DOGE acting administrator Amy Gleason surrounded in mystery

Amy Gleason, a former emergency room nurse turned health care technologist, was scared. It was 2010 and no doctor could figure out what was behind her daughter Morgan’s strange constellation of symptoms, including rashes and muscle weakness so severe that she could no longer walk upstairs.

When Morgan was finally diagnosed with a rare and potentially life-threatening autoimmune disorder after more than a year, Gleason became determined to empower other patients so they didn’t face similar delays in diagnosis.

“If a doctor had seen all of these visits and activity on one single screen put together, they probably would have wondered why this 10- or 11-year-old is going to the doctor all the time,” Gleason said in a 2020 TEDx talk. “And maybe that would have sparked a faster diagnosis.”

Until recently, Gleason, 53, had been a relatively low-profile health care data cruncher with a passion for simplifying access to electronic medical records.

Then, at the end of February, the White House announced Gleason had been named the acting administrator for the Department of Government Efficiency, elevating her to a prominent position in the Trump administration.

Gleason previously worked on projects related to health data at the U.S. Digital Service, DOGE’s predecessor, overlapping with Trump’s first term and the Biden administration.

However, the White House has not provided details about why, exactly, it selected Gleason to lead DOGE — a task force unit at the center of the administration’s efforts to streamline the federal government. 

The move has led many to question whether Gleason is truly in charge or if the power resides with Elon Musk, the world’s richest man and a special government employee who has been the face of DOGE.

For weeks, the administration evaded questions about who was actually at the helm; the White House said Gleason was the acting administrator only after administration lawyers were unable to answer who was in charge of the agency when questioned in court. Gleason does not appear to have made any public comments since the White House announced that she was DOGE’s top official.

The administration has also revealed very little about who else works for DOGE and what they do, despite Musk’s claims of transparency.

Even with Gleason’s title, Musk still seems to hold sway. As recently as Tuesday, Trump referred to DOGE as “headed by Elon Musk,” setting off fresh legal questions about the group’s operations. The working relationship between Musk and Gleason is unclear, and a DOGE spokesperson did not respond Friday to questions from NBC News about Gleason’s job responsibilities.

Gleason also did not respond to a request for comment for this story. In interviews, former colleagues described her as highly intelligent and the most valuable asset wherever she works.

“It’s exactly the kind of person you need in a role like this,” said Dr. Gregg Alexander, a pediatrician in London, Ohio, who has known her for about 20 years. “She’s always tried to do the right thing.”

Still, some former colleagues worry that in her DOGE role, Gleason will be inadvertently complicit in cuts to programs that have personal significance to her — including research for rare disease funding. DOGE has threatened dramatic budget cuts to federal health agencies such as the Centers for Disease Control and Prevention and the National Institutes of Health.

The condition that Gleason’s daughter, who is now in her mid-20s, was diagnosed with is called juvenile dermatomyositis. The extremely rare disease is a form of juvenile myositis, in which a child’s immune system attacks its own cells and tissues.

Therapies discovered over the years thanks to partnerships with NIH have improved the prognosis for juvenile myositis, said James Minow, executive director at the advocacy organization Cure JM Foundation, where Gleason served as a board member and vice president for research from 2014 to 2018, according to her LinkedIn profile.

But with the Trump administration trying to cut NIH grant funding, Minow said he worried that DOGE could hamper the rare disease research that Gleason’s family and so many others depend on.

“Amy is a very thorough thinker, and I think that she’ll be one who will make very solid, reasoned recommendations to the president as he looks at fulfilling what he sees as his mission to reduce the size of government,” Minow said. “Obviously, Cure JM is wanting to do everything we can to protect NIH’s investment.”

Gleason’s friends and former colleagues describe her as apolitical. From 2018 to 2021, she worked for the U.S. Digital Service, an agency created by the Obama administration after its chaotic rollout of HealthCare.gov. Much of her stint was dedicated to partnering with the Centers for Medicare and Medicaid Services to improve patient access to health care records, she said in her 2020 TEDx Talk.

During the latter part of her time there, she worked on the data team for the White House Coronavirus Task Force, creating databases from hospitals and labs that governors and the public relied on to track the virus. Her LinkedIn profile says she rejoined the U.S. Digital Service in January of this year as a senior adviser, though The New York Times reported she was reintroduced at the agency in late December, ahead of Trump’s inauguration.

Gleason has also worked in the private sector at various health care management companies and startups. She held vice president positions at Allscripts, which provided software for electronic medical records, and worked from 2011 to 2018 at CareSync, a Florida-based medical technology startup that she co-founded, according to LinkedIn.

Her LinkedIn profile adds that from 2021 to 2024, she was vice president of product at Main Street Health, which provides care for people in rural areas, and at Russell Street Ventures, a firm dedicated to launching innovative health care.

Both Main Street Health and Russell Street Ventures were founded by entrepreneur Brad Smith, an early senior DOGE member who was previously named as head of the Center for Medicare & Medicaid Innovation in 2020 during Trump’s first administration.

Smith did not respond to a request for comment; according to anonymous sources who spoke to The New York Times, Smith began advising on Musk’s cost-cutting moves late last year and brought Gleason in on the talks. NBC News has not confirmed the report.

Tom Cooke, a retired health care executive who worked closely with Gleason more than 15 years ago, said her position at DOGE was “kind of a curveball.”

“I’ll put my politics on my sleeve: I don’t trust Elon Musk at all in this role. I trust her completely,” he said. “I am confident that she will use her voice strongly and that she’s a straight shooter, whether it’s news that people above her want to hear or not.”

Cooke described Gleason as having an effervescent personality and an unflappable work mentality.

“Professionally, I put a lot on her plate to get done in a very short period of time, and was amazed by her ability to achieve that,” he said.

And on a personal level, “I’ve seen her be really thoughtful with folks that she may have had just a little bit of interaction with,” he said. “She just has a way with people.”

Others were also surprised by her DOGE title. One former health care IT colleague told NBC News via a LinkedIn message that “it did seem to come out of nowhere.”

“I was shocked to hear of her appointment to DOGE, having been a fierce and committed patient advocate,” wrote the former colleague, who has known Gleason for 15 years and spoke on condition of anonymity because she was concerned speaking out against the Trump administration could have career repercussions. “To go from such a position of kindness, to a position that eliminates jobs for thousands of working parents, seems like such a dichotomy in values.”

A graduate of the University of Tennessee, Knoxville, Gleason is an avid football fan who likes to needle friends who root for anyone other than the Tennessee Volunteers, said Alexander, the pediatrician. He added that she has a “tremendous sense of humor” and loves to travel.

Gleason’s interest in streamlined medical records and other improvements for patients dates back decades. In 2021, she told the “Tell Me Where IT Hurts” podcast, which examines the intersection between health care and technology, that she started out as an emergency room nurse and “quickly realized how powerful health care technology could be.”

Gleason has said the best career advice she has received was from her parents. She told another health care podcast in 2023 that her dad taught her mistakes are a learning opportunity, and her mom encouraged her to follow her dreams.

“I’ve had a pretty great career trying a lot of new things and following my passions as I develop new ones as well,” she told the podcast.