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Denna McGrew says her 23-year-old son, Ethan, who died Tuesday, was given another year of life thanks to the NIH Clinical Center.
BETHESDA, Md. — Around 1,000 people gathered in Bethesda Saturday to express their frustration and fear over possible cuts to Medicare, Medicaid and research at the National Institutes of Health headquarters.
Many were doctors worried federal cuts could come for them.
“Anything that rattles us, anything that causes uncertainty and throws our work into the abyss, that’s a threat to our healthcare and the discoveries we can make to keep people healthy," said Dr. Haley Chatelaine who is Vice President of the NIH Fellows Union and a translational scientist at NIH.
The rally was more personal to some than others.
“My son, Ethan, was 23 years old," said Denna McGrew. "He actually passed away on Tuesday here at the NIH Clinical Center.”
McGrew is from Florida but has spent much of the past 11 months here, with her son.
“He had a rare disease, and he contracted an infection that was, turns out, impossible to cure," said McGrew.
She says her son arrived at NIH nearly dead last March. She believes Ethan's stay here allowed him to celebrate another birthday and propose to his girlfriend, which he did in January.
“One more year with him was everything to all of us," said McGrew. "We have no doubt that he would’ve passed away at the University of Florida in March of last year if it were not for the NIH accepting him into the protocol."
McGrew and her daughter, Jenna, showed up to carry on Ethan's legacy.
"His entire life was about advocacy, and he asked us to continue to tell his story," said McGrew.
"This is the way he wanted his memory carried out and so we want to continue speaking his name and letting people know the NIH does help people," said Ethan's sister, Jenna McGrew.
Politicians also arrived motivated to defend the work at NIH. Congressman Jamie Raskin (D-Md.) says even though a federal judge blocked cuts to medical research, people need to stay vigilant.
“I’m a two-time cancer survivor myself, and I know that the lymphoma doctors that I had, had both worked at NIH and they profited from the research that was done here," said Congressman Raskin. "Why would we go to war against our own institutions?”
Also speaking at Saturday’s rally was Dr. Shahriar Zamani, who works on cancer research at the National Institutes of Health. He says they’re already feeling the effect of federal cuts.
“Right now, we can’t hire fellows, so really no one who is coming through the pipeline to take on new research," said Dr. Zamani.
He says a federal hiring freeze is preventing NIH from adding these trainees that join NIH after grad school.
"My concern is we don’t have enough fellows working on those research projects," said Dr. Zamani. "With the cuts that are potential in the future, that really worries me."
McGrew worries that the many people suffering from rare diseases, like her daughter, Jenna, who has the same immune deficiency as Ethan, might suffer if cuts come.
“We need this research to continue for people like Jenna," said McGrew.
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