From Patient to Advocate: A Chat with Cindy Steinberg

Cindy Steinberg is National Director of Policy and Advocacy at the U.S. Pain Foundation and Chair of the Policy Council of the Massachusetts Pain Initiative. In April, 2015, she was appointed to the Interagency Pain Research Coordinating Committee (IPRCC), the highest ranking pain policy oversight committee in the US. In addition to her federal and state pain policy work, she has lived with chronic pain for many years and runs a support group in the Boston area for others with chronic pain. Steinberg spoke recently with Neil Andrews, Executive Editor of RELIEF, to discuss her own experience with chronic pain, her advocacy efforts to advance pain care and research, and what people can do to get involved to help raise awareness of chronic pain. Below is an edited transcript of their conversation. 

What is your own personal experience with chronic pain?

I had a business career that I loved managing the development of multimedia technology-based learning systems. I was working in the office one day and there were moving men present who were dismantling cubicles, since my company was moving to a new office. I went to retrieve a file from my filing cabinet, and unbeknownst to me, the movers had been placing cubicle walls against the back of my file cabinet. The file cabinet was very large, and I couldn’t see that the cubicle walls were resting on it. I went to open a drawer, and all of a sudden the file cabinet started coming at me. I turned to get away, but I wasn’t quick enough. The drawer struck me in the middle of my back, and then I was crushed underneath the cabinet and the walls, which severely damaged my back. This happened more than 15 years ago, and the result is that I’m living with pretty serious pain—there hasn’t been a day that’s gone by since the accident without pain.

What was it like seeking treatment for the injury?

The accident badly damaged nerves and ligaments in my back. I started looking for help by going to orthopedists, and most of them said it would have been better if I had broken my vertebrae, which heal better than the soft tissue damage that I sustained. So they sent me to other specialists, and I went from doctor to doctor, most of whom said they couldn’t help me, or doubted what I was saying. I was incredulous that a physician could suggest that I would make this up! I tried many different types of injections recommended by pain clinics, such as nerve blocks and steroid injections, but they did not diminish the pain. I tried alternative treatments too, and yet I still had this terrible level of daily pain. This search for pain relief went on for five years.

I finally found an osteopath who specialized in musculoskeletal injuries and pain, and he was terrific; he was the first person who really listened to me. He said there were different treatments we could try, and that he would work with me to get my pain to a manageable level. He was insistent that I give up my career, because otherwise it would be difficult to manage the level of pain I had on a daily basis. It was extremely hard for me to walk away from my career, but I did. I realize, in retrospect, that he was right.

After years of searching for a solution, a cure for my relentless daily pain, I came to the realization that there was not going to be one. My injury had long since resolved, but what I was left with—chronic pain—was in fact a disease of the nervous system and brain in and of itself, and I was going to have to learn to live with it, perhaps for the rest of my life. That realization hits people really hard. I felt as if I was looking at the rest of my life as a black tunnel from which I would never escape.

Why did you start a support group for people with chronic pain?

I didn’t know anyone else who lived with this much pain, but I knew that I couldn’t be the only one. So shortly after I left my career, I hung a sign up at a local library to find others with chronic pain who would be interested in coming to a support group. I arranged for a room at the library and sat down and waited. People started coming—there were more and more each month—and they suffered from every possible pain condition: migraine, carpal tunnel pain, cancer pain, arthritis pain, back pain, pain from nerve damage, complex regional pain syndrome, and on and on. I had no idea there were so many conditions that give rise to chronic pain and that so many people were living like this. I started the support group 15 years ago, and it’s still going.

What concerns do people in the support group voice?

More than 300 people have come through the group so far. At any one time we have about a 65-person active list, and everyone tells the same story: they went to at least four or five practitioners before they could find help. And no one believed them—they were told that they were malingering. It’s a horrible experience, since not only do you live with terrible pain that’s not going away, but also the very people you seek help from don’t believe you. Everyone who comes to the group for the first time is amazed and sometimes overwhelmed with emotion because they have finally found others who share their experience. They feel so validated.

What else is unique about the experience of chronic pain?

While other illnesses, such as cancer, can be very serious, people do receive treatment, and they’re able to work, earn an income, engage in social activities, and continue their lives. The terrible thing about chronic pain is that, while it might not be terminal, in essence, the life you had is terminated. People with serious chronic pain often can’t work and earn an income, participate in social activities with their family and friends, or care for their children. They suffer loss of self-esteem. Chronic pain affects all of your relationships, and people become incredibly isolated. Many people are confined to their homes, and their world gets smaller and smaller. It’s devastating.

How did your advocacy work come about?

It grew out of my own experience with chronic pain, along with seeing so many people each month with so many different chronic pain conditions—yet, everyone had the same experience as me. I realized that chronic pain was a much bigger problem than generally known, and that I had to do something to change it on a larger scale and that was really at a policy level.

What type of advocacy activities are you involved in?

