Opinion: Fed Up with Pain? Advocate!

Opinion: Fed Up with Pain? Advocate!

By Brooke Lee Keefer

Screaming into a vacuum about my pain and inadequate treatment wasn’t getting me or any other patient anywhere so I met with my Congressman’s district director, “Bob” this week.  It was a great meeting, one each and every pain patient should be scheduling in your home districts.  Since I am a US Pain Foundation pain ambassador, I spoke with them first to get tips on what to say to Bob.  The worst thing I could do was walk in there screaming and yelling about our broken pain management system.  Instead, I armed myself with knowledge, was assertive not aggressive, and felt my mission was accomplished after talking with Bob for an hour and a half.

Brooke Keefer

Brooke Lee Keefer

Before I shared my long painful health story, I asked Bob to think about the worst pain he ever felt.  He immediately said, “sciatica” with a grimacing expression.  I said, “Ok, now imagine you can’t get treatment for it and it never ever goes away.  It is 24/7 and lasts for months.”  After that, Bob clearly had no problem identifying with everything I shared about pain.  Everyone has experienced pain in their life and if they tell you they haven’t, they are lying.  The difference is they’ve most likely experienced acute pain or pain that lasted less than a week, not chronic.  That is where our personal stories are so important.

After I shared my health story, I shared about the lack of access I faced trying to get my pain managed, including the barrier to opioids and how nothing else worked for my chronic pancreatitis and how the only “cure” is to have my pancreas removed.  I explained that where we live not a single pain management doctor in a 50 mile radius prescribes opioids, though for my particular condition it is the most common and necessary treatment.  Trust me, there are loads of grumpy people in pain here in upstate New York.  I shared about how my body gave out from pain, my blood pressure doubled, and I began to have a stroke—from pain.  I told him the other side of the opioid story isn’t being told by the media—the chronic pain patient side.  I made it clear he knew I was a devoted mom, wife, daughter, sister, friend, a grandmother and human being.

Then I gave Bob a one-pager on the National Pain Strategy and reviewed it with him.  Bob was not aware there are 100 million people in pain in America.  He wasn’t aware of the National Pain Strategy either.  It is crucial if you meet with an elected official you have some knowledge about this report and advocate for policymakers to support its objectives. This report needs to be on the radar of all elected officials.  It is our blueprint for pain patient rights, research, and fair treatment.

What will become of my meeting with Bob?  He assured me he would contact the staff in D.C. and the Congressman.  Will that happen or anything come of it?  I can’t say, “definitely”.  Regardless, I exposed someone close to someone in power about the plight of chronic pain patients and need for a pain strategy.  My next stops are my federal and state senators.

Please make a commitment now to contact and meet with your representatives.  Here is how you can do it:

  1. Sign up as a US Pain Foundation pain ambassador at: https://www.uspainfoundation.org. Tell them you want to meet with your elected official(s) and would like guidance.  Alternatively, I’ll gladly help you out.  Email me at: info@sodae.org.
  2. Locate your federal elected officials. It is very easy.  Go to: https://www.opencongress.org/people/zipcodelookup and plug in your address and zip code. Call their office and tell them you would like a meeting with their district director or a top aide to discuss pain patient issues.  This website will give you the D.C. contact info but be sure to get an appointment in your home district.  Alternatively, you can use this site to locate your representatives then you could google their home district office.
  3. Be pleasant but authentic during your meeting. Do NOT go into an elected official’s office screaming and yelling that your pain medications were cut off.  Yes, that is a horrible thing but there is so much more these officials need to know.  All you have to do is tell your story from the beginning, including how and why you developed pain, how pain has affected you and your family, your experience with pain treatments and doctors, etc.  You know your story best so no need to get nervous.
  4. Be sure to hand them info on the National Pain Strategy. I brought two copies of the one-pager with me. I gave one to Bob and used my copy to read the bulletpoints.
  5. Dress nice. I wore a nice pair of jeans, short heeled mules, and a nice blouse with a flowy cardigan.  In other words, don’t wear sweatpants, which was hard for me as I live in sweatpants!
  6. Really want to spread the word? Locate your local state assemblyman and senators and meet with them too.  These are not federal level officials. They only serve your state.  If you have questions about finding them you can email me or the US Pain Foundation or try googling it.
  7. If you absolutely cannot get out of the house to advocate, write a letter or email. These methods are mostly ineffective but if we can get enough people to send letters, representatives will be forced to take note.  In-person meetings are still the best way to advocate and promote awareness.

