, Vinny. Since childhood cancer is near impossible to prevent, she said, the only hope of saving children lies in better treatment options, vaccines, and cures.

“Kids aren’t smoking and more prone to lung cancer,” Cusumano said. “Kids aren’t baking in the sun for years on end and more prone to skin cancer. Kids aren’t doing anything other than being kids and they are still getting cancer.”

Vinny was diagnosed with the “very rare” malignant renal rhabdoid tumor at the age of 10.

“It is normally something that is seen in children under age 3,” Cusumano said. “It’s unheard of for a 10-year-old to have it. The fact that he was older allowed his oncologist to pump him with ‘the kitchen sink’ of chemotherapy.”

Vinny completed chemotherapy on June 4, 2023 — 32 weeks to the exact day of his diagnosis.

All the chemotherapy Vinny had was designed for adults, however, Cusumano said.

“It was only approved for children by the FDA after it was approved for adults,” she said.

Sylwia Jasinski, a doctor of pediatric hematology-oncology at NYU Langone Health, was Vinny’s oncologist. Most chemotherapy treatments are originally developed and tested in adults with data then adapted for pediatric use, Jasinski said. The adult treatments are modified to suit children considering differences in size and physiology.

“Only a few clinical trials have been initially designed specifically for pediatric patients,” Jasinski said. “While adult medications are used, the treatment protocols are tailored to children based on clinical trials in pediatric patients.”

Jasinski said her clinic cares for a cohort of approximately 50 patients per year in all stages of their oncology treatment, in addition to a “large program” of long-term cancer survivors. She said it is “disheartening” to see only a “small fraction” of cancer research funding is dedicated to pediatric cancers, despite the “unique challenges and aggressive nature” of the diseases in children.

“Increased investment is crucial to advance research, offer hope, and ultimately save more children’s lives,” Jasinski said. “These children and their families suffer immensely with the diagnosis they are living through as well as their treatment. The least we can do is offer the most cutting-edge treatment to give them the best chance at survival.”

If the NIH were to provide more funding for pediatric cancer research, the “priority,” Jasinski said, should be on developing treatments specifically designed for children, as opposed to relying on adapted adult therapies.

“This would include investing in targeted therapies and immunotherapies that are less toxic and oftentimes more effective for pediatric cancers,” she said.

The priority solution Jasinski proposed to the federal government is to increase funding for pediatric-specific research.

“Currently, only about 4 percent of the federal budget for cancer research is allocated specifically to pediatric cancer research,” Jasinski said. “This means that out of the billions of dollars spent on cancer research annually, a very small portion is dedicated to understanding and finding treatments for cancers affecting children.”

Only five drugs are approved exclusively for children with cancer by the U.S. Food and Drug Administration and two by the European Medicines Agency, according to the World Health Organization.

Funding should also support large-scale clinical trials focused on pediatric patients, as well as research into the unique biology of childhood cancers so new therapeutic targets can be identified, Jasinski said. She said another solution is to streamline the drug approval process to reach children faster — especially for high-risk or rare cancers.

“Enhancing supportive care measures to minimize treatment side effects and improve long-term quality of life should also be a key focus,” Jasinski said. “Our goal should not just be to every childhood cancer patient to be a survivor, but also to live a long, healthy life without long-term sequelae of their cancer or its treatment.”

Cusumano said Vinny may never be able to have children because of the chemotherapy and radiation he received.

“We knew that before anything started,” she said. “It was a trade off we had to make because we needed him to be able to get to be an adult so he can have that conversation with a significant other. But it’s completely unfair and more needs to be done for our kids to keep them safer from short and long term side effects.”

Other potential side effects linked to chemotherapy, radiation therapy and other cancer treatments include increased risk of other cancers; increased risk of stroke; infertility; dental problems; early menopause; hearing loss; heart and vascular problems; loss of taste; lung disease; nerve damage; intestinal problems; memory issues; osteoporosis; digestion issues; reduced lung capacity; hypothyroidism; lymphedema; blood clots; joint or muscle problems; and more, according to Mayo Clinic.

There are approximately 500K people in the U.S. who have survived childhood cancer, according to the NIH.

The leading non-cancer-related cause of death in long-term survivors is cardiovascular disease, according to the NIH. Compared with the general population, childhood cancer survivors are eight times more likely to die from cardiovascular-related disease.

Cusumano said if the NIH were to increase funding for pediatric cancer research, funds would be best served on better treatment options and safer medications.

“I pray we can get to a day that we live in a world that cancer doesn’t exist,” Cusumano said. “But I think we are far off from that. The sad reality is that it will affect more children every day. So we need to be able to get to a point that oncologists can deliver the devastating news to a parent, but then follow it up with having a medication, a shot, something that is designed for children to fix this. Something that was designed for a child’s body. Something that takes into account that their body, all of their systems, their brain, everything is not fully developed yet.”