I’m doing policy-related work both at the state and federal levels. At the state level, I work with lawmakers to introduce bills or modify existing bills that do or could have an impact on pain care. I also work with public health officials on activities related to pain, such as prescription monitoring program regulations or licensing board policies. I was appointed by Massachusetts Governor Charlie Baker to his Opioid Working Group. The group produced a set of 65 recommendations aimed at reducing drug abuse, misuse and addiction that his administration is currently implementing. I was subsequently appointed by Governor Baker to serve as a commissioner on the state’s Drug Formulary Commission.

At the federal level, I’ve testified at the FDA [US Food and Drug Administration], and have also served on FDA-related committees. I am now serving on a pain research committee at the NIH [National Institutes of Health]. I typically go to Washington, D.C. once a month, to meet with lawmakers to educate them about pain both in the civilian population and in our service members returning from battle.

Have advocacy efforts focused on pain made a lot of progress at the federal level?

Yes—there have been some important accomplishments. For instance, many pain advocates worked with federal lawmakers years ago to craft the National Pain Care Policy Act (NPCPA), which drew attention to several fundamental problems; these include a lack of pain research, poor use of existing knowledge about pain, very little education in healthcare professional schools about pain management, a lack of public awareness about chronic pain and a lack of effective treatment options. The NPCPA was passed in the House of Representatives, but it didn’t get through the Senate, which was a disappointment.

But, ultimately, some provisions of the NPCPA were incorporated in the Affordable Care Act (ACA), including funding and authorization for the Institute of Medicine (IOM) study on pain and the formation of the Interagency Pain Research Coordinating Committee (IPRCC), which was significant progress. The IOM report, Relieving Pain in America, has now evolved into the National Pain Strategy [see below]. So there has been some progress, which is great. I wish there were more, but at least these milestones have been achieved, at the federal level.

You mentioned the IPRCC, to which you were appointed. What is the work they are doing?

The IPRCC oversaw the creation of the National Pain Strategy and has begun work on a strategic plan for pain research. Just when I joined the IPRCC, it had finished an analysis of the federal pain research portfolio, looking across federal agencies at the full breadth of government-sponsored pain research. The analysis illuminated gaps in the research portfolio and opportunities to advance the research agenda.

What is the National Pain Strategy?

As I mentioned, the NPS was an outgrowth of the IOM report. A key recommendation of that report was the creation of a comprehensive, population-health level strategy for pain prevention, treatment, management and research. The NPS addresses six main areas, including professional education and training, public education and communication, service delivery and reimbursement, prevention and care (which was the piece that I worked on), disparities [in pain occurrence, assessment, treatment, and outcomes], and population research.

What does the future look like for the NPS?

A draft of the NPS was released for public comment in the spring of 2015. The public comment period closed in late May 2015, and it is now being revised based on those comments. We expect a final release sometime in early 2016. Then our focus will be on funding and implementation. It’s a great piece of work, and I believe, if implemented, it would vastly improve pain care. But, we will have to push hard for it, and it will require a great deal of advocacy. Funding is hard to come by, and so it remains to be seen whether the NPS will be implemented.

What successes have you had at the state level?

One very gratifying achievement was working with lawmakers to enact legislation requiring pain education for all physicians in Massachusetts. We are one of the few states to have this recurring requirement. Every two years doctors in Massachusetts must take three hours of continuing education in pain management.

We have also worked hard to get all of our prescribing boards to adopt pain policies. In the recent report from the Governor’s task force that I mentioned earlier, there is a statement right up front about its intention to ensure access to medications that can help people living with pain. There are also other positive pain-related provisions in the task force report such as promoting awareness of and support for integrative and alternative pain management therapies.

Is there any other advocacy work of note going on now?

On the veterans’ side of things, advocates were successful in passing the Veterans Pain Care Act several years ago in response to the need for better pain management in our veteran population. Because of more sophisticated equipment such as body armor and improvements in battlefield medicine, our service members are surviving injuries, like those sustained from improvised explosive devices, that might have been fatal in past conflicts. However, large numbers have returned from battle with significant damage to their central and peripheral nervous system, often compounded by traumatic brain injury and polytrauma [injuries to multiple body parts and organ systems]. Over the last decade, 60% of our service members returning from Iraq and Afghanistan are afflicted with serious chronic pain conditions; it’s the number one health challenge facing veterans. As a result of past efforts, the Veterans Health Administration (VHA) put forth an excellent system-wide, comprehensive pain management plan called the Pain Management Directive.

Under the Directive, among other important advances, the VHA began instituting a stepped model of care that provides a continuum of pain treatment from primary care with system supports and patient and family education, to secondary care with specialty consultation, to tertiary, interdisciplinary care with advanced pain diagnostics and interventional and alternative techniques. Although implemented in some parts of the VHA network, the Directive has not been fully instituted across the entire VA. Unfortunately, the Directive expired in October of 2014 and has yet to be reauthorized.

When issues arose regarding veterans’ access to specialty care and wait times to see specialists, pain management was one of the areas of concern. Apparently there is a serious shortage of pain management expertise across the system. I put together a letter to the Undersecretary for Health at the VHA, asking that pain care be designated as one of the “critical clinical areas” in the Veterans Access, Choice and Accountability Act and that the VHA Directive be reauthorized and implemented, and was able to get 26 pain-related organizations to sign on to it.