I hope you will join me to start making a real change for pain patients! Thank you.

Brooke Editor’s Note: Brooke Lee Keefer is a mom to three sons ages 28, 19, and 4 and has a 2-year-old granddaughter. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, www.sodae.org.

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Authored by: Brooke Lee Keefer

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Ann Lewis

Yesterday, my adult daughter was sent to Norwegian Hospital thin Chicago with an acute throat infection and fever. She was forced to sit in the waiting room with large group of people, eating Subway sandwiches, declaring their pain levels were a 10 out of 10. Also discussing where they were going to score after getting a hit at the hospital. Apparently, if you tell a hospital that your pain is at that level, they see you immediately - good to know.

Not knowing this insider information, daughter sat there for 3 hours in agony, she left and went to Presence St Mary’s Hospital who only after a call from her doctor, saw her right away. For the few minutes she sat in their waiting room, she heard the same conversations going on. Imaginary pain levels (when you are in 10/10 pain, you don’t laugh and joke with the people around you) what pain killers they are expected to get etc…. When she left the waiting room to go into an examining room, she heard the words “punta” spat out by the other people waiting.

With our system working this way, is it a wonder why “real” pain sufferers are getting short shifted to the back of the line? Is it a wonder why our medical costs are as high as they are? Junkies are ruling the world of chronic pain, culture, society and we are letting them.

Yes, drug addicts need treatment but so do chronic pain sufferers and there doesn’t seem to be an acknowledgment that these are different.

Candice Hawkins

I have spent the last 4 months trying to understand why I am having problems with my pain issue and a Quote unquote, Pain Management facility and reading every article I can to determine the solution to my problem. Please understand hat I am not an “off the street” drug addict or a pseudo pain patient looking for a pharmaceutical high. But it seems my idea of care and my doctor’s are two entirely different entities. I am a chronic back pain patient with one failed surgery under my belt topped off with a spinal fracture due to an accident 3 years ago. I am an officially disabled RN who was injured at work in 1997 who then took pain medications(Norco)until stopping them 6 months after my surgery in 2000. In 2003 I was diagnosed with Chronic Myelogenous Leukemia and due to the additional back pain from being inactive started with a Back Facility who put me in pain management with one of their followup doctors and started Fentanyl Patches and rotated through break through medications about every 6 months. I never needed to take but a couple of pulls a day and not everyday. I had been put on Oxycodone, Hydromorphone, Dilaudid and then several muscle relaxers that if taken could only be done at night since the side effects were bad. As we all know by the fall of 2014 the red tape shoved at doctors concerning pain management by the federal government became excessive. The doctor at the Back Facility and his colleagues decided that they would not be part of the increased control and unfortunately bailed out on pain patients. Texas turned into corporations of pain management facilities run by anesthesiologists who had minimal training in patient care, needs or psychological problems of depression in chronic pain patients. I started with a new pain clinic and an anesiologist by January 2015 and after being disillusioned by one unqualified anesthesiologist who had become nasty over my having my old facility insert my Spinal Cord Stimulator. I ended up with the doctor I had up until Febr. 4th before he threw me out for what his hand written letter said, “noncompliance of opioid policy.” I am telling this to those of you who with good reason might think I’m lying but others who may not but after taking 1 it 2 10 mg Methadone off and on for 6 months prior to being under the care of the final anesthesiologist who deemed himself triumphant in the knowledge that I was lying. Upon his request I did not take any, and I do mean any, Methadone after signing his contract. I was told my urine drug test had a level of 3000mg/ml of urine. I asked for clarification since I had calculated that with given 90 CT 10 mg Methadone over 90 days I could state I may have taken 4- 5 a week. The doctors nurse assistant saying I had the metabolites of Methadone at 3000mg/ml of urine… Read more »

Richard Oberg M.D.