In 2016, Rachel Antorino was diagnosed with acute myeloid leukemia at the age of 12. She died at the age of 14 after 20 months of receiving “outdated, toxic drugs” used on adult patients, as well as “experimental and ineffective treatments,” said her mother, Aimee Antorino.

“Pediatric cancer research is widely underfunded,” Antorino said. “While there have been improvements over the years, success is not spread equally across cancer types or patients. Four percent is not enough! My daughter Rachel and so many other children deserve more!”

Antorino founded Rachel’s Dance for the Cure in her daughter’s memory. The charity aims to boost awareness of pediatric cancers, raise money to find and fund cures, and help other children and families suffering from a cancer diagnosis and treatments.

Belous said drugs designed specifically for pediatric cancer are needed.

“You won’t give your baby Advil because it’s not safe,” she said. “If your baby is teething, you’re not giving them adult Motrin. We’d be calling the CPS on you, because that’s not acceptable. That’s not even a thought. They make baby Benadryl and baby this and that. But if your kid gets cancer, it’s ‘Why don’t we throw chemotherapy for a 75-year-old man at a 5-year-old female?’ Where does that make sense? Chemo for anyone is not great. It’s for a kid, and that just blows my mind.”

One girl that Belous helped through Whip Pediatric Cancer was Charlotte Grace York, who lived in Oklahoma. Charlotte was cancer-free when she died at 6 years old, but the impact of the treatment on her lungs is what killed her, because the treatment was not designed for someone Charlotte’s age, Belous said.

“It’s the most frustrating thing, because it wasn’t the cancer that took her, it was the treatment that took her,” Belous said. “That forever makes me so angry, because it’s so unfair for her family to have gone through the fight and put in the time and energy and the efforts to get her the best treatment, and for the treatment to be what killed her, I can’t fathom it.”

Schmidt said funding research is “critical” to finding cures.

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“You may not see an immediate impact from research, but that doesn’t mean that we shouldn’t be giving,” Schmidt said. “The truth and reality is, is that research can and does save lives. There have been many breakthroughs in treatments for the more common adult cancers because of research. If we expanded and grew our funding for pediatric cancer research, we feel positive it will lead to better outcomes for kids. And as we all know, the kids are our future.”

Maggie’s Mission, since its inception, has raised more than $1.85 million for malignant rhabdoid tumors pediatric cancer research at Memorial Sloan Kettering. The charity has also raised $50K for rhabdomyosarcoma research being done at Cold Spring Harbor Laboratory.

Christopher Vakoc is a molecular biologist and a professor at Cold Spring Harbor Laboratory. The lab has a program on pediatric sarcomas, which prioritizes rhabdomyosarcoma and Ewing sarcoma. Vakoc is studying how to transform sarcoma cells into healthy cells through genome-editing — or differentiation therapy — as an alternative treatment to chemotherapy, surgery or radiation.

Patients and their families could be spared a “great deal of pain and suffering” if doctors could transform sarcoma cells into regularly functioning tissue cells, according to the laboratory.

Vakoc said more federal funding, as well as efficient ways for researchers to obtain grants, would have a “huge impact” on the pace of which they could make new discoveries.

“For a lab like mine to do the research we’re doing, I spend huge amounts of time writing grants and engaged in fundraising efforts,” Vakoc said. “That does pull me away from actually thinking about the science. Thinking about how can science deliver breakthroughs, it is a bottleneck that we don’t have enough funding and we have to work so hard to find it … Funds are critical. We feel directly the impact of the pediatric research budget. We wish that it could be increased, of course.”

Vakoc said there is a “long ways to go” in how close researchers are to achieving “transformative change” in how patients are cared for. Researchers are still pinpointing the target needed to convert cancerous cells back to normal muscle cells as an alternative to chemotherapy.

“It’s going to be a series of forthcoming discoveries that will be required to take the research to that next level,” he said.

Vakoc is now fundraising to support work in exploring whether existing drugs can be repurposed as a rhabdomyosarcoma therapy using animal models. This specific research, which Vakoc said he is the “most excited” about, is expected to take a couple of years.

The Cancer Moonshot is a White House initiative launched in 2016 to accelerate scientific discovery in cancer research, encourage more collaboration and improve the sharing of cancer data, according to the NIH. The initiative aims to bring together patients, advocates, researchers, and clinicians “dedicated to advancing research to end cancer as we know it,” according to the government.

Cusumano said it “sounds like a great idea,” but there are problems with it as far as children are concerned: of the five priority actions addressed in The Cancer Moonshot, “none are helpful to combat pediatric cancer.” She outlined the five actions and said they are not helpful to children:

Cusumano said it is “extremely frustrating as a parent” to see government officials take action but then realize children are not benefiting from the efforts.

