How a Pain Activist is Activated? You Can Vote For Her!

How a Pain Activist is Activated? You Can Vote For Her!

By Ed Coghlan

On a chilly November 21, 2012, Dr. Terri Lewis was standing in the Vanderbilt Spine Imaging Center watching television, waiting for her son Ian to complete a series of body scans necessary to plan and execute a third spinal fusion.  On the television monitor overhead the newscaster conducted the daily news roundup.  On that particular day, the news roundup included a story about the recall of corticosteroids compounded by a firm in Framingham Massachusetts and distributed as epidural steroid injections.  At the same time the news was breaking, her son joined her and together they listened to the newscaster who concluded his remarks with something on the order of, “while this is not expected to be a large problem, Tennesseans may be affected and should check with their pain management physicians to determine whether they may have been exposed.’  As the newscast concluded, Terri and Ian looked at each other and at the same time said, “oh hell no!”

On the drive home, she called Nashville News Channel 4 and spoke to the newsroom crew, one of whom she knew.  She advised the news crew that this was a potentially deadly event of some magnitude and that whatever they did, they were not to dismiss it since potentially hundreds of persons could be affected.  Upon arrival, she emailed the newsroom with copies of scientific articles necessary to understand the story they had just broken to the public.

Tennessee was ground zero, followed closely by Michigan, Indiana, and Virginia. Over the days and weeks that followed, the news filtered from newsrooms across the nation that across 21 states, 17,000 doses of potentially contaminated corticosteroids and other compounded medications were injected into spines, muscles and joints and distributed to 13,500 +/- persons aged 16 – 102 years of age.  Injection locations included hospitals, clinics, and physician practices.  CDC issued guidance to states to recall both product and locate potentially injured persons.  Pain clinics in the 21 states were advised to check their stock and distributions to patients and to notify them of potential exposure and consequences.  Unfolding injuries included meningitis, paraspinal infections, epidural abscesses, joint infections, and strokes – alone and in combination.  The ‘cure’ was a crapshoot that involved deadly medications, surgeries, and a lot of watching and waiting.  Like all medical catastrophes, the follow through by state public health agencies was uneven and inconsistent – not only was there no medical precedent, there was no legal or enforcement precedent to force cooperation.

In the days following, the Tennessean Newspaper lifted a Facebook group onto its web tools to track the story of the largest compounding disaster in US medical history.  Family members and injured people began to amass in cyberspace as the Facebook link was distributed through media resources.  As a clinical practitioner, Terri stepped into the void and enlisted the help of her colleagues, some of whom are themselves chronic pain advocates and persons recovering from injection injuries, to mount a follow along effort through social media, scouring media reports and collaborating together to track and trace, find and follow, potentially impacted victims for the purpose of providing support, information, education and resources to families navigating uncharted waters.  For four years, this voluntary effort has provided the most comprehensive natural history of a medical catastrophe outside of the federal public health system.  The public’s memories are as short as the news cycles that keeps them informed. Over time, the noise in the news quieted, even as illnesses continued to ramp up and the magnitude of the catastrophe visited upon families became clear. Beyond the stages of grief and loss have emerged educated powerful advocates who schooled within this environment.

Dr. Lewis has extensive experience in the development and administration of community programs and systems of care for persons with disabilities and chronic health impairments.  Her work life represents broad community rehabilitation industry experience, having served in the roles of educator; the Director of an overseas embassy based mental health program in the People’s Republic of China; Executive Director of a large rehabilitation organization, and collaborator with local, state, and federal agencies to create community mental health and rehabilitation services for unserved and underserved persons with a wide variety of needs.  Her experience has been supplemented by working as an advocate with consumers who have direct personal experience with injuries accrued as the result of medical harms, and retired medical practitioners who were very knowledgeable about the environment in which this event had occurred. Together, they sought out the science, brokered information between patients and government agencies, and rounded up resources to identify, diagnose and move patients into treatment who were abandoned by the physicians who injured them.

They say that in an emergency, look for the helpers.  “I really stand on the shoulders of consumers who have been harmed and the helpers – the giants who stepped forward to catch families and fold their arms around them in hours of great need,” reflects Terri.  Without the opportunity to educate myself through their experiences, it is unlikely that anyone would have been prepared to respond to the visceral trauma imposed on hundreds of individuals and their families.  Nobody recognizes the needs of the injured like those who have gone through a similar experience and survived. Nothing prepares one for the unexpected and needless deaths of our loved ones. To know that these deaths were preventable and avoidable increases the trauma and delays recovery.