This post has generated excellent thoughtful comments by all. I certainly don’t want to dampen anyone’s enthusiasm but when politicized issues like this emerge you must understand exactly how the system works and what you’re up against. This is no small feat as motivating physicians toward some common cause is like herding cats. Dave has the pulse of what’s going on with keen insight. Until our fiasco began (and I knew it was about to) I was an in-house senior staff physician held in high regard with a track record of getting along and getting things done. 30 years in practice as an insider and rotated on/off every committee in the hospital. I’ve been in healthcare for nearly 40 years now and since becoming ill have visited numerous chronic pain/psoriatic arthritis groups over the years always somewhat stunned at how naive lay people seem to understand how the healthcare process works and expecting some non-existent Lazarus to rise up and save the day ‘if only’ they got the message. Understand this: everyone in healthcare knows exactly what’s going on (especially physicians) long before public policy is implemented. They’re the ones implementing it - or not. There’s also a national shortage of primary care providers so it becomes a supply and demand thing - were we to have an excess of providers competing for patients this situation would be different. Brooke relates about no pain management doc in 50 miles but you don’t need one - basic primary care physicians can script for opiates less than 50 morphine equivalents without issues and sometimes up to 80 - but they mostly won’t in this political climate and no one can make a physician treat or script for anything that’s not an acute emergency. New statistics (if correct) say they script for the majority of them anyway and that’s called ‘bad’. And so called ‘pain management expert’ physicians - wow. Do you hear anyone say ‘pathologist expert’ or ‘rheumatology expert’, ‘surgeon expert’ etc. etc.?? It’s laughable nonsense except for patients in pain who don’t find it amusing and is shameless marketing of snake oil salesman. Some are OK but many aren’t and it’s a profitable business. Independent practices can do anything they want and trust me - no one’s watching and no number of abysmal negative online reviews will keep them out of practice. Lawyers have been dismantled due to recent medical liability restrictions in many states and won’t take our kind of cases anymore - we tried. Being in chronic pain as a good compliant patient and losing your hospital position over not being able to get your meds including fun in non-tapered withdrawal isn’t defined as ‘damage’ and that’s about half the story - the rest would outrage anyone (except our medical board apparently who has no shame). Lastly the bitter irony well articulated by Andee - I’d muster up the energy I mostly don’t have anymore and do anything to help us all - but no one’s asking even experienced… Read more »


Dr. Oberg- I laughed at your comments regarding the health commissioner. And I’m sure you know well how poorly concerns by people in pain are by professionals and politicians.
The politicians don’t want to take the time or make the effort to break their heads open to create the symbols of a new day- they would rather defer to big shots in health care to do that. And the bigshots in health care are unwilling to make the effort. Note well, how the pain specialists who created the 2011 IOM report and the NPS- where is their plan to improve their practice. As they are on top of the food chain and looking down on everyone else- they believe everyone else must conform to their vision and plans- and refuse to improve their own practices.
At the heart of the issue is a belief that experts and people in power should dictate to the rest of society what pain care should be. The politicians and industry see the views of everyone else as not having much worth and wont inconvenience themselves with fairly and fully considering the views of people in pain. Pain care is not free and it is not democratic. Pain care is dictated by the designs of powerful others. I think of studies by Stanley Milgram and Phillip Zimbardo when I think of pain care- I think of Nuremberg defense and Stockholm syndrome- but I don’t think of Mother Teresa or Albert Schweitzer when I think of pain care.
I don’t think our politicians and experts can see how grotesque pain care has become- they see through glasses that reflect their own needs and ignore the needs of others.
As Dr Biro wrote- as long as the conversation lasts people in pain are not alone. Since the conversation between the powers that be and people in pain has not begun- they remain alone- ” the abandoned folk” that Patrick Wall referred to years ago.

