New Advocacy Group Seeks Smarter Solutions to Pain Crisis

By Pat Anson, PNN Editor

If you’re like me, you are puzzled at times by the sheer number of patient advocacy groups working on behalf of pain sufferers. There are dozens and they all have the same goals: improve the quality of pain care and give patients a voice in a society that seems to have turned its back on them.  

Most of these groups are primarily run by one or two people, have little to no funding, no board of directors, no mission statement and no website. What they lack in money and organization, they make up for in passion and personality driven posts on Facebook, Twitter and other social media, sometimes attracting thousands of followers.

But all too often, the online discourse turns into endless bickering between advocates that accomplishes little for the pain community. Tired of the infighting, some advocates stop advocating and drift away.

A new patient advocacy group was launched this week that is trying to change that. The National Pain Advocacy Center (NPAC) is a 501(c)(3) non-profit led by Kate Nicholson, a pain sufferer and civil rights attorney, who emerged as a patient advocate in 2017 with an inspirational TedTalk that explained how opioids helped her walk again after a botched surgery.  

KATE NICHOLSON

Nicholson has been working publicly – and quietly behind the scenes -- ever since, meeting with legislators, healthcare providers, academics, civil rights advocates, and people with pain. NPAC is an outgrowth of the many connections she has made.

“There are people I have worked with over the last few years on select projects. And I think we all felt we had sort of reached our capacity to work as individual actors. We needed to make a change and come together,” Nicholson explained.

“We needed to advocate more broadly for better treatment for pain. Because even though we were able to stop a bad policy here or there, it was a little like whack-a-mole. They just keep coming back. We needed a broader reach.”

NPAC has a large and diverse group of volunteers on its board of directors and advisory councils; including some familiar names in patient advocacy, such as Laura Mills, Leo Beletsky, Stefan Kertesz, Sally Satel, Anne Fuqua, Jennifer Oliva, Chris Freeman and Sean Mackey, to name just a few.

The advisory councils are so inclusive they include several people who have struggled with substance abuse or work in addiction treatment – which might get some push back from others in the pain community. Nicholson says both pain and addiction need to be addressed if NPAC is to be seen as a credible organization.

“Anytime you meet with policy makers, these two issues have become intertwined in the public conversation because of the way the story about opioids has been told,” she told PNN. “I’m not one of those people who think that no one got hurt because of liberal prescribing. There are people who are susceptible to addiction. I see it as two very stigmatized groups who need to band together to some extent because right now the infighting is causing everyone to go down, really.”

NPAC has gotten some grant money from the Open Society Foundation, another association likely to be questioned because it is funded by liberal philanthropist George Soros, a billionaire who is a magnet for right-wing conspiracy theories.

Nicholson has pledged to never to accept funding from pharmaceutical companies or other organizations that may create a conflict of interest – real or imagined -- with NPAC’s mission.

“Our goal is to change minds and shift policies,” says Nicholson, who serves on a panel advising the CDC as it makes revisions to its controversial 2016 opioid guideline. She says the current state of research and understanding of pain is in “the Dark Ages.”

“My own feeling is that pain needs rebranding. If we really think chronic pain is a disease, then shouldn’t we be calling it something different? We don’t call depression ‘chronic sadness’ even though everybody feels sad,” Nicholson said. “I really feel like there needs to be a shift in how we talk about pain and how we understand it. There really needs to be a much bigger conversation than just one treatment modality.”

How Rx Opioids Helped Me Work Again

By Kate Nicholson, Guest Columnist

I recently told 2,200 intimate listeners during a TED Talk how a surgical error left me in severe pain, unable to sit or stand, and largely bedridden for almost twenty years.

I also explained that with appropriate pain management, including treatment with opioids, I continued working as a high-level federal civil rights prosecutor despite my physical limitations. I won important arguments in federal court, arguing from a folding lawn chair. I drafted the current regulations under the Americans with Disabilities Act (ADA), coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country from a computer screen and well-camouflaged bed.

And when my pain finally improved, I stopped taking opioids.

A part of me was not eager to go public as someone who used opioids, for the same reasons that I was initially reluctant to take opioids for pain. Opioids carry a stigma, one that is only increasing today in an era of opioid abuse.

The increase in prosecutions and the oversight of physicians, and the difficulty people in pain today experience in getting appropriate pain medication motivated me to tell my story.   

My story of pain began 23 years ago. I was working at my desk in the Civil Rights Division of the U.S. Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain.

Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of 30, just a few years out of Harvard law school, I could barely stand and sitting was impossible. So, I began to conduct my life lying down. For a while, I was able to commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Then for many, many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the ADA, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My pain began in the 1990s, when the pendulum on pain swung decidedly in the opposite direction of where it is today.  I had access to the best doctors and to treatment at a pain management clinic. My physicians tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations and a surgery to separate nerves from adhesions. Nothing restored my mobility or diminished the pain.

Early on, I refused to take opioids.  I was worried about addiction and stigma.  When my doctors initially approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate. 

As soon as I took opioids, I improved. I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again.  I also never developed a tolerance, requiring more medication for the same level of pain relief. 

Opioids did not heal me. Integrative treatment over a long period of time did.  But opioids gave me a life until I could find my way to healing. Importantly, they allowed me to continue to work.  

I understand that opioids are complicated. People are different. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But today we have no such balance: our media attention and public policy focus singularly on abuse.

Serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse.

I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson lives in Colorado. She served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. 

Kate is currently writing a book about her personal experiences with severe chronic pain. She can be reached through her website at www.katemnicholson.com. 

You can watch Kate's TED Talk below: