By David Nagel, MD
Author: Needless Suffering, How Society Fails Those with Chronic Pain
Lost in perhaps the most interesting presidential campaign in my fifty-seven years is the fact there were a lot of other local, state, and federal elections going on at the same time, all with the potential to shape our lives for the better or worse. In fact, there are about 520,000 elected positions in the United States. That leaves a lot of room for citizens to participate in the political process either to serve as an elected official or to advise those who are. On an almost daily basis, I hear individuals complain about those who do serve. Too often, those who complain have no interest in serving, sharing their views directly, or even voting. As one of my friends once said, if you aren’t going to get involved, don’t complain about those who do. If you choose to serve, you have my admiration, no matter what your beliefs. That is not what I want to talk about. Rather, I want to talk about why the rest of us need to share our beliefs with those elected and how to go about doing it. For those in pain and those who serve them, there is no more important time that the present. Public policies designed to address the “opioid abuse crisis” are sweeping the nation, too often harming those in pain. There are many other policy issues with the potential to help or harm those who suffer, and these need to be addressed as well.
To explain why, I want to share one of my personal lobbying experiences. About six or seven years ago, I was asked to go to Washington, DC as a contingent of pain professionals tasked to lobby our congressional representatives about the merits of the National Pain Care Policy Act (PCPA) of 2009, which had been passed as a part of the Affordable Care Act (ACA). This was my second lobbying experience in Washington, each time representing my state of New Hampshire. Contrary to popular belief, most lobbyists are actually unpaid individuals who really care about the issues they represent and wish to share their perspectives about them. Our mission was a bit unique. The PCPA had already been passed, but not appropriated. Unlike the broad ACA, the PCPA actually enjoyed bi-partisan support, and had for most of its twelve-year existence. It called for:
- Creation of an Institute of Medicine conference to look at the provision of pain care in the United States. The findings of the conference which resulted were released in a document entitled “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” in 2011 and resulted in the National Pain Strategy (NPS), published in 2016.
- Improve education in pain management for health care professionals
- Improve pain research agenda for the NIH.
Our job was to educate our congressman about the merits of the bill and to make sure it did not die in appropriations. A colleague and I met with the health care representatives for each of our state’s congressman. Our visit to Washington was akin to a journey to Oz, where we quickly found out that not only were our wizards not all powerful, they were somewhat ignorant. The individuals we met with knew very little about the ACA. They knew nothing about the PCPA. To their credit, they wanted to learn, and they asked a lot of questions. We could answer their questions about the PCPA. We struggled with the questions about the ACA.
I would call this a learning experience. I left Washington with a new understanding of politics. We elect our politicians to do a job, one that is complex as each issue they address has multiple and sometimes contradictory perspectives. It would be nice to think of each politician as an expert on every issue they vote on. The reality is that is not true. They need to be educated. In making policy, they seek to find a balance, and can optimally do so only if they hear from those who represent those various perspectives. Those who do not share their perspective represent a political blind spot which will be missed in the final decision making process. In the world of chronic pain, too often the patient’s perspective is the one left out. That is something the NPS seeks to remedy thanks to the action of an increasingly united group of consumer advocacy groups. It is my responsibility as a citizen to share my strong beliefs with those who serve. I also came to understand that in any legislative body, there are those who have more expertise on a specific issue, and the members of the body, as a whole, place great faith in the opinions of those experts for good or bad. As my elected officials were not viewed as experts on the ACA or the PCPA, it was not surprising they knew little about either issue. What concerned me was how willingly they blindly followed the leader in making their votes. Still, this reality creates an opportunity; for advocacy to be effective, those leaders viewed as experts on a relevant issue need to be identified and targeted.
With the election of 2016 in the rear-view mirror, a number of political issues are of importance to those with chronic pain:
- What will happen to the directives of the PCPA and the NPS?
- What will happen to the medical marijuana laws created now by 29 states and the District of Columbia?
- How will public policies directed at the opioid abuse crisis affect those who suffer with chronic pain?
- How will proposed changes to the ACA affect those who suffer from pain?
I am hardly an expert on effective lobbying, but in my experiences at all levels of government, I have come to understand some basic rules.
- A voice only has value if heard. It is both your right and your responsibility to share your strong beliefs with your legislators. While meeting with legislators can be nerve-wracking, it is very important, and sometimes the smallest of voices can change everything for the better, but it will only do so if it is heard.
- While letters are helpful, face to face communication is much more valuable.
- Make your pitch personal. When we met with our legislators, we asked them to think of someone in their lives who suffered from pain and how it affected him and those around him. Legislators have a tendency to think of the “macro” picture when making decisions. It is critical that you make them understand the “micro” one; how their decisions affect the individual.
- Be knowledgeable about your topic. If you are, you will be listened to, and, more importantly, you may come to be sought as source of information.
- Be as objective as possible. Aristotle is attributed with saying that “law is reason free from passion.” Passion drives you to the legislator’s office, but objectivity convinces him that your cause is worthy.
- At the same time, be passionate about your cause. That will make your presentation memorable.
- Be concise. Legislators are very busy are more likely to listen to a short, and to the point presentation.
- Be available. As you are leaving, give the legislator your contact information and promise to be available if needed.
- Don’t be disappointed if you talk to an aid. The legislator’s policy agenda is shaped by the experts they rely on, so that person is very important to you, probably more so than the legislator.
- Safety in numbers is important. Your presentation means more if you are either representing a larger group or are part of one. Make sure you share your group’s information with the legislator. Be careful not to “stray off the reservation.” While your personal beliefs have merit, if you are representing an organization, make sure it is that collective view you share.
- Identify the key legislators who oversee the issue you are bringing and target that individual with your presentation. Your time is valuable, and targeting individuals with little influence wastes it.
- Have patience. You won’t always be successful in getting what you want, but sometimes you will. Your efforts will always sway the argument, whether you know it or not.
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I have been practicing pain management for the past 28 years, and have been involved in advocacy and policy development for a good part of that time. While my advocacy role has been peripheral for the most part, I have been able to make a difference. Recently, I wrote a letter to my Governor and my Senator about the harm public policy initiatives targeted at reducing opioid abuse are doing to those who suffer from pain of all sorts. While I was ignored by my Governor, I received a beautiful thank you from my Senator “for all the work I do on this issue.” It is exciting to see advocates of those who suffer from pain come together to create a louder and louder voice, one that is making significant change, one I encourage you to become a part of. The challenges have never been greater.