By Grace Bird
WASHINGTON, D.C.- President Trump’s proposed cuts of 18% or almost six billion dollars to the National Institute of Health was unanimously decried as detrimental to cancer research in a hearing by the House Oversight and Government Committee on Wednesday.
Tammy Carr’s infant son Chad was diagnosed with an incurable form of brain cancer, Diffuse Intrinsic Pontine Glioma (DIPG), in 2014, and passed away on November 23rd, 2015. Chad’s prognosis did not differ from that of forty years ago according to Defeat DIPG – he was given a zero percent chance of survival and nine months to live. Carr testified the need for increased federal funding in cancer research.
“Our beautiful, spunky three-year-old who had been running around the house two days before was given a death sentence,” Carr said. “When I hear about those potential cuts to the NIH…it just hits me right in the gut.”
300 – 400 children are diagnosed with a cancer of the brain stem each year, according to the National Cancer Institute. DIPG research does not receive federal funding. The small cohort of scientists dedicated to finding a cure for DIPG is “almost entirely funded by families like ours,” Carr said.
“How is that possible when we live in the most technologically advanced country in the world?” she said.
Cancer is the leading cause of death in children past infancy, killing almost 2000 children annually, according to the NCI. However, 4% of federal research funding is allocated to pediatric cancer.
After her son’s death, Carr established the ChadTough foundation, which raised $1.5 million for DIPG research in 2016. However, that is “just a drop in the bucket of what is really needed,” Carr said.
Republicans and democrats universally supported Carr’s plight, and expressed opposition to Trump’s budget proposal.
“I’m a conservative Republican, I’ve voted to cut just about everything up here,” John James Duncan Jr. (R-TN) said. “But…I very much favor medical research and I appreciate the work you’re doing,” Duncan Jr. said.
Duncan Jr.’s father and uncles died of prostate cancer, an illness he currently has “a little touch of,” he said.
Republican congressman Rod Blum of Iowa (R-IO), similarly “stood against” the proposed cuts to the NIH.
“There’s a lot of things government shouldn’t be involved in…one of the things we should be involved in is researching these hideous diseases,” Blum said.
Dr. Mary Beckerle, CEO and Director of the Huntsman Cancer Institute, testified that “research is our best defense against cancer.” 50% of all cancers are preventable, including 50 types of inherited cancers, Beckerle said.
Dr. Tyler Jacks, Director of the David H. Koch Institute for Integrative Cancer Research, testified that the current funding for cancer research this year, $300 million, “could have been easily two or three times that amount and we could’ve spent the money wisely.”
Jacks noted that the hearing was particularly timely given the “considerable uncertainty in the biomedical research community” owed to the budget proposal. The cuts would “imperil the training of the next generation of biomedical researchers,” Jacks said. If Trump’s budget was enacted, an estimated zero new grants would be offered next year, he said.
The professed “cheapest guy here,” congressman Glenn Grothman (R-WI), voiced concerns that the four witnesses were unable to recall the exact number of brain cancer research institutes in the U.S.
“It just scares me when you say you’re not sure how many places around the country are doing research,” Grothman said.
Dr. Stephanie Jaffee of John’s Hopkins Hospital, said there is no institute that is dedicated solely to brain cancer research in the U.S.
Congressman Mark DeSaulnier (D-CA) pointed to the economic benefits of the NIH: “every tax dollar spent returns almost $8.50 in extra spending.” The Genome Project produced nearly one trillion dollars in economic growth, DeSaulnier said.
DeSaulnier was recently diagnosed with leukemia. 15 years ago his cancer would’ve been terminal, and he said he attributes his remission to investments in cancer research.
Ranking Democrat Elijah E. Cummings, (D-MD) said the proposal “can only be described as heartless.” Cummings displayed a clip of Sean Spicer defending the proposed NIH cuts during the hearing.
“It’s an assumption in Washington…that if you get less money, it’s a cut,” Spicer said of the proposed cuts to the NIH. “To assume that if you throw money at a problem and that it’s somehow magically solved is a very Washington way of looking at a budget problem.”
Cummings spoke of the “bipartisan outrage” directed at the proposed cuts to the NIH.
Chairman Jason Chaffetz (R-UT), who lost both of his parents to cancer, concurred with the members.
“Look, I’m a really conservative person, but when you have 1500 people a day dying…this should be the national imperative to fund it properly,” Chaffetz said.