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“Targeted investment in pediatric research can save lives without expanding the size of the government,” LaLota told Patch. “Children are among the most vulnerable, and more resources are needed to advance life-saving treatments.”

While 1 percent of cancer cases are diagnosed in people under age 20, according to National Cancer Institute (NCI) data, stakeholders argue that pediatric cancer research lags compared to treatments for adults. “More than 4” is the rallying cry for those who wish for the National Institutes of Health (NIH) to increase funding for research into children’s cancers.

The NIH did not respond to Patch’s request for comment.

“Pediatric cancer is a national issue that impacts many families,” LaLota said. “We must maintain a balanced approach that supports families while keeping the government efficient and accountable. I believe we can save lives, spur innovation, and ensure families have the resources they need, all while being responsible stewards of taxpayer funds. I’m committed to working across the aisle to ensure that we invest in the future of our children by boosting research, enhancing care, and supporting families through every step of this fight. Cancer sucks.”

Advocates of more funding for pediatric cancer research argue that children who die of cancer lose more years off their lifespan than adults; that children are receiving treatments and therapies created for adults; and that cancer is a leading cause of death for children and adolescents.

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 of 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.

LaLota said he was proud to co-sponsor H.R. 3433, or, the Give Kids a Chance Act of 2024. The Give Kids a Chance Act of 2024 unanimously passed the U.S. House of Representatives earlier this year but still needs to pass the U.S. Senate before the sitting president can decide whether or not to sign it into law.

If passed, the Food and Drug Administration would be allowed to authorize trials of drug combinations for pediatric cancer, which are currently only studied for adults, LaLota said.

“By allowing the investigation of multiple therapies in children, the bill aims to improve outcomes, especially for those with relapsed cancer, where single-drug treatments are often insufficient,” LaLota said.

LaLota is being challenged for his U.S. House of Representatives seat by Democrat John Avlon.

Sylwia Jasinski, a doctor of pediatric hematology-oncology at NYU Langone Health, said she “wholeheartedly” supports the Give Kids a Chance Act. Jasinski noted the law, if enacted, would prioritize pediatric drug trials and address the “urgent need” for innovative treatments tailored to children with cancer and other rare diseases.

“By expanding the FDA’s pediatric drug review and incentivizing research into multi-drug therapies, the Act [would] bring us closer to delivering life-saving treatments that our young patients need and deserve,” Jasinski said. “This is a powerful step toward ensuring no child faces outdated or limited options in their fight against life-threatening diseases. It brings us closer to finding a cure for certain pediatric cancers and more specific medications tailored to pediatric patients.”

New York State Sen. Monica Martinez (D—Suffolk) said expanding coverage of preventative and early-stage cancer screenings for children would be a “logical step” to protect public health. She said it follows the same approach she took with Shannon’s Law in 2019, which required insurance companies to cover annual mammograms for breast cancer screening starting at age 35.

“Too many cancer diagnoses were being missed simply because people weren’t being screened early enough,” Martinez said.

Martinez, a member of the state senate’s Insurance Committee, said she is committed to working with providers to increase screening coverage that protects children, just as the state has done for those at risk of breast cancer.

“While early detection is critical, it’s equally important to have sufficient numbers of specialists trained in pediatric oncology and to ensure age-appropriate treatments are available for children who receive a positive test result,” Martinez said. “This is why continued support for SUNY and its medical programs, along with adequate federal funding for cancer research across all stages of human life, will be essential if we are to one day eradicate these deadly diseases.”

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.

Martinez is being challenged for her 4th State Senate District seat by Republican Teresa Bryant.

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.

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.

New York State Sen. Steve Rhoads (R—Nassau) called pediatric cancers a “profound challenge” that extends “far beyond the medical diagnosis.”

“They significantly impact the emotional and financial well-being of families,” Rhoads said. “The stress of navigating treatment options and uncertainties in care can be overwhelming during such troubling times.”

Rhoads, a member of the state’s Senate Health Committee, said he takes the matter to heart and voted in favor of S.8750, the “Pediatric Cancer Neuropsychological Needs Assessment Act.”

This legislation would mandate insurers to cover neuropsychological assessments for children diagnosed with pediatric cancers affecting brain development or function, which Rhoads called a “critical shift that recognizes the unique needs of these young patients.”

The bill passed the state senate but still needs to pass the state assembly before Gov. Kathy Hochul would decide whether or not to sign it.