“To an outside observer, it would seem that the government is really trying to combat cancer, which they are,” Cusumano said. “However, none of it helps combat childhood cancer.”

Without cancer risk factors for children and screening unavailable, parents are left to deal with a diagnosis when it arises, Cusumano said.

“As a parent, the last thing that you want to hear is that they are going to load your child with toxins in the hopes it works to cure what wasn’t anything they could have controlled,” she said. “Reading the pamphlets before chemo begins that contain all the side effects will make any person sick. But in that moment, your back is against the wall. You have no choice. A doctor is telling you that we need to move quick and the chemo is the only option. So in a way, you feel like you are signing your soul away to the devil to hopefully cure your child by signing the consent forms. When the dust settles and you look more into the medications, and you realize that the majority of them were never designed for children in the first place, you become sick. The chemo put in you, I, or an 80-year-old person, is the same chemo they put into my 10-year-old son. They just lowered the dose. His body was/is still developing.”

Cusumano said it does not make sense to put toxins into children or full-grown adults, but it is the only option for many. She called for “better, safer, less toxic drugs” and strategies specifically to treat pediatric cancer.

“We can’t keep giving these kids the same things that full grown adults get and expect them to be OK in the long run,” she said.

Schmidt urged doctors and trained medical staff to listen to parents of children who complain of not feeling well. Before Maggie was initially diagnosed, Schmidt said her daughter’s complaints were “ignored” by medical staff for months.

“We were brought into a little room, told she had stage 4 cancer and there was nothing they could do,” Schmidt said. “They pushed a little note towards us with the name of a drug that might help extend her life, not save it.”

Maggie was not diagnosed with cancer until October 2016 but was first sick on Aug. 10, 2016 — just 18 days after doing her first and last Tough Mudder race, Schmidt wrote on Maggie’s Mission website. Maggie was taken to a local hospital, where she was found to have been bleeding internally because of what doctors thought could be a possible burst ovarian cyst or ovarian torsion, Schmidt said.

Schmidt asked two surgeons at different hospitals to remove Maggie’s ovary if it would save her life, but both felt it unnecessary, Schmidt said. Maggie complained of pain, on and off, for weeks after that. Each time, Schmidt said she and her daughter were dismissed.

Maggie felt bad pain in her right ovary in October 2016. Medical officials thought it was a “hematoma” or leftover blood clot from prior surgeries and that Maggie’s body would reabsorb it on its own, Schmidt said. The family was told to return in three months, Schmidt said.

The “hematoma” turned out to be a tumor which burst. Maggie’s right ovary was surgically removed, and multiple masses were discovered in her abdomen, her mother said. Over a week later — Maggie hospitalized the whole time — the family was told Maggie had stage 4 small cell carcinoma that likely started in her ovary, and the best they could hope for was to extend her life.

“We were broken by the news — broken!” Schmidt wrote.

A scan in April showed major tumor growth, as well as new tumors. The family was told Maggie was dying and there was nothing more that could be done. The family hosted Easter, at Maggie’s behest, and celebrated her birthday on April 19.

“It was an extremely difficult time for all of us, singing ‘Happy Birthday’ to Maggie, knowing it would be the last time we would ever sing those words to her,” Schmidt said.

Maggie died June 1, 2017.

“Too often pediatric cancers go undiagnosed and when they finally are, it’s too late,” Schmidt said. “Like in Maggie’s case.”

Jasinski said she takes a “family-centered” approach to oncology care. She recognizes that a child’s wellbeing is linked to the support and involvement of their family and support system and encourages shared decision-making.

“It’s about actively listening to the family’s values, concerns, and goals for their child’s treatment, ensuring they feel heard and respected,” Jasinski said. “It means presenting information clearly, discussing all available options, addressing uncertainties, and working together to choose the best course of action, always considering the child’s quality of life and the family’s hopes and preferences.”

When caring for a child battling cancer, Jasinski said she feels a mix of compassion, awe at the child’s bravery, and a “profound sense” of urgency.

“Seeing their courage is inspiring and heartbreaking, especially knowing that the treatments available are often not tailored to their unique needs,” Jasinski said. “This realization brings a feeling of frustration knowing that with more resources and dedicated research, we could offer these children more effective, gentler therapies that would give them a better chance at recovery and less chance at long-term side effects.”

Vakoc said he believes federal funds are prioritized to support projects with proven feasibility and less risk, which can limit creativity on applications for government funding.

“I would say for the NIH, because there’s a public mandate to be responsible with public funds — taxpayers’ dollars — they want to see some proof of evidence that [research is] going to work,” Vakoc said. “…There’s kind of a paradox there that some of the best, most creative, original ideas might look too risky for the NIH government funds.”

