Two years ago, when Republicans in Congress, buoyed by President Trump, were devising plans to repeal the Affordable Care Act and reshape such critical programs as Medicaid, senior officials in Governor Charlie Baker’s administration needed to know how to respond.
Secretary of Health and Human Services Marylou Sudders repeatedly turned to one person in the know: Robert Restuccia.
For three decades, Mr. Restuccia worked with industry executives and politicians from both major parties to push for greater access to affordable care for all Americans. He died at his Jamaica Plain home Sunday of pancreatic cancer, according to Community Catalyst, an advocacy organization he ran for 18 years. He was 69.
Sudders and Mr. Restuccia talked regularly in 2017 — he was one of the favorites on her iPhone — and those conversations helped her and the governor develop a strategy for combating any national proposals that could destabilize the Massachusetts health care system.
“It was like a source of truth coming from him,” Sudders said. “I completely trusted the information. That was the thing about Rob.”
Mr. Restuccia helped launch two Boston-based groups but was known nationwide. From across the country on Monday, health care experts, industry leaders, and current and former public officials mourned him and praised his years of work. They called him a key reason why Massachusetts now leads the nation in insurance coverage for its residents.
“Massachusetts today would be nowhere near what it is — one of the best, when it comes to health care — if it weren’t for Rob,” said former governor Michael Dukakis.
Dukakis was governor when Mr. Restuccia co-founded Health Care For All, a nonprofit group that advocates on behalf of Massachusetts patients and consumers.
At the time, health policy was being crafted with input from the industry, but “there was no voice at the table for consumers,” said Susan Sherry, deputy director of Community Catalyst.
Mr. Restuccia wanted to change that.
“Without question the thing he was proudest of is having people being harmed by the system speaking out and becoming part of the solution,” Sherry said.
Mr. Restuccia was executive director of Health Care For All from 1989 to 2003. The organization remains active on Beacon Hill and runs a help line for consumers struggling with medical coverage and costs.
From 2000 to 2018, Mr. Restuccia ran Community Catalyst, a sister organization that focuses on health care advocacy at the national level and works with groups in other states to promote consumer protections.
“There are millions of Americans who have unknowingly benefited from Rob’s work,” said Anthony Wright, executive director of Health Access California, an advocacy group. “Whether it is people who have Medicaid coverage, are no longer dealing with a surprise medical bill, are benefiting from a hospital charity program — those are people who may not have gotten that without Rob’s work.”
Mr. Restuccia also helped develop the idea behind Commonwealth Care Alliance, a Boston-based health care provider and insurer focused on poor and vulnerable populations.
He was particularly proud of the passage of a 1996 Massachusetts law that extended health insurance to all children in the state, which was funded by a controversial increase in the tobacco tax.
“I have not met an advocate since who was more effective,” said state Senator Mark Montigny, a New Bedford Democrat who co-sponsored that legislation. “Rob could come in the room with all these different personalities and no one pushed him around. I think people respected that he was in it for the right reasons.”
Another milestone in Mr. Restuccia’s career was Massachusetts’ 2006 law to extend insurance coverage to all residents, signed by Governor Mitt Romney, and the 2010 passage of the federal Affordable Care Act. He mobilized advocates to fight to support the ACA, which remains in place despite several attempts at repeal.
Mr. Restuccia was a pragmatist. He believed “you needed to work with all allies. You needed to build broad coalitions. You have to be cognizant of the political realities and move from there. I think that was what made him stand out,” said his wife, Emily Feinberg.
In addition to Feinberg, a nurse practitioner and professor, Mr. Restuccia leaves two children, Dan and Nina, and four grandchildren.
Mr. Restuccia grew up in a working-class neighborhood of Belmont. His family didn’t have health insurance, so they rallied together when someone became sick.
“Rob had a sense of, ‘We’ve got to help other people, we’re not in this alone.’ He developed a very strong sense of social justice as a child,” said his older brother, Joseph, a professor at Boston University.
Rob Restuccia attended Harvard University on a scholarship, graduating in 1971. He considered attending medical school, but after working as a hospital orderly and observing the struggles of patients without health insurance, he opted for a career in advocacy.
Mr. Restuccia sought to instill a sense of social justice in his children. His daughter recalled how he helped her form a student group to protest budget cuts in elementary school. She also received an unusual book as a Christmas present from her dad.
“I was pretty sure I was the only one of my friends getting the 10-year-old’s guide for being an advocate,” said Nina Restuccia, now 36.
Baker, one of many elected officials who worked with Mr. Restuccia, called him “a giant in changing the way people thought about health insurance.”
“He taught us that advocacy is about creating allies and finding common ground, and I will always admire the way he effectively went about his work,” said Baker, a former health insurance executive, in a statement. “The Commonwealth of Massachusetts will forever be a more kind and caring place because of Rob.”
Senator Elizabeth Warren, who met Mr. Restuccia when she was a law professor working on research about medical debt, said “Massachusetts lost one of its greatest champions and leading lights, but Rob’s legacy will live on in our fight to guarantee affordable health care to every person in this country.”
Mr. Restuccia was diagnosed in September — just weeks after an annual hiking trip to Alaska with his wife. He received treatment at Dana-Farber Cancer Institute.
He spent his last days in his bedroom, in the home where he and his wife lived for 38 years.
Mr. Restuccia wrote a moving essay that was published in the Globe last week.
“Mortality does not terrify me now,” he wrote. “For I can imagine my grandchildren one day living in a society where health care is a right and not a privilege, because of the many people who will continue to do the work that has been so important to me.”
A celebration of Mr. Restuccia’s life will be held at 10:30 a.m. Saturday at the First Parish in Brookline. Health care advocates plan to honor him at an April 30 fund-raiser at the Boston Park Plaza.Priyanka Dayal McCluskey can be reached at email@example.com. Follow her on Twitter @priyanka_dayal.