“Deep and Abiding Relationships” – Rob Restuccia’s Legacy

Advocates for change are not usually considered organization types. They staff the barriers, not the boardrooms, are seen as more comfortable with manifestos than meeting minutes, and often opt for confrontation instead of collaboration.

Rob Restuccia was different, and that is only part of what made his passing on March 3, 2019, difficult for the many who respected and loved him. An advocate by passion and an entrepreneur by necessity, Restuccia helped birth three organizations that have had a profound impact on health policy in his home state of Massachusetts and throughout the country. And those are probably not his greatest legacy.

Health Care for All Massachusetts (HCFA), which he led from its incorporation in 1989 through 2003, championed 1) the successful fight in Massachusetts for passage of the nation’s first universal coverage law (later reversed); 2) Medicaid coverage expansions for people with disabilities, children with special needs, and unemployed individuals; and 3) the program that would become the model for the federal Children’s Health Insurance Program.

Community Catalyst—which like HCFA was founded by Restuccia and his co-conspirators Kate Villers, Michael Miller, and Susan Sherry—took the issues to a national level, nurturing consumer health care coalitions in 40 states and preparing them for local and state advocacy with information and organizing tools. At the same time, Restuccia and his colleagues weighed in with passion and credibility at the federal level on the passage and defense of the Affordable Care Act (ACA).

Finally, Restuccia and his friend and work partner Bob Master were not satisfied with prospects for people with special health care needs when the private and public sectors embraced a managed care strategy in the early 2000s. Their respective organizations—Health Care for All and the Boston Center for Independent Living—took the audacious step of forming a new health plan. Commonwealth Care Alliance (CCA)* focused uniquely on the needs of adults and elders with disabling medical conditions. CCA’s care delivery model has become a national benchmark for plans and providers working with these populations.

Regardless of the effort, there were at least three bedrock principles for all of Restuccia’s work. The first was consumer engagement. He believed fiercely that people affected by decisions and systems should be involved in their proposal, design, and implementation. He dismissed paternalistic comments from executives and policymakers alike that health care was complicated, and knew the power that well-informed and organized patients and families could have in policy formation. “Rob moved beyond the traditional health care advocacy issues of access,” said Ann Hwang, who was hired by him to run the Center for Consumer Engagement in Health Innovation at Community Catalyst, “to think about how to engage consumers in health plans and in delivery system reform debates.” When Community Catalyst announced Rob’s death, it was with his urging that readers “Don’t mourn. Organize.”

The second principle was collaboration. Although Restuccia could have sharp elbows—he helped organize the Prescription Access Litigation Project, which successfully sued pharmaceutical industry players before it was fashionable to eliminate inflationary price setting practices—it was not his first instinct. He would rather join forces for a common goal.

Among his main collaborators were leaders in government—that is, if they had the consumers’ interest at heart. “I got to know Rob when I worked for Massachusetts state government after the ACA, when we were having terrible problems with our state-based exchange,” said Hwang. Although he could have clobbered the administration, he worked with them instead—listening to their plans and holding them accountable. “He did not pull punches and he was pragmatic,” said Hwang.

Mary Lou Sudders, the Massachusetts Secretary for Health and Human Services, relied on Restuccia for intelligence and strategy during the 2017 “repeal and replace” debate, when the ACA’s repeal could have had disastrous consequences for the state’s budget and its health care policy. “It was like a source of truth coming from him,” Sudders told the Boston Globe. “I completely trusted the information. That was the thing about Rob.”

Underlying all this work, however, was a deep sense of relationality. Restuccia cared about individuals as much as he cared about issues. “He had deep and abiding long-term relationships with all kinds of people,” said longtime colleague Nancy Turnbull, a faculty member at the Harvard T.H.Chan School of Public Health, “and he kept the relationships separate from the issues.”

Restuccia was the ringleader of a Sunday breakfast club with a rotating cast of health policy aficionados in Boston. Following his lead, those meals became a safe place for a few men to both strategize and let down their guard. “Everyone in this room knows the essential Rob,” recalled Len Fishman, one of the regular breakfast attendees, at Restuccia’s memorial service. “Low-ego, understated, generous, more interested in listening than talking, making room for everyone. So, imagine the world behaving like Rob, for a couple of hours—with coffee, an egg-white omelet, and home fries. That’s what our breakfasts were like.”

That spirit continued beyond Sunday mornings. “Rob could be incredibly confrontational—in the best possible way, said Turnbull. ”And when he had to advocate against someone—which he would do if the situation demanded it—they respected it because of the deep relationships he had cultivated with them over time.”

That may be the most valuable lesson for people advocating to improve the health of populations. Massachusetts usually comes out near the top of national state health system performance surveys. It has the fifth highest life expectancy rate of any state in the country. Skeptics might point to the strength of its economy, the not coincidentally high costs of health care, and all the would-be health policy experts wandering around the Boston area.

I suspect, however, that these factors only partially explain the Bay State’s superior performance. People I spoke to for this piece consistently noted the length of time participants in the state have been working on issues of health care access, performance, and outcomes. They spoke of the importance of having consumer voices at the policymaking table. And they spoke of the trust that is built when people do not always agree, but find they can respect one another as individuals. Because of those deep and abiding relationships, health care leaders and consumers in the Bay State return to keep working on issues of common concern.

More than the tens of millions of people who have health insurance because of the ACA, or the millions of people in Massachusetts who have better health benefits because of his advocacy, this path to civic trust may be Rob Restuccia’s greatest legacy.

* Chris Koller serves on the Board of Commonwealth Care Alliance.