Mark Ibsen

You cannot find your face in the portrait?
You ARE the portrait.
Pain is an effing terrorist.
Terror spreads fear
Fear breaks down community.
Community beats terror.
(A cycle: like rock, paper, scissors..)


While I assume this article well-intentioned, it ends with a rather offensive salvo against those whose chronic pain is so debilitating they cannot leave their homes. On what basis are their advocacy efforts via email deemed “mostly ineffective”?! Taking the time to develop a relationship through correspondence sometimes yields significant results. It might also pave the way for your meeting. Writing has its benefits. It’s not easy to be patient over time, to maintain courtesy, to consider multiple sides of an issue — but it goes a very long way to developing an effective dialogue. Being prepared with reason and research when corresponding requires a lot more than handing over some organization’s synopsis of the NPS. Which, by the way, is very likely NOT the Camelot future of pain care (as Dave noted). Try advocating an alternate view of the NPS to the “pain advocacy organization” promoting it. A way, way harder sell. They won’t even include your questions in their “twitter chat” transcript. My angst is less directed at this article and much more at the continuous drone of advocacy demands. I do not doubt the authoress has felt pain at heart wrenching levels. I’m really glad she feels well enough to do what she does now. But being told that what matters most is something chronic pain makes impossible for me to accomplish -and so many other hurting people too - depersonalizes us even more. The true picture of chronic pain — as a life-altering, financially devastating, excruciating and harmful health crisis — is being replaced with smiling images of zealous semi-professional pain advocates whose energy and achievements call into question whether chronic pain is even a disability. I’ll probably be slammed for pointing that out, but it’s a valid observation. The “face of pain” put forth in a rather organized fashion by pain advocacy groups seems limited to very active people in smiling photo-ops with Congressmen, or chatting cheerily on wellness radio about marathon training, or dancing the night away at the pain organization gala. I just can’t fathom that kind of chronic pain lifestyle, but hey I get very confused by the drug commercials that show delightful waterside family vacations and a country couple’s two-step - all while a cheery announcer relays potentially fatal side effects… There’s a disconnect. Now think of the millions of people really hurting from chronic pain, their heads in their hands, sobbing, and wondering what the hell happened and why they’re not eligible for benefits and how they’re going to manage without burdening to destruction the family they love. Sure we look up and smile once in awhile. We try hard not to be frumpy grumpy lazy whiners or any other unkind term. I used to hear it from cruel clueless relatives; now the taunts come from zealous pain-overcomers. The point is that pain advocacy reminders ought to be more compassionate toward those who hurt so much that it takes all they’ve got not to end it all. I hope others… Read more »


