If We Don’t Ask, We Don’t Get and If We Don’t Tell, They Will Stop Asking

If We Don’t Ask, We Don’t Get and If We Don’t Tell, They Will Stop Asking

By Terri Lewis, Ph.D.

As many of you know, there’s suddenly a lot of interest in the opinions of chronic pain patients. Dr. Terri Lewis has been an advocate for the chronic pain patient—her own father and son fall into that category—and she writes tonight on the importance of the chronic pain community contributing to a number of surveys that are underway.

There are multiple data collection activities underway that are related to the July 9 meeting in Silver Spring Maryland at FDA headquarters.

The first Is their link that allows you to directly submit comments to FDA.  I encourage you to submit comments to this link which is located here:

https://www.regulations.gov/document?D=FDA-2018-N-1621-0001

The second is a link to a survey tool that allows you to submit comments that will be aggregated and compared across the states in relationship to a body of experiences related to the provision of pain care and disease management – insurance, pharmacy, clinical interactions, diagnosis, suicide, care partner supports, and the impact of changes to your medical routines.  The goal is to assess how these changes are interacting to affect real people and develop targets for advocacy, tools, communications, and policy conversations. This link is located at the red tab to the right of your screen. Nearly 1000 persons have submitted a wide range of comments to the second link. If you haven’t already, you might want to learn how your experience compares to that of your peers across the nation.

Why is this important to you?  Consider the news this week:

On May 24, 2018, Pain Management News online published a report on a case of a woman who had a childbirth epidural injection that went way wrong.  It was later learned that she had had multiple lumbar epidural steroid injections for lumbar pain in the period prior to her pregnancy and delivery and the article author concluded there was a relationship between the two medical events and their success or lack thereof.  In our survey responses, multiple women have reported that epidural injections figure prominently in their path to disability and similar difficulties with childbirth epidural injections – in some cases, steroid injections were employed for back pain prior to the childbirth epidural – and in other cases the childbirth epidural produced a catastrophic birth result that was followed by the administration of additional epidural injections for arachnoiditis that subsequently developed.

Some of you are aware that more than 60 amendments to manage the opioid crisis are before the House of Representatives for their consideration. Among these is HR5408 which is promoted by ASIPP.org which alleges that the reason that opioids have become so troublesome is because epidural steroid injections are being withheld or reduced.  There is no evidence for this, but this bill is buried in this bundle of responses to the opioid crisis and in this case, the goal is to ensure that people with chronic pain receive and fail interventional procedures as a matter of public policy.  Importantly epidural steroid injections are not FDA approved, and further, the manufacturer of the primary steroid utilized – Depo Medrol™ – has requested that FDA stop authorizing the use of this material for epidural injections. FDA has yet to honor this request even though other countries have done so.

Among the concerns expressed by respondents to my survey are those of availability of medications when needed.  Respondents report significant problems filling prescriptions for pain medicines from CVS, Walgreens, and Walmart. As reported by Forbes on May 22, 2018, persons who utilize Medicare Part D are seeing a rapidly shrinking marketplace of pharmacy plans as consolidation sweeps the health insurance and drug benefit management industry. According to Kaiser Family Foundation in a report issued May 17, 2018, if these acquisitions go through – health insurer Cigna successfully completes its acquisition of the PBM Express Scripts and CVS Health pulls off its purchase of Aetna – nearly three in four seniors will have drug benefits controlled by just four companies. These four firms plus UnitedHealth and Humana will cover 71% of all Part D enrollees and 86 percent of stand-alone drug plan enrollees, based on 2018 enrollment.  How this will affect persons with multiple chronic conditions is unknown and will remain unknown unless you share your experience. This will be a central issue as FDA considers drug development and availability.

The Department of Health and Human Services has appointed their new advisory group to help craft pain policy.  Pain policy should not be constructed in a vacuum without the participation of those who are most affected by the decisions.  It remains important that the pain community remain vigilant and self-aware enough to understand the importance of balanced reporting of the overall patient experience in this challenging environment.  Further, we have to make sure that the most marginalized of populations affected by pain have a seat at this table and that their voices are heard – this includes persons of color, persons with developmental disabilities, the rare disease community, and persons who claim gender and ethnicity affiliations that are different than the majority population of health care users.