More than 800 persons were sickened and detected, and 77 deaths occurred in the months that CDC tracked the outbreak.  More deaths have occurred as affected individuals linger between illness and death.  Importantly, roughly 12,000 persons remain potential victims of this outbreak, sickened without understanding or the help they need.  The information gained from families through this support network served as a reliable resource for addressing impact issues raised during the public hearings that followed.  Terri and her volunteer team have contributed literally thousands of hours of patient education to families, legal teams, physicians, and the Congressional and Senate Committee staff.  She served on the Patient Safety work group that contributed to the Drug Quality and Safety Act.  Because federal charges were filed against the manufacturers of the contaminated materials, trials will be conducted in 2017. Together with information provided by the Department of Justice, the documentation that Terri and her colleagues gathered throughout the many months of this event allowed Congressman Mike Bishop’s (MI) office to successfully advocate for the award of USDOJ Crime Victims funding for injured individuals and families.

The cases have moved to Boston bankruptcy and criminal courtrooms. A lot of work remains to fully understand the longer term magnitude of this event. She and her colleagues continue to closely examine the factors that led to the outbreak, the public health response failures, and monitor the implications for patient safety.  Stepping into the healthcare void and asking for help from those who could address gaps in the public health response saved lives.  Dr. Lewis doesn’t know who nominated her in the category of Patient Safety Activist for a 2016 WEGO Health Activities award.

(Vote here)

But she wants to use this nomination to call attention to the role of medical harm in creating unrecoverable injuries from which chronic and intractable pain develops.  The individuals affected by this event, like the majority of those who seek pain management and relief, were working hard to stay functional.  They were not diverting medications, addicted to illicit drugs, or misusing multiple forms of compounds.  They were like the majority of us, working to conform to healthcare they thought would help them continue to stay as active as possible. And that is why it is so important to keep this event in the public eye.

If you or someone you know may be a victim of the fungal meningitis outbreak, please join at this link:  https://www.facebook.com/groups/meningitisoutbreak/?ref=bookmarks

The complex legal history of this event has been closely documented by Walter Roche and can be viewed on his blog at: http://meningitis-etc.blogspot.com/2016/09/extension-sought-in-st-thomas.html

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

There are 5 comments for this article
  1. Terri Lewis at 9:02 am

    Thank you. There are so many folks from all walks of life who have taken up the commitment to ensuring that all of us have access to safe, affordable health care. I stand on the shoulders of giants.
    Truly. I am blessed.
    And thanks Ed for acknowledging the important role of advocacy.

  2. Loralie at 10:27 am

    Dr. Lewis, I can’t thank you enough for being one of only a few honorable physician’s to speak up about SEI! I believe the number of people injured, permanently damaged and even those who die from these injections is vastly unknown! I personally find it unconscionable and absurd, no regulations exist requiring or mandating Dr.s to report adverse event’s!

    Furthermore, Spinal Epidural Injections are not FDA approved for use anywhere within the spine. Yet, míllions of them are used “Off Label” by the medical community every year for Chronic Back, Neck pain and child birth. Despite the increasing warnings from the FDA over the past decade! I was very excited when I saw the FDA “black box” these injections and were putting together a task force stated for the summer of 2015.

    Unfortunately, the medical community at large met the increased box label warning and planned task force with; great resistance, loud opinions and special interest to back them up! Therefore, nothing really changed and instead we see the number of SEI being used for Chronic pain now skyrocketing. We have the CDC’s new opioid prescription “guidelines” (aka law!) to thank for this! The CDC has taking away pain management not only for long term CPP. They also now dictate what type, dose, and amount of pain medication Dr.s may give to people after injuries, painful infections and even surgery!

    On the other side we have the DEA going after Dr’s who don’t comply with the CDC’s “Guidelines”! There have already been multiple Dr.s around the country who’s practices and personal assets have been seized by the DEA and this is before the Dr’s were even changed! Leaving these physician’s without a dime to hire an attorney. Are there “pill mill” Dr.s out there? Of course, but the number is very small and they can’t possibly be writing legitimate scripts. The “National Controlled Substance’s Database” has been in place for many years. It prevents a person from filling mutable prescriptions for narcotics in a short period of time regardless of what drug store they try.