Overall, are efforts to improve pain care for veterans succeeding?

Yes. Better pain care for veterans is an issue that people are very sympathetic to. In particular, members of Congress, even if they don’t have personal experience with pain, understand the need to address this problem. As I noted, there is some really good work going on in certain pockets of the veterans’ health system, including the stepped care model for pain management, which was specifically cited in the National Pain Strategy as an exemplar model for pain care. They have made great progress in incorporating integrative and complementary therapies such as acupuncture, cognitive behavioral therapy and massage therapy in certain pain centers. While I wish all of these forms of pain care were available on a larger scale, they are making good progress, and I remain optimistic.

What is it like working with lawmakers for your advocacy work?

I’ve learned that personal stories and personal experience matter a lot. For example, one individual who really helped us on the NPCPA, and then getting provisions from the NPCPA into the ACA, was a congressman whose brother suffers with terrible migraines—he took an interest in pain because of his family member’s experience. If lawmakers have a family member suffering from pain, or if they themselves have had an experience with chronic pain, then they are incredibly sympathetic. Also, advocates’ personal stories are powerful and move lawmakers to action. It is important and helpful to have thoroughly researched epidemiological data, but it is difficult to understand the implications of that data, in terms of the devastation chronic pain causes to so many Americans’ lives, until you translate it into an individual experience.

What are the challenges in working to raise the profile of chronic pain in society?

The biggest challenge is that some medications that help many people with pain are abused by others without pain. So it has been a huge challenge to make the conversation balanced. There is tremendous media hype around abuse that really hurts people with pain—it stigmatizes them. I receive frequent e-mails and calls from people looking for help who say their doctor will no longer prescribe a medication that makes it possible for them to function and enjoy some quality of life. They may be accused of drug seeking simply because they ask for a medication that has helped them to function.

During the 15 years that I’ve run my pain support group, I have never met anyone who has come to the group that was addicted to pain medication. Opioids do not help everyone with chronic pain and for those they do help, they do not completely take the pain away. But, many pain sufferers use them safely and effectively. My guess is that probably around two-thirds of people living with severe chronic pain rely on some form of opioid, in combination with other treatments to control their pain.

I am saddened that many of these people with debilitating pain conditions can no longer access a treatment option that has lessened their suffering. This issue points to the urgent need for research to discover more effective treatment options for millions of Americans whose lives have been limited by chronic pain.

What other thoughts do you have about advocacy?

I really believe that one person can make a difference—that’s why I’m doing this work. The fact that so many Americans cannot find adequate care for their pain points to the enormity of the need. But while individual efforts do matter, in order to bring about vast improvements in pain care and major advances in pain research, people with pain, pain professionals who care for them, and loved ones who care about them will all need to speak out and get involved.

I often point to the astounding advances brought about in the understanding of and treatment for AIDS as a great example. AIDS was a terribly stigmatized illness that was poorly understood. Its victims suffered a great deal. But all of that changed because people suffering from AIDS and those that cared about them spoke out, drew attention to the problem and demanded action. Their advocacy changed attitudes and fueled research funding, which resulted in effective treatments for AIDS. It is now a condition that people can live with. When it comes to chronic pain, unfortunately, many people can’t speak up, because they’re so disabled by it. But for those who can, I encourage them to do so.

What are some examples of people getting involved?

I do policy work for the U.S. Pain Foundation, a non-profit organization serving people with chronic pain and their families and caregivers, with approximately 70,000 members nationwide. The Foundation has an ambassador program with about 200 ambassadors representing some 48 states. They act as “point people” in their state to raise awareness of pain, educate others and participate in advocacy activities.

I also encourage people to speak to their lawmakers and to testify at hearings on bills that will affect them. As part of the Governor’s task force, there were hearings around the state and about a thousand people showed up to participate. I encouraged people in my support group to come speak out, and they did. When I go to visit lawmakers, I take people living with various chronic pain conditions with me so they can tell their personal stories. When they discuss their own experience, and how proposed provisions of a bill will affect their lives, it’s very compelling to a lawmaker.

Another important advocacy activity I encourage our members and others in the pain community to engage in is writing into open federal dockets on issues or proposed actions that could affect them. For example, the NIH opened a federal docket for comments on the National Pain Strategy. Those comments were reviewed and changes were made based on comments that were received.

What skills or knowledge do patients need to be effective advocates, and what advice do you give them?

Communication skills are paramount. Probably the most important skill is to learn to deliver your message succinctly. You want to explain why you care about the issue but it is not necessary to go into great detail. Figure out the most important message you want the staff member or lawmaker to remember and stay on message. State your “ask” clearly. Your “ask” is what you want the lawmaker to do after your visit.

Written communication skills are essential as well. Successful advocates are skilled at using traditional and social media to deliver their message. Take the time to convey your perspective by commenting on blog posts or writing a letter to the editor. Writing an op-ed to appear in a major news outlet or tweeting a particularly compelling story that you find are all important opportunities to advocate for improvements in pain care and more significant investments in pain research.