This is a HUMAN RIGHTS ATROCITY HAPPENING RIGHT HERE RIGHT NOW! Dave is right! The National Pain Strategy is a bunch of pretty fluffed up words! It’s been overhauled and rewritten as if we haven’t studied this enough this last decade! He’s right to tell us to read it! It insults me! We had a 14 year war! We have a significantly older population, a greater degree of survival of injuries and illnesses that allow us to survive but also live with and die from a degree of suffering every second of every minute of every hour for the rest of our lives! I’ve been living this for over 20 years! It will be with me until the day I die! I am misjudged and vilified for my suffering! The National Pain Strategy is nothing but a pipe dream and is impossible to implement before a significant amount of pain patients who are barely hanging on kill themselves. It was written in 2010 and rewritten 2015 and pain specialists except a few even knows what it says and the ones who were on track in the early 2000’s lost their freedom to treat their pain patients the way they were supposed to and are now controlled by law enforcement! The DEA came in and threatened them with enormous fines and taking away their license if they weren’t very careful AFTER they went into legitimate pain practices to make examples and persecuted innocent responsible pain doctors who had to get a team of expensive attorneys JUST to keep their good name! They fined or threatened pharmacies with extremely steep fines! Walgreens was slapped with an 80,000,000, yes that’s a million, dollar fine! This is TYRANNY BY OUR GOVERNMENT RAN BY POLITICIANS WHO DECIDE HOW THEY WANT TO BE PORTRAYED. THERE IS NO OTHER MOTIVATION BEHIND CRUNCHING THE NUMBERS THAT INCLUDE THE SICK AND SUFFERING VALID PAIN PATIENT WITH HEROIN ADDICTS! THEY CALL US OPIOID DEPENDENT DISORDER NOW! It’s nothing but a need for them to look like they’re saving us from addiction rate that’s in reality less than 4%. They did a bunch of photo ops with a poor grieving mother and found someone who consciously decided to continue to take opioids after dental pain regardless of being warned to stop once the pain was gone. THEY THINK WE ARE STUPID AND WANT US TO GO AWAY! Yet we are supposed to schedule an appointment, talk politely and point at this stupid pile of papers that aren’t even a possible reality in our 10 minute appointments and therapies we will not ever have access to. It IGNORES PILES OF STUDIES AND SPITS IN OUR FACE!

Richard Oberg M.D.

I certainly empathize with Brooke and her issues (we’re a similar family) but unfortunately Dave is closer to the truth than most want to believe. We had a catastrophic collapse in getting our modest opioid meds mid-2014 and the very few providers who would treat chronic pain patients (bought and owned by our hospital system) were told to stop. We contacted local representatives, spoke with hospital administration about how ill-conceived what they were doing was, emailed the governor (Tennessee) who actually wrote back to say he was referring our detailed letter of events to the state medical commissioner - and I knew it was finished at that point. The hospital system did nothing, we never heard back from any government representative, and finally got a totally lame and inappropriate response from the health commissioner who ‘didn’t approve of what happened’ and how ‘they’ were working on fixing access (ie: doing nothing) about inappropriate conduct that had already occurred, etc. etc. It’s all about the addicts don’t you know?? It’s the same with the CDC - you won’t see a single thing like Brooke’s issues, our issues, or countless others but you will hear about how these meds create death and destruction and if only they stop them addiction will magically disappear in the U.S. The worst part about our situation was that no matter how bad/inappropriate all our treating physicians thought about the situation, no one was going to help us challenge any of it for fear of repercussions. This IS the problem and successfully treated patients can’t fix it. Treating physicians favorable to our plight will NOT get in the middle of a political football and feel they have enough on their plate without challenging loudmouth hired ‘experts’ who exist for the sole purpose of eliminating prescription opioids thereby ending addiction. Many are hired and paid to do this very thing. It makes good political headlines since all anyone hears about is addiction and, unfortunately, many are touched by that and think this is a simple fix. Those of us who need them know it’s nonsense but these same people seem to be under the delusion this country didn’t have problems with illegal drugs/addiction before opioids became acceptable. To many they were never acceptable and these people are now front and center. Why else wouldn’t there be two sides to this yet never are? Except for the kind folks at National Pain Report and few others, no one’s well intended to our plight and nothing short of 500,000 people marching on Washington (with many of them physicians) is going to fix it. When Obama came out parroting the same party line of ‘addiction, addiction, addiction’ I knew we were a long way off from stopping this madness. It’s going to get much worse before it ever gets better and when the CDC (and others) are publishing pure propaganda we should all be concerned. These meds are the most highly regulated in history and are the only abused drugs that… Read more »

Kristine (Krissy)

Brooke, I’m just speechless! You have done such an important and wonderful job amidst all your pain issues and running a beautiful family. We all appreciate your work. Thank you for this article and I know it will impact many, many people. I will share it around also so that we can get as much exposure to this as possible. I’m sure it will urge others to do what you have done.