“Access to comprehensive neuropsychological evaluations is vital, yet it has often remained a barrier for children with brain tumors and cancers,” Rhoads said. “These detailed assessments provide essential insights into the cognitive and emotional impacts of tumors and treatment, evaluating areas such as memory, language, executive function, and emotional well-being.”

These evaluations are often performed over several days, which could cost families thousands of dollars, Rhoads said.

“Without insurance coverage, many families find these necessary evaluations financially out of reach, hindering their children’s access to vital services and interventions,” Rhoads said.

The passage of this bill would ensure that people under the age of 26 could receive the “necessary insurance coverage” for neuropsychological examinations related to their pediatric cancer or brain tumor diagnoses, Rhoads said.

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

“This support not only alleviates financial burdens but also fosters better outcomes for children by facilitating timely and appropriate interventions,” he said. “While I am pleased that this bill has made significant progress in the Senate, it is important to note that it did not pass through the Assembly this year. As we look forward to the new legislative session, I am committed to advocating for this bill’s passage in both houses, and to pursue other avenues to provide support to families struggling with a pediatric cancer diagnosis.”

Rhoads is seeking re-election in the 5th State Senate District against Democratic challenger Lisa Lin.

Jasinski serves as the medical director of the Pediatric Cancer Survivorship Program at NYU Langone Long Island.

“We often see long-term side effects of cancer therapy including cognitive and emotional impacts of cancer treatments that can be profound depending on the therapy a child receives,” she said. “While our goal is a complete cure for all of our patients, we also strive for as few long-term toxicities as possible so children can go on to be healthy, thriving adults. This bill will ensure coverage for neurophysiological evaluations, enabling us to better understand each patient’s unique needs and deliver more targeted, holistic care that supports their long-term wellness and quality of life. Testing is often very expensive to families, but early testing can let us know about any deficits treatment may have caused and allow us to intervene early with accommodations as well as services and resources to better support our patients and survivors.”

LaLota said other potential solutions to challenges faced by children dealing with a cancer diagnosis and their families “should involve expanding access to high-quality care through market-drive solutions” such as health savings accounts and competition in healthcare.

“Reducing government red tape that slows access to cutting-edge treatments is essential for helping families,” LaLota said. “Solutions must include improving access to clinical trials, expanding telemedicine for families in rural and low-connectivity areas like [Long Island’s] East End, and creating a support network that offers comprehensive emotional, financial, and logistical assistance to families during treatment.”

Jasinski previously said funding should 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. She said another solution is to streamline the drug approval process to reach children faster — especially for high-risk or rare cancers.

New York State Assemblyman Keith Brown (R-Northport) said New York families could “rest assured” that the Assembly Republican Conference is doing “everything it can in Albany to support families and children affected by cancer.”

“We are working hard to increase funding at the state level for cancer research and services provided to families in need,” Brown said.

Brown said he voted yes on bill A.4219, which passed both the state assembly and senate, that would direct the New York State Department of Health to conduct a study on the incidences of cancer clusters in cities and towns having a population of more than 90K.

The bill has yet to be delivered to Hochul.

Hochul’s Office did not respond to Patch’s request for comment on whether or not she plans to sign bill A.4219 into law, or whether or not she would sign the Pediatric Cancer Neuropsychological Needs Assessment Act should it pass the state assembly.

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

Brown said examining environmental conditions of areas with cancer clusters, improving public health and safety standards in communities, keeping the public informed about support services for families affected by cancer and promoting early cancer screenings “must be top priorities.”

“These will help people stay healthy and educated on cancer risks/treatments and will also help people catch the presence of cancer early so treatment can start immediately,” Brown said. “Helping provide lodging, resources and comfort to underprivileged families or those forced to travel far from home so their child can receive the medical attention and care they need is critical, as well.”

Brown said he has advocated for Ronald McDonald House Charities and the “great work they do helping families and children throughout New York state.”

Brown said he also supported budget initiatives that would support cancer research, including:

Christopher Vakoc, a molecular biologist and a professor at Cold Spring Harbor Laboratory, previously 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.

Brown said he would “like to support more bills” that would increase funding for cancer research and support services for families.

“So many New York families are affected by cancer each year,” Brown said. “Whether it’s someone you know, a loved one or you, cancer is widespread and has a tremendous impact. I will continue to fight to keep our community healthy and safe and make funding as well as support services available to those in need.”

Brown is seeking re-election in New York’s 12th Assembly District. His Democratic challenger, Thomas Cox, is not actively campaigning.

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