The inaugural meeting of the Pain Management Best Practices Inter-Agency Task Force will be held on Wednesday, May 30 – 31, 2018, in the Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. Members of the public are invited to participate in person or by webcast.  During the inaugural public meeting, the Task Force will discuss updates to best practices and issues that address gaps or inconsistencies for managing chronic and acute pain. The public is encouraged to provide oral or written public comments. For submitting written comments, please visit regulations.gov and search docket # 2018-09379.

Please take advantage of your opportunities to comment. We know this takes a huge commitment of time and energy. Disclosure is a challenge because you fear retribution.  But nobody can tell your story like you can.  From these response tools, themes will be extracted and summaries made available to you to use for your personal self-advocacy applications. If we persist, we have an increasing chance of being heard.

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Authored by: Terri A Lewis, PhD.

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Why aren’t we all fighting. The numbers of us not standing up for our rights is staggering. Unless we help each other, we will fail.
What will you do when you are cut or taken down to fit into unrealistic guidelines proposed to the chronic pain community. Or the acute patient?

I am caught up in the hysteria of opioids. I am a grandmother in the upper income bracket, not that that matters, and have taken myself down or off medications.

At the very least, reschedule medical marijuana.. as it stands now, if you are still on opioids you can’t try medical marijuana. If you have a positive urine screen, you are released from pain management.

What do they want us to do? We have done it all.

Kim

It’s so sad what happened 2 the chornically ill in pain. I still can’t believe in America the chornically ill & disabled people in pain have 2 suffer. Along with having stress from illnesses now they r stressed because their meds r being lowerd or can’t find a new MD due 2 pain MDs not practicing due to the government. Most media attention makes any 1 taking opioids look like addicts, it’s INSANE. I’m still trying 2 figure out how & who started this mess. How can the American government officials allow this 2 happen 2 the people who need their help the most?

Louis, don’t let anyone make you feel like a drug addict. We have to remember that this is all a lie…the opioid mess, as portrayed in the media, is a huge myth, very inaccurately depicted. Everyday, we must remind ourselves, we are not addicts. Only a very small number of pain patients who take opioids become addicts. Very small. …and we must remember that the CDC has lied to the public. It is now known that they skewed their statistics and had no nuance or correct detail in the way they came up with their numbers. Four of the drs. Who wrote the CDC guidelines, have signed a letter asking CDC to withdraw guidelines until better ones can be created. These four doctors have seen what has happened…now the guidelines have been misused…and they regret putting the guidelines out. 80 doctors have signed the letter. Everywhere I go, I talk to drs. Who know how wrong it all is.. and how people are suffer8ng and dying. I haven’t talked to ONE dr. Who doesn’t say that it’s all very wrong. But they are scared. Somehow we have to get law enforcement off their backs. I’m working to find out the best way to go about this.

Louis

I’ve been going to a pain specialist for over 10 years now I have severe degenerative disc disease osteoarthritis bone spurs bulging herniated disc they wanted to do surgery on me and I can’t have surgery because of Mercer in my body it would set up infection and kill me so I live off of pain meds and they slowly been taking me off of what I need to get by on, I fill like I am paying doctor to torture me each month now it seems like I feel like we have been so mistreated but people who don’t even know what’s wrong with us and how the pain that we’re going through being controlled by CDC I don’t know what’s going to happen I contemplate each and every day if this is be the day that I can’t take it no more it’s driving me crazy I can’t live with this pain forever like it has been I used to get good pain relief with continual pain medication but now that has been taken away it’s not fair that the doctors listen to what the CDC says and torturing us I feel like I have been turned into a drug addict when I have been living by the law and doing right the whole time I’ve been going to a pain management place no problems ever but now I feel like I’m a drug addict

