Dena McGlew says her 23-year-old son Ethan, who passed away Tuesday, has been given another year of life thanks to the NIH Clinical Center.
BETESDA, Maryland – About 1,000 people gathered in Bethesda on Saturday to express their frustration and fear over Medicare, Medicaid and research potential at the National Health Facilities Headquarters.
Many were doctors worried that federal cuts would come for them.
“Whatever rattles us, what causes uncertainty and throws our work into the deep by, is a threat to our healthcare and a discovery we can make to keep people healthy,” said Dr. Haley Chatreine, vice president of the NIH Fellows Union and NIH translation scientist.
The meetings were more personal than others.
“My son, Ethan, was 23,” Dena McGlew said.
McGrew is from Florida, but has spent much of the past 11 months with his son.
“He had a rare illness and had an infection that proved untreated,” McGrew said.
She says her son arrived at NIH, where he died last March. She believes that by staying here, Ethan allowed him to celebrate another birthday and propose to his girlfriend he went to in January.
“Another year with him was everything for us all,” McGrue said.
McGrue and his daughter Jenna appeared to carry on Ethan's legacy.
“His life was about advocacy and he asked us to continue telling his story,” McGrue said.
“This is how he wanted to implement his memory, so I want to continue talking about his name and let people know that NIH is helping people,” said Ethan's sister Jenna McGrue.
Politicians also arrived with an enthusiasm to protect their work at NIH. Rep. Jamie Ruskin (D-MD) says people must be on guard despite federal judges blocking cuts in medical research.
“I am a survivor of two cancers and I know that the lymphoma doctor I had worked at NIH. They benefited from the research done here,” Rep. Raskin said.
Also speaking at the gathering on Saturday was Dr. Sharier Zamani, who is working on cancer research at the National Institutes of Health. He says they already feel the effects of federal cuts.
“Now we can't hire fellows, so no one can go through the pipeline and take on new research,” Dr Zamani said.
He says the federal hiring freeze is preventing the NIH from adding these trainees to join the NIH after graduate school.
“My concern is that there are not enough peers working on these research projects,” Dr Zamani said. “It really worries me because there are cuts that could be in the future.”
McGrew worries that many people suffer from rare illnesses like their daughter Jenna, who has the same immune deficiency as Ethan, may suffer when the cut comes.
“This research needs to continue for people like Jenna,” McGrue said.
