By Cynthia Toussaint, PNN Columnist

While watching Dopesick, the Hulu series that dramatizes Purdue Pharma’s driving of the opioid crisis through their cash-cow OxyContin, I was traumatized to the point of hitting the pause button at least half a dozen times.

The filmmakers were so spot-on with their story telling, I anticipated and said names and organizations out loud before the actors did. You see, I was in the middle of this evil. And I was asked to be a part of the killings for money.

Watching Dopesick reminded me of those god-awful times. Recounting the untold number of people who got addicted to OxyContin and overdosed made me sick. Knowing Purdue and its accomplices nearly got away with it made me sick. How close I was to it all turned my stomach.

In 2003, about a year after I founded For Grace, I was deep in the planning of a California Senate hearing that would shed light on gender care bias toward women with high-impact pain. I loved every crazy-busy moment of this endeavor to give voice to women dismissed by the words, “It’s all in your head.” I was ecstatic to have three female state senators co-sponsoring my hearing that, to this day, remains the most requested event video in Capitol history.     

Out of the blue, Purdue Pharma’s Director of Community Outreach phoned. I’d never heard of Purdue before, but upon overhearing the call, my partner John handed me a note, telling me they were a pharmaceutical company that funded nonprofit pain organizations.

I was flattered that Brenda (not her real name) loved the work I was doing with the hearing, but more than a bit miffed when she recommended her own advocacy people be able to testify. As a start-up nonprofit, For Grace sure as hell needed underwriting, so I agreed to call and get to know her folk. What could it hurt?

I was pleasantly surprised when they were friendly and knowledgeable and, in the end, I chose to go with half my people and half Brenda’s that I and the senators’ staff vetted.

Things went sideways the morning of the hearing when Purdue and those who would testify met with us at the Capitol. After brief intros, Brenda asked for my written testimony and quickly edited it in red pen. I was infuriated by this unwelcomed intrusion.

Still fuming, I arrived late to my own senate hearing as I’d been yelling at John that they had no right to change my testimony just because they’d paid to fly some people in. Who the hell do these creeps think they are?                  

After the successful, standing room only hearing, I was beyond stoked and let the bad energy of the morning pass over dinner with legislators and staffers I adored.

Also in attendance were Purdue and their speakers. That night, at Purdue’s suggestion, we began laying the groundwork for a “Women In Pain” coalition. I was in heaven with the prospects of giving my movement a bigger platform.   

Women In Pain (WIP for short) was For Grace’s exciting new project and the cause I wanted most to lead. Springing from a 2001 medical study entitled “The Girl Who Cried Pain” and a follow-up article in The New York Times on the neglect women face in getting their pain treated, I couldn’t wait for the world to learn about WIP. To have a coalition of nonprofit pain leaders and a deep funder behind our movement was a dream.

A dream that would slowly erode into the ugliest kind of nightmare.

When the coalition and Purdue began meeting, the first order of business was to establish an understanding that everyone would be working under For Grace’s umbrella, as we initiated the WIP concept and felt a deep ownership. In fact, we were strongly considering expanding our mission from CRPS awareness to the plight of all women in pain.

Though I’m known for my work ethic, I soon felt overwhelmed by my load. To keep up with For Grace’s everyday activities and the coalition’s needs, John and I were grinding through long hours, seven days a week.

Almost out of the gates, we were getting pushback from coalition members about seemingly everything. Jealousies erupted as I was getting the lion’s share of media attention due to my hustle and drive. Per their demands, I generated media coverage for all members, but that wasn’t enough. Some of them wanted me to script out their answers for interviews. I was beginning to feel beaten.  

‘The Correct Response’

One day I received a call from Purdue inviting me to give the keynote address for pain advocacy conferences they were underwriting in Denver and Philadelphia. The purpose of these events – or so I was told – was to train and inspire pain leaders to effectively interface with media and policy makers.

The person who’d be overlooking this affair was Dr. Richard Sackler, the grand dragon of the family-owned Purdue empire. At the event, Purdue minions were twisted like pretzels in their desire to please this unimpressive man, who struck me as distant and cold.

I was insulted when Purdue insisted that I take a media training class. In a taped, mock interview with their crisis management consultant, I was asked, “What treatment do you advise when a person gets a CRPS diagnosis?”

“Well, there’s a whole range of options out there, including alternative ones,” I answered, spreading my hands a yard wide. “Remember, what works for one person may not work for the next.”

Purdue’s consultant chided me. “As the up-and-coming pain star, you should rethink your answer. The correct response is to take OxyContin,” she said.

Stunned, I responded, “But that would kill people. There’s nothing to rethink.” I felt trapped in a queasy Twilight Zone episode, as not a soul in the crowded room of pain advocacy leaders and healthcare professionals backed me up.

That night, ensconced in our five-star hotel room, it dawned on John and me that everyone in this scheme was training to be a de facto sales force for OxyContin. We were the only schmucks not in on it, though Purdue was actively grooming me to be their #1 patient sales person.           

This bizarre, shady gathering left me with a rancid taste and my enthusiasm curbed for the coalition. But I forged on, at the behest of my advisors, to give Purdue a fair chance to find common ground, a notion I now laugh at.

Next, Purdue offered me an extraordinary opportunity to make WIP fly in an influential, national arena. I was invited to bring our project to “Women In Government”, a powerful organization comprised of female state legislators throughout the country. Thrilled, I introduced my cause at their western regional meeting in Honolulu, then prepared to close the deal at their annual conference in Tucson.

I must admit, I was enjoying Purdue’s lavish courtship – travel, the chauffeur-driven town cars, the choicest suites and the finest meals. After all, I’d earned these perks, I told myself. I was working damn hard and was extremely effective with my message. I knew I was good at what I was doing and it was gratifying to be recognized.

