Heard on the Hill

A mysterious illness killed their son as the AIDS crisis raged

These grieving parents decided to ‘do something’

Parents-turned-activists Vicki and Fred Modell meet with Steny Hoyer in the ’90s. (Courtesy Scéal Films)

Just a few years after losing her son, Vicki Modell found herself in front of a microphone, staring down a group of senators.

“It was such a welcoming environment.” That’s how she recalls the political climate of Washington in the early ’90s. “The Appropriations Committee would actually sit there and listen to people like us who were advocating for our cause.”

She and her husband, Fred, would know. They spent countless hours at the Capitol fighting against primary immunodeficiency — the condition their son Jeffrey was born with, and the one that ultimately killed him in 1986 at the age of 15.

They didn’t choose to be advocates. But at the time, no one else was talking about their son’s disease, which left him vulnerable to the slightest sore throat or cold. The grieving parents founded the Jeffrey Modell Foundation in 1987, and dove into a sea of congressional faces and names.

“We really didn’t know any better,” Fred told me of his time lobbying on the Hill. “We said, ‘Who’s in charge of the health care and all of that stuff?’” Hardly anyone had heard of “primary” immunodeficiency. The focus back then was on “acquired” immunodeficiency, or AIDS, a scourge that was wreaking havoc on communities across the country.

“When the public heard the child had an autoimmune deficiency, they automatically thought of AIDS,” Vicki explained. It was her task to distinguish her son’s condition from the one already at the forefront of American public health at the time — without diminishing either disease.

While the Modells’ limited time with busy lawmakers made the case for research and funding anything but simple, they managed to get Congress’ attention. How they did it is the story of “Do Something,” a new documentary from Scéal Films that captures the policy climate of the ’90s, with all its anxieties and incremental triumphs.

Players include the likes of Joseph I. Lieberman and Alfonse M. D’Amato, who led the charge in the Senate. To raise awareness, Lieberman helped set aside the last week of April as Primary Immunodeficiency Week.

In between hasty walks to and from 100 offices in a day, Fred and Vicki shared their story in exchange for support. They had hurried conversations with Reps. Nita M. Lowey, Steny H. Hoyer and Rosa DeLauro. They sat for hearings before John Edward Porter, then chairman of the Labor-HHS-Education Appropriations Subcommittee.

“We had champions,” Fred said of the team of Democrats and Republicans in Congress.

Hoyer still remembers what it was like to encounter the Modells, whose son had urged them to “do something” to keep other kids from dying.

“I said at the time of Vicki’s testimony and continue to believe that when Americans share their personal experience with Congress, they offer an important and compelling perspective that assists members in deciding where to best allocate funding,” the Maryland Democrat said in a statement.

The film, set for release on June 11, will be screened June 3 on Capitol Hill. Fred says that “showing this film to Congress is really just a touch of our thanks for what they’ve done. This could have never happened without Washington.”