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Ten Things I Learned From Rob During a Lifetime of Health Care Advocacy

Miller, Michael, MPP

The Journal of Ambulatory Care Management: July/September 2019 - Volume 42 - Issue 3 - p 165–168
doi: 10.1097/JAC.0000000000000297
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Community Catalyst, Boston, Massachusetts.

Correspondence: Michael Miller, MPP, Community Catalyst, 1 Federal St, Boston, MA 02110 (mmiller@communitycatalyst.org).

This article is dedicated to the memory of Rob Restuccia and to preserving and advancing his legacy.

The author has disclosed that he has no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

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TEN THINGS I LEARNED FROM WORKING WITH ROB RESTUCCIA (AND WHAT WE ALL CAN LEARN)

Rob Restuccia had a remarkable career of social justice activism spanning more than 4 decades, which he continued almost up to the day he died. In addition to being a dedicated activist, he was a dedicated teacher and mentor, constantly nurturing the leaders and activists of the future. He was equally a student not only of health policy but also of advocacy strategy, always open to new ideas and assimilating experiences in an effort to do better.

Perhaps, the best way to honor his legacy is to carry forward his work. I hope through this article to make a small contribution to that effort by sharing some of the key lessons we learned over our more than 30 years together while building both Health Care for All in Massachusetts and the national advocacy organization Community Catalyst. My hope is that these lessons will help inform the strategic choices we must continually make as we seek to improve health and health care for all.

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Lesson 1: Consumer voice is essential to creating good health policy

When Rob began his work at Health Care for All more than 30 years ago, along with Susan Sherry, health care policy making in Massachusetts was a private club. The major economic actors—hospitals, doctors, and insurers and business—would hammer out a deal in private and then present it to the legislature as a fait accompli. That all changed with the creation of Health Care for All. Consumer activists forced their way to the negotiating table and the result in 1988 was the first attempt at universal coverage in Massachusetts. While some key portions of that law were never implemented, some, including new rules for hospital free care and coverage programs for people with disabilities, children with special health care needs, and the unemployed, became national models that continue to influence health policy to this day. The culture change in Massachusetts health policy making that was initiated then continues to ripple through the state and the nation today.

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Lesson 2: Faster and simpler is better

While many observers seemed surprised by the vehemence and persistence of the attacks on the Affordable Care Act (ACA) following passage, Rob and other veterans of health reform in Massachusetts were not. Something very similar happened during the first wave of reform in Massachusetts. By leaving a long lag between passage and implementation, the ACA left itself vulnerable to the attacks that followed. In addition, the rocky rollout of the ACA contributed substantially to negative public perceptions. The key lesson as we look ahead to the next generation of reform is that both complexity and a long time lag between passage and implementation should be avoided. Political winds shift frequently, but benefits once conferred are hard to take away.

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Lesson 3: You can be in left field, but you have to be in the ballpark

We learned many hard lessons from an unsuccessful effort to pass a single payer bill in Massachusetts during a debate on hospital deregulation. Not only did single payer not pass, an outcome we anticipated, but it also did not exert any real effect on the deregulation debate. Without a viable alternative, even legislators who had misgivings about deregulation backed it. From this we learned that moving the policy debate to the left (or the right for that matter) is not as simple as just “asking for more than you think you are going to get.” This idea, now often dubbed “moving the Overton window,” has become popular in the press but is overly simplistic. The final resolution of a dispute is not simply a matter of splitting the difference between two sides. The amount that each side has to move is a function not just of where it starts but also of the power it can bring to bear.

In addition, we learned that it is necessary to give policy makers something that they can support that can actually pass. Effective policies don't just emerge between the poles of a debate. Unless the work is done to craft feasible options and unless support is built for those options, they won't happen.

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Lesson 4: Allies can be found everywhere

Especially in the early days, when we were fighting for seat at the table, there was a tendency to think about consumer interests as being in opposition to the interests of other stakeholders. Over time, Rob became adept at finding common ground among diverse interests. There are many actors in the health care political “ecosystem,” and they often are at odds with each other. Rob realized that consumer advocates could often hold the balance of power when other stakeholders were in conflict.

He also became skilled at building productive relationships with diverse actors and creating broad-based coalitions. The key elements of his approach were to respect people's institutional limits—not demanding the impossible of them—while consistently pressing them to live up to the best that they could actually do.