Vakoc said that NIH risk management is not a bad thing and is a “necessary part” of its responsibility to the public.

“But what’s needed as a complement to that is funding mechanisms that can explore bold ideas that don’t have as much of a requirement for demonstrated feasibility,” he said. “That is where foundation funding is most powerful. Every foundation is different, but often, they’re drawn to big, bold ideas. Usually, the folks who run the foundation have the authority over how they want to spend the funds they raise. When you put those two things together, it allows for more funding for higher risk, higher return ideas. My lab does a lot of very bold experiments. That is why we’re so grateful for the funds that Maggie’s Mission and others have raised for us.”

Cusumano said pediatric cancer advocates “often feel forgotten” because of the rare nature of cancer diagnoses in children, and more attention is given to breast cancer awareness in October than to pediatric cancer awareness the month prior.

“Everywhere you look, it’s pink ribbons when we are not even out of September — Childhood Cancer Awareness Month — and schools and businesses are already full throttle into October and breast cancer awareness. Even in school districts, they are already selling pink shirts. And I’m not taking anything away from any breast cancer warriors. However, there is so much less recognition for childhood cancer. And less recognition means less funding to help us battle cancer.”

Cusumano said most people pushing and fighting for childhood cancer patients are their parents.

“We are an already exhausted population from having to go through the childhood cancer battle with our own child,” she said. “We then have to pull on the fumes that we have left to fight so hard for our kids to get a fraction of the funding, research, awareness and recognition.”

Belous called on professional sports franchises and airlines, among other entities, to raise the same level of awareness for childhood cancer as is done for breast cancer in October.

“Yes, donate to breast cancer and donate to all cancer research to support it,” Belous said. “But where’s the gold in September? I don’t go to a grocery store and see gold. But they’re selling pink socks, or they’re promoting all this research, but it’s never highlighted for the kids.”

Cusumano urged action, awareness and more government funding, because given the lack of risk factors surrounding childhood cancer, it could happen to anyone.

“In a million years, I never thought this would happen to us. It wasn’t us, until it was us,” she said. “It happened that quick. Each and every doctor and nurse we encountered throughout our journey has been incredible. [Vinny’s] oncologist, Dr. Silwia Jaskinski, saved his life and we will never be able to repay her for giving us our son back. She, along with all the other doctors that consulted and nurses that worked with us, did the absolute best they could do with the knowledge and resources they had available to them. We need to give them more. We need to give our kids more. We need to prioritize them because even though pediatric cancer is considered rare, one is too many. It’s not rare when it affects your child and your family. And it can happen to anyone in the blink of an eye.”

Belous said pediatric cancer is “not as rare as you think.”

About 1 in 260 U.S. children will develop cancer before the age of 20, according to Children’s Cancer Cause.

“It’s so overlooked and so underfunded, obviously,” Belous said. “Even the awareness part of it, we need to do better. Awareness leads to funding, funding leads to research, and then research leads to a cure. I think that this is a crucial part of this whole thing. If you can’t donate or it’s not in your immediate plan, then at least be aware that this happens every single day, and that this many kids are diagnosed every single day. I would like to see some big corporation step up in a huge way.”

Jasinski called for legislation that would mandate pharmaceutical companies to participate in pediatrics trials, even if it is “less lucrative.”

She urged state lawmakers to ensure that every child, regardless of socioeconomic status, has access to cutting-edge treatments by expanding insurance coverage, supporting patient assistance programs, and funding travel and accommodation for families seeking specialized care.

Belous is currently helping Aubrey Hutson, a 10-year-old Florida girl, during her fight with rhabdomyosarcoma.

“We keep saying, ‘The world needs her,'” Belous said. “It would be so dull without her. She’s such a light.”

Tessa Marie Prothero was another girl who Belous helped through Whip Pediatric Cancer. Tessa died of stage 4 neuroblastoma in 2017 at the age of 9. Belous plans to continue fighting for cures in memory of Tessa and other children she’s met through her charity.

“I always say, ‘Why does bad stuff happen to good people?’ It really seems like the most innocent, pure kids are getting sick,” Belous said. “They’re wise beyond their years.”

Belous urged people to consider what children could have gone on to accomplish had their lives not been snuffed by cancer decades too early.

“If Tessa was still here, what she would’ve been able to do would have been insurmountable,” she said. “She was such a strong force of nature. Her energy brought so many people together. I always wondered, ‘If somebody cared a little bit more and gave a little more to her research-wise, what would she have been doing now in high school? What would she be doing 10 years from now?’ I think that’s a really scary but true thought. What could these kids have been impacting? What would their mark be on this world? They don’t get a chance to grow up. That’s the saddest part here. Why they deserve more funding and why they should focus on the new minds of little kids. Letting them change the course of the world and where it’s heading.”

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