    This statistically tainted “War on Drugs” initiative has been going on for close to a decade. The Gov “claims” which say, “Prescription Opioid pain medications and Marijuana are the gateway drugs for Heroine use” This bologna includes legitimate CPP and is absolutely ridiculously false! With that said, Congress just sealed the fate for millions of CCP this summer when signing their Bill. This bill was intended to crack down on illegally street sold opioid drugs, reduce the Heroine epidemic and create rehabilitation center’s for people with addiction. Sadly, it actually hurt the people who actually prescription medications the most!

    Yet, for some reason “They” can’t see the difference between “Dependence and Addiction”! CPP “Depend” upon their medication’s inorder to get out of bed and do the best they can to have some quality of life. Most CPP don’t even like having to take medications. Yet, though no fault of their own, “It’s the only thing helping them stay alive!” Whereas, “Addiction” is primarily caused by the intentional miss-use of medications to get high. Eventually, people become physically and emotionally addicted to whatever drugs they can find. Sadly, Heroine appears to be the cheapest and easiest drug to buy and is extremely dangerous.

    The unfortunately reality of this legislation effecting approximately 130 million Chronic Pain Patients in the US alone. Will prohibit any Dr. from being able to prescribe pain medication’s for more than a few days. As far as any CCP, we must all now go to PM Clinics. Where we are treated as if we are drug addicts. If a person’s pain is related to the neck or back many PMC will only offer Antidepressants, Behavior Modification, PT and… Spine Epidural Injections! Yes, I’m serious. Even though they are not FDA approved for use in the Spine and there is no medical literature proving their efficacy! Although, they do have one redeeming quality for those who give them. According to 2012 statistics SEI were estimated to be a $360 Billion dollar a year industry between Big Pharma and the Medical Establishment. Oh, plus the FDA and CDC don’t care about the risks so these Dr’s don’t have to worry about losing their license.

    The horrific consequences of this legislation that’s been predicted by the majority of CPP, PC/Family Dr.s and even Psychiatrist is the following: The rate of illegal street drug purchase’s will go up and it will due to desperate chronic pain patients trying to stay alive! The use of Heroine will also increase out of despair! Alcoholism and alcohol related disease and death will increase by at least 200% or greater. This is simply because CPP are typically not willing or physical able to find drugs on the streets and /or brake the law. Finally, the rate of suicide will increase to numbers that no one would even believe! It’s already happening just look at the statistics which are probably much higher than reported.

    I personally am numb at this point from seeing the post’s in my support groups informing everyone, “I am deeply saddened to inform everyone our beloved warrior ____ fought as long and hard as they could. Unfortunately, ____no longer had the strength to go on and saw no other option but to end his/her suffering and leave us.”

    I’m sorry to end with such a negative statement. However, unfortunately, the truth is often not pretty. Yet, I believe if people are willing to stand up for the rights of every single human being in this country; by banding together with Patients, Dr’s, Advocates, Lawyers etc. Perhaps, just maybe we can get things changed before we loose anyone else…

    All My Love ♥…
    ~ Loralie

  3. I. Hollis at 12:10 pm

    Thank you for your tireless work, on behalf of the Chronic Pain community, and bringing to light the medical harms from tainted ESI’s, and other pertinent safety and societal issues that affect patients and communities. Thank you for not letting those that were harmed by tainted ESI’s be forgotten!

  4. Joan at 6:46 pm

    I just want to thank you Terri Lewis, I live here in TN and remember this happening I was receiving injections at the time and the dr I was seeing at that time stopped them. Shortly after I was let go from his pain clinic. I did not get sick, but my heart goes out to those who where effected by them, especially the ones who lost loved ones. You are doing wonderful work for us that suffer chronic pain, thanks again!

  5. Krissy at 3:42 pm

    Wow, Terri, this is amazing. You have my vote right now. I will also learn more when I can. I would like to write to you soon about something else. I am very ill right now and have been getting worse for some time, but no traditional medical doctor can help me. I don’t know what my future is.

    As I breathe with tiny breaths and try to hang to another day, I saw the headline of this article and figured it may be about someone I knew.

    I’ll vote now and read the links and get more info when I can. I’m just so sick I don’t know when that will be. I had some hope yesterday and saw a functional med doc who wouldn’t even talk to me unless I wrote him a check for $7000 first. I had to leave of course.

    Thank God for all your great work!