Executive Vice President and Chief Medical Officer at the Kessler Institute for Rehabilitation and Distinguished Member of the AAP
How did you get started in your advocacy efforts?
It started because I was worried about my patients. I was having problems with insurance companies, even back in the ‘70s that were not willing to pay for things that I thought were important and essential. When I was heading the program at Tufts New England Medical Center, I had children with Cerebral Palsy who needed non-vocal communication devices to speak. The Medicaid program was refusing to pay for these devices (some of which we were inventing). I was unwilling to take ‘no’ for an answer, so I reached out to the Boston Medicaid office, and found the person in charge. She also shared with me the challenges they were having with unscrupulous vendors and fabricated prescriptions. I told her she could fix that by creating a standard set of questions and having someone who understands the clinical side. I then became a consultant to Medicaid to help them do all that. I discovered that being an advocate for my patients was something you had to do to get them what they needed. I also discovered that the people I needed to educate didn’t know a lot but still have a big responsibility. I found you can make a difference if you educate people and treat them with respect.
Shortly after, I was invited to join the health policy and legislation committee at AAPM&R, and worked my way up. I started going on Hill visits with the Academy, and it was scary at first. Once you meet staffers and members, though, you realize they are people, too, who chose a pathway of service. Most of those people really care, and it helped me develop sustained trust and confidence. I saw how important an informed voice could be. I gradually learned how to articulate how things could be better through policies and positions. I also learned that aggregating your force (like with the AAP, the Academy, state hospital association, AMRPA, etc.) can be more effective than being a single voice.
Much of advocacy is a relationship game. You become more influential and more effective if you have long-term relationships. It’s not a sprint, it’s a marathon.
When you’re trying to influence someone in the government, data is great but much of your ability to be effective is through stories. In all levels, you need to combine your data with stories and build relationships.
What skills learned during your medical training have helped you in your advocacy efforts?
There’s not a lot in medical training that correlates with advocacy. In PM&R, we cultivate in our physicians the abilities to communicate, work in teams, and see people in the context of their family and society. We, by nature and nurture, are able to manage people collectively and collaboratively to see the big picture. That helps in understanding the politics of disability, as well as special interests and internal competition.
What challenges have you encountered?
If you aren’t good with delayed gratification, you won’t be good with advocacy. You hardly ever walk away from one meeting thinking, ‘we’re done, we won.’ It’s the journey as much as the destination that you’re trying to get to. You will always have to deal with frustrations. There is also a lot of mobility among the staffers and elected individuals, and your relationships may move on. You’ll have to start over again and reteach.
How did you get involved with national Public Policy Committees?
Our specialty is small today, but it was really small when I was getting started. I trained in Seattle and the Chair, Dr. Justus Lehmann, was always flying off to Washington, DC. I saw him constantly coming back with grants and stories. That was a period of time when there was a lot of Congressional endorsement in growing the field of PM&R. He was a role model and a lot of our faculty were very involved in the Academy. I was fortunate enough to know people who invited me to get involved.
Have you developed any surprising relationship/s through advocacy?
I have developed significant relationships with elected individuals. I have strong political opinions, but am not a political person. I found that I had to be engaged in the political process, as well as the advocacy process, to be prepared. I developed long-term relationships with people getting elected, and I was being asked to make contributions to political campaigns. I got to see the whole ebb and flow of that process and developed great admiration for people in those positions. You get a vested interest in helping to re-elect people who are strong advocates, but sometimes you have to pick and choose your issues. There was a Congressman who was extremely supportive of rehab issues because he had been nurtured by rehab docs and had a personal experience with his mother being well-served by a rehab hospital. I got to know him very well and took my wife to a fundraising event for him in Philadelphia. People were thanking him for his support of the NRA, and I had to segment my feelings because he was such a strong champion.
How have you seen advocacy change over your career?
Right now, advocacy is much more political and polarized than it was when I got started. Dealing with Congress is a lot harder than it used to be. The politics used to be in the background and the issues and needs of people were in the foreground. The people I dealt with were more worried about governing and doing the right thing, focusing on the core of the issues. It’s gotten a lot more hostile and less comfortable. Since 9/11, security changes have also made it a lot harder to get into public buildings. The way forward is sticking to the issues and keeping it human. Anticipate the influence someone will have and try to organize your arguments and information in the way that will be best received by them given their political views.
Should all physicians be active advocates? Why?
It’s part of the job. You have to advocate for your patient no matter what specialty you’re in. It’s part of our role and responsibilities to act in the patient’s best interest, which means taking an active role. Whether it’s advocating to the patient about doing the right thing, advocating to their family, calling the power company when their electricity goes out, etc. We have a deep responsibility to help our patients, not just make money off of them.
What advice would you give to someone just starting out?
Find a mentor who is involved in some level. I get calls from people quite frequently who ask me to meet with them and give insights. I had a call yesterday from a former medical student who is frustrated with the policies in her state about nursing homes and rehab. I helped her understand how to become a more effective advocate. Find people of a like mind, volunteer and get involved. Who do you know who’s already in state government? Go speak with them.
One voice is important, but many voices together can be more effective. Look for opportunities to volunteer with the AAP, go to the Annual Meeting sessions that pertain to advocacy, etc.