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Lesson 5: The bigger the tent, the narrower the agreement

One corollary of building broad coalitions is the need to maintain focus. The more diverse the partners, the more limited the basis of agreement is likely to be. The fact that people may only agree on one thing does not in any way undermine the value of big-tent coalitions.

Consider the opposition to ACA repeal, which spanned nearly the entire universe of health care interest groups, from consumer and labor groups to voluntary health organizations to providers and insurers. The number of issues that all of these groups agree on is small, but their combined power was needed (and indeed was barely sufficient) to block repeal of the ACA. As I argue elsewhere in this issue, that same united power is likely necessary to finally establish a right to health care in the United States. While there are other vitally important health care issues to address, combining too many together is more likely to dilute than it is to enhance our strength.

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Lesson 6: Big things can grow from small ones

While it is essential to have a vision for the health care system we need, it is not essential to enact that vision all at once. Sometimes what looks like a relatively modest victory can contain within it the seeds of something much larger. A good example of this is the process by which a small program providing limited primary and preventive care benefits to a small number of children grew to become near-universal coverage for children in Massachusetts and was a key inspiration and model for the CHIP (Children's Health Insurance Program).

The program, Healthy Kids, was embedded in the bill opposed by Health Care for All because it deregulated hospital prices and especially because it capped financing for the Commonwealth's free care financing mechanism. It came on the heels of a crushing defeat for a state single-payer bill. The children's health provision was initially considered small comfort at Health Care for All, but almost immediately it became a vehicle around which we were able to organize families to press for broadening both the benefits and eligibility of the program. The success of the children's health effort in Massachusetts caught the attention of Senator Kennedy, who became a key leader in the congressional effort to pass the CHIP.

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Lesson 7: Collaboration is hard, but it is worth it

Building trust and productive working relationships is hard, not only across different stakeholders but even also within the advocacy community. Different organizations that are “on the same side” all have a need to distinguish themselves and get credit for their work with funders, members, and the media. They all have specific organizational imperatives and differences that while small in the scheme of things can still loom large when it comes time to work together. Rob was a tireless voice for building bridges across organizations and trying to get people to work together. Nowhere did that effort pay greater dividends than in the effort to create Protect Our Care. Immediately after the election of Donald Trump, Rob started working the phones tirelessly and in all directions—reaching out to everyone he knew in the advocacy world and across every sector from advocates to foundations, unions, hospital executives, and insurers. The rapid mobilization of Protect Our Care was a key ingredient of what many considered its improbable success defeating ACA repeal.

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Lesson 8: It's not just about affordable coverage

Coverage is critical, but universal coverage is not enough to fix our health care system. Over time, Rob became more and more aware of quality-of-care deficiencies in our system particularly for people with chronic conditions and disabilities. Together with Bob Master, a physician and pioneer in delivering care for frail elders and people with disabilities, Rob incubated Commonwealth Care Alliance (CCA)—a health plan designed specifically to meet the needs of people with multiple chronic conditions. Rob also made inclusion of Centers for Medicare & Medicaid Innovation and the Medicare and Medicaid Coordination Office key priorities for Community during the campaign for ACA passage.

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Lesson 9: Legislation and regulations are not the only ways to change health care

The incubation of CCA was only one of Rob's efforts to find new ways to improve health care. Too often, we think that changing laws and regulations is the only way to make a difference, but Rob saw other opportunities. In addition to helping launch CCA, Rob spearheaded efforts to change the relationship between drug companies and physicians that distort prescribing practices. Working directly with medical students and with academic medical centers, Community Catalyst, under Rob's leadership, was able to launch a national effort to reduce drug company influence on prescribing. The inclusion in the ACA of new rules requiring physician disclosure of gifts from drug companies was an outgrowth of this work. The key takeaway from this work is that acting directly to change the behavior of the health care delivery system can not only produce results but also subsequently lead to policy change.

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Lesson 10: It's all about the people

A key component of Rob's success was to be the opposite of transactional in his dealings with people. Rob was always genuinely interested in and cared about people as individuals, not just as a means to achieve an end. This applied to everyone Rob met, from individuals ill-served by the health care system, who he often encouraged to become activists, to junior staff at Community Catalyst and Health Care for All, to the CEOs of large health care systems. In the days since Rob's death, I have talked to dozens of people from all walks of life who wanted to share with me what Rob meant to them and tell me about the personal kindness he showed them. Although Rob was a fierce advocate for justice, his ability to connect to people on a human level undoubtedly was a critical contributor to his success as a leader and an example for all of us to follow, especially in these fraught and polarized times.

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