Ms Keefer the NPS is not a blueprint for the rights of people in pain. The NPS is an occupational strategy of pain specialists, Nowhere - not even in the health disparities section- does it call for changing any law for improving the rights of anyone in pain. And if you reas the NPS- as i did- clearly the focus is on “experts” making deciions about pain care. And that is no surprise for the 80 who created the NPS were almost all considered to be experts- where was the fair representation of people in pain. Did Americans get to vote on aspects of the NPS via a referendum- of course not. Individuals in pain weere not welcome gto participate in the NPS. It is almost a year since i made comments o the NPS- and i have not received any response to my comments- so much for the NPS being concerned about the rights of people in pain.
The NPS wasnt made by civil rights representatives, it wasnt made by experts in ethics, it wasnt made by people in pain. It is important for advocates to see things as they are- and frankly-as even the IASP criticized the NPS-despite the fact they had more then one member in key positions in creting the NPS- the NPS is amateurish and lacks a real vision to improve pain care- and like Lincoln said- He can criticize who has a hear to care.
Experts are friends to other experts- they dont see people in pain as their equal or needing any right other then the ones they are willing to recognize.

Jean Price

Your comments and efforts are appreciated by everyone who lives with pain. Finding a physician who can and will partner with you is so important, especially with chronic pain. And not only are they scarce, but the regulations impact their ability to care for patients who use opioids as ONE treatment option combined with many other therapies. These regulations have centered on the abuse of these medicines, not their appropriate use for patients with chronic pain.

Something you said made me think of how we are perceived by our doctors and those we might visit to advocate for chronic pain patients. Like you, I live in sweat pants or flannel pajama pants. But I go to the painful effort of showering and doing my hair and dressing in slacks before I go to the doctor. No makeup anymore, that’s too much standing up….but still I try to look my best, regardless of the pain that is a constant, and increases with activity. And I get out so infrequently, I’m trying to enjoy being human for a while! So the doctor or the congress person won’t see my true predicament….and the toll pain can take on our everyday personal care abilities. The uncombed hair, the stack of only pajamas by the washing machine, the counter overflowing with glucose monitors and medication strips and Sportscreme and knee braces and hot packs…and an inspirational book or two. They won’t see an unkempt person with a frown of pain and an unshowered body who groaned getting out of the the car…or cab because driving is not possible anymore. Somehow we must convey this also, because unless you live it you really can’t imagine it. And unless they know the impact on our lives is a health concern, how will they open their eyes enough to recognize the need for using opioids for chronic pain? How will our needs not be overshadowed as they are now by people who abuse these medicines and use them recreationally? Pain has a long history of being a life limiting condition. It’s important that those with the power to help us realize that opioids can help us expand those limits a little and have a more productive, joyful, comfortable life. Isn’t that all any of us wants?! Thanks for the opportunity to share my thoughts!

Michelle Ziemba

Great job Brooke! I know how physically demanding it must have been to attend that meeting! But it sure must have felt great when you were done. You are an inspiration!

Brenda Waddell

Thank you for standing up for us I am so tired if being treated like a drug addict I have 4 buldging disc in my lower back and neck also have pancreatic flair ups along with I.b.s. on my lower back the herniated disc is pressing on my sciatic nerve along with bursitis osteoporosis with arthritis pain is 24/7. Last year I broke my shoulder in two places when I fell no one would give me anything but what I am taking now im afraid I will over dose from over the counter meds I sincerely pray we can all get together and talk to these people to help us because our government is the cause of all of this I wish they could spend 24hrs in our bodys so they would know. The suicide rate for chronic pain is up and I blame our government for this!

Dee Green

Well said! This is exactly what we must do to let them know that there is a side of this story not being heard! The addiction side is being heard (the media has covered only them) and they have the advantage of not being sick or suffering from chronic pain (they suffer from grief of a lost loved one but don’t understand the physical pain that the chronic pain community is being forced to deal with) We must speak up or we will be ignored and further vilified and marginalized. #PatientsNotAddicts

Yes, yes, yes! ADVOCATE! Thank you for sharing your story. You ARE making a difference! #warriors