But Purdue continued their insidious attempts to control me. Before my speech, Brenda chided that I’d better knock it out of the park as they were spending a small mint. Further, I was not to go one nanosecond over my 20 minute speaking limit, or else! Hmmm, not the good luck pat on the back I’d hoped for.

Fuming, I made a beeline for the event coordinator, telling her of Brenda’s abuse. Her face turned beet red, angrily telling me that Purdue didn’t run their show. This kind woman reassured me to take a deep breath, then go out and do my thing. So I did.

During my standing ovation, the director came over and hugged me with eyes welling. Joy confided with the room her ongoing bout with chronic pain, along with her ringing endorsement of the WIP movement. Then I was circled by legislators, shaking my hand and thanking me. Most important, they said they’d do whatever I asked.

Later that day, Brenda showed me first-hand what my advocacy future would look like if I played nice with Purdue. During a special session, I watched a Broadway-level singer/actor/cancer survivor entertain the audience, giving them an update about her cause to promote a cervical vaccine. She was living my advocacy dream job – traveling the world, performing, making great money, all the while helping people. That afternoon, she captivated the room.

I had stars in my eyes. For the first time since losing my performance career at 21 due to CRPS, I was being offered a job that would completely feed me. And it was a more noble pursuit than entertaining, as I’d be helping, even saving, many people. But could I get Purdue to come around? They wouldn’t want my services solely to peddle OxyContin, right?

There’s much bigger fish to fry with our shared mission (or so I thought) to put chronic pain and gender care bias on the map. This was my great passion, and I was determined more than ever to thread that needle.

Purdue Wants More

But my naïve hope didn’t float for long. When we restarted our coalition meetings, the women were stone cold toward me, and I felt punished. Their jealousies were amping, and managing all the egos and expectations added to my overload.  I began feeling itchy that the coalition was grinding me to dust in an attempt to heist the project, leaving For Grace behind. The walls were closing in.

I called Brenda and voiced my concern. Oddly, she was warm and reassuring, voicing that, per our agreement, the project would never be taken away from For Grace. To the contrary, she said we were approaching a tipping point where the WIP movement would explode.

I was calm, for about a minute.

On the next call, the gates of hell broke open. The women were backing unethical suggestions from Purdue, including supplying a prominent link from our WIP website to Purdue’s OxyContin marketing page.

John went nuts, sternly stating that was a “slippery slope.” He exploded, “If we give them that link for their money, they’ll want more. And more!"

The women yelled him down, saying For Grace didn’t know how business worked. The back and forth warring finally ended when I pronounced, knowing full well Purdue was on the call, “I won’t be a whore for a pharmaceutical company.” The sounds of phones hanging up followed.

Soon after, I saw in a coalition member’s nonprofit newsletter that she and the others were launching a new organization. It was called “Women With Pain” and parroted our mission. Around that same time, I was abruptly dropped from planned media stories and speaking engagements. Clearly, Purdue’s tentacles ran far and wide. When I threatened to speak to the media about their dirty deeds, Purdue called with a bevy of their attorneys in tow, telling us thuggishly to put a cork in it.

I cried, I yelled, I screamed, I even begged God for mercy. What I’d given birth to had been heisted, and was going to be used to kill people. John and I got deeply ill with what I thought was an epic flu, but looking back, I see it was despair. I became despondent and we were convinced there was no path forward with the good work. Worse, I started thinking deeply about ending my life. I didn’t want to live in a world this soulless.

Saving My Soul

But the fire within hadn’t burned out, and after ample time to grieve, I was able to get out of bed. I was further lifted by For Grace board members who prodded me to not let the bad guys win. Ultimately, I saw that good things could be possible again.

While formally expanding our mission to Women In Pain, I used my persuasiveness to get the pro-bono services of a top-end intellectual property attorney. He sent every coalition member a cease-and-desist letter, advising them not to use the name and idea inspired by For Grace.

I was elated that the letter hit its mark. In fact, the rival organization’s name and announcement were taken down the very next day. Shortly after, I was informed the new coalition was dead on arrival and I knew I’d gotten Purdue, a multi-billion dollar corporation, to buckle.

That’s how I saved my soul from the Sackler family and their savage empire. And I’ve never looked back. Until now.

Those terrible years of trauma surged back while watching the evil dramatized in Dopesick. I was reminded that everything Purdue touched turned to rot. Worse, with few exceptions, everyone enabled them. Without hesitation, they all lapped up Purdue’s dirty money. To make this level of killing possible, Purdue bought support from a wide range of villains: the FDA, policy makers, healthcare professionals and, yes, pain patient advocates. You know who you are.

For years, I’ve watched bad people with bad organizations take bad money to do bad things. And the opioid crisis that Purdue spearheaded has made collateral damage of all of us with pain. Many who need opioids to functionally survive no longer have access.  Many good doctors who responsibly prescribed have been indicted. And for ethical pain organizations who still want to do good work, funding has dried up. I think it’s fair to emphatically state that everyone with pain is suffering in the wake of Purdue’s and their enablers’ sins.               

With apologies, I don’t have my usual up-beat take-away, no words of comfort. Just tears, and a plea. Watch Dopesick, study it, commit this atrocity to memory. Take my word, the pharmaceutical industry is doing just that, and there’s another Purdue in the making that will attempt to make billions off the suffering and murdering of millions. All in the name of pain care. 

I was this close to being one of Purdue’s statistics. But I lived to tell my story. Perhaps it’s not foolish to hope next time more souls will be saved.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”