Alan Edwards

Thank you doctor. Some practical information from one who completed the fda survey. It took me 3 hours. I did not comment fully because of the severe pain I experienced. Also, some of the questions and answers do not make sense, so do not check those. Instead try to comment. Some were blatantly rigged to skew data. You will discover that this is also a gotcha type of document. If you answer some questions truthfully and give your information at the end it will go to the local police and pharmacy. Probably not your doctors. You will be at further risk of losing medical treatment if you take the survey. One ‘answer’ asks if you will be driven to buy street drugs if you are fired from medical treatment. What street drugs? None here in the land of Andy Griffith. And don’t become emotional and answer yes. You will be put on a police database. The survey probably is bogus, not for collecting medical data or getting a feel for the agony of intractable pain, but for identifying community members and their pain medications and their prescribers. Then at any time, the pharmacy will throw you a surprise party and stop your weak dose of short acting opioid when you come with your valid script.
Again, if in pain, the survey will be difficult if you comment on all 30 or so questions. To comment fully would have taken me six hours and I am a fair keyboardist. But some of the questions are dubious and so was the required disclosure of personal information at the end. It doesn’t look as if an honest Christian crafted this survey. But on the slim chance Christians took part in it, take a bufferin and fill it out. If they were not Christians, then they must change or they will have a place in hell. Are you listening Jeff? Or Big Brother?
Truth and pain patients are the casualties of this war on innocent, suffering citizens of the United States. I pray that no more take their own lives because of this disgraceful mess.
Thank you Dr. Lewis for your help and compassion.

FormerPatriot

There are over 1400 comments on the HHS docket, but only 247 on the FDA docket.
If you have commented on just one of these two, YOU ARE NOT DONE!!. Every single comment on the HHS (https://www.regulations.gov/document?D=HHS-OS-2018-0009-0001) docket needs to be made as well on the FDA (https://www.regulations.gov/document?D=FDA-2018-N-1621-0001) docket, and vice versa.
And if you have commented on both, guess what? You are STILL NOT DONE!! That red button on the side of the page is a link to a survey tool (https://www.surveymonkey.com/r/Y8YXRJ9) that will aggregate your responses for a presentation Dr. Lewis is going to make to a meeting of the FDA.

Altogether, this may seem like a LOT of work, especially for someone in chronic pain, but since this nightmare began, we have NEVER HAD A BETTER CHANCE for someone in government to actually HEAR OUR VOICE!! If you need help, ask a family member or your caregiver.
There are over 60 anti-opioid bills in Congress right now. Chances are, not a single one even mentions patients in chronic pain.

Please do NOT let this chance to finally be heard pass you by.

IT COULD VERY WELL BE THE LAST CHANCE YOU WILL EVER GET!!!

Jill

Thank you, Dr.Lewis for your selfless work. I think we’re all starting to understand how important it is we do the work if we want to be heard.

Michele Heinze

I’ve been a pain patient for 12 years. I have never abused my medications, by taking too many nor have I ever sold any medications. I am treated like a addict off the streets, when I try to get my prescriptions filled. The script is thrown at me while the pharmacy clerks claim they don’t even stock these medications. I an a 59 year old woman, who lives in constant back pain. Because I cannot get medications that help, my quality of life is very poor. This causes many other problems, like depression. This is unfair to the real pain patients.

HOWARD HEROLD

Well, I went to Pain-Management this morning !!! and low and behold my Pain Meds were reduced again !!!!! The Government needs to leave us Chronic-Pain Patience alone, and let you Pain-Management Doctor decide what and what Dosage of Meds a person needs !!!!!!

Rita KIMBEL

We are all thankful for what your doing and by keeping us informed of the government agencies and how they control our medicine. I’ve been on board with this since the beginning, when I left the CVS Without my pain meds last January, it’s been horrible since. I’m still not getting the millegrams I need to be pain free, I’m exhausted from the stress of all the letters I’ve written, some answered, and phone calls, shares on Twitter and Facebook, monthly trips to Philadelphia, pain doctor check ins, urine tests. Its all plain and simple, exhausting. I filled out the task force questions in hopes it will get closer to my being treated like I should be.

Very sick

Thank you Dr. Lewis for all you do. You are our only chance to have a quality of life.

carl s. dunn

Do you remember how MADD got started? By parents enraged a three time arrested drunk driver still driving kills their child in a drunken driving accident. My point is this; people passionate about an injustice organize a movement like Dr. Lewis has and do something about the issue. Unfortunately, in our system of government today, unethical and immoral people use headlines to aggrandize themselves as a visionary so impassioned about overdose deaths they have hijacked a theme to enrich their political career. Reality no longer matters to these people, only getting good P.R. in the press. So what can the citizen who is so enlightened he or she knows that the chronic pain patients and others dependent on narcotics to merely function? And they are the easy victims of such usury? That person must be so concerned as to run for an office! How else can we change this unfair and corrupt system? From the inside! This takes much effort and sacrifice plus lots of money and support. Who will pay but those directly benefiting from this tack. Maybe become a lobbyist and influence our representatives to vote yea or nay on these issues. This is how it is done in the halls of Congress, and none other. It used to be our representatives in the Senate and Congress would heed the calls and letters from their constituents but money is speaking louder than words as the Supreme Court has decided money is “free speech”. And corporations are a person with “rights”. If you pay attention to what your government of around 553 people do for you in Washington, you might know these things, but these very people want an apathetic and ignorant populace, not interested voters! So, get involved, learn on C-span what these reps are doing behind your backs and either vote them out or vote in somebody who truly can represent your interests. Begin at the grass root level, run for a local office. It can be done, people, but it starts with the first step. Enlist in either party headquarters and learn the ropes by volunteering time and energy. Join a third party to see how they fail. You will have your eyes opened and you can find a way to help those who are victimized by those who only want to enrich themselves at the expense of others.

I agree with Steven. There is a very, very special place in hell for all involved in denying pain patients the right to live a normal life…let alone the ones that have now taken their lives over this ridiculous and very unnecessary opioid crisis. They are now needlessly gone, they can’t write or comment. No one wants to admit THEY GOT IT WRONG! God forbid they be embarrassed, all I know is karma is a b****!!! If it sounds like I’m mad, I’m beyond… for the more hideous; yes downright hideous stories from Pain Patients I hear the more it makes me sicker to my stomach than I already am. Nothing is being done but a whole lot of talk while good people continue to very needlessly suffer and die. Have written the president (lol), congressman, senators, you name it I’ve done it and so have others. We only continue to suffer…

Kelley

Epidural or steroid shots, are not lacking in availability, there are NUMEROUS so called “pain clinics” that do nothing but injections, I had finally been referred to a pain clinic, only to find after a 8 month waiting g list that all he does is injections and prescribes lyrica for EVERYTHING. one time he insisted on injecting into my knee, that had a “unknown” lesion on it, I kept telling him how dangerous it was to inject the lesion without knowing what it was, before my biopsy, I refused him access to my knee. And he then accused me of not following his “requirement “, and put me on “probation ” now mind you, I was receiving nothing for my pain but Lyrica, and other rediculase medications. (Befire this hysteria I was on just 3 medications, hydrocodone, lexapro and the lowest amount of Zanax one can be prescribed, (also a 90 supply would last me over 6 months) but the new laws removed all but Lexapro and I had been preaching ribbed a total of 21 medications, at the same time. All in the obsured idea that I was “safer” only to end up in the hospital for interactions from the meds that my diff “specialist ” were giving me. Ok, off track, so, I was receiving injections into my facet joints every 2 weeks for sever fever joint disease, on the 4 th trip, my mom (driving me) decided we had enough, the waiting room was a room with a few cheap chairs, people being forced to stand and sit on laps and floors, the misery in everyone’s faces was heart breaking, some crying some just staring at the wall. I get back to a tiny room, to change into a robe, I then walk into a “room” with the table and guiding machine, BUT they had somone on the table, he proceeded to finish up with this poor patient (didnt help them off table, the man fell) the nurse then gestures me to get on the table, doesnt even clean it, he layers me down and starts, THIS IS A VERY PAINFUL procedure, and baffles me that humans are being are being injected with a bunch of needles, and that since we are “pain patients” we are suppose to accept the barbaric practice that is pushed upon us. As in crying. The nurse comes in with a sticky pad, and hands it to the “Dr” , he then tracks it the railing next to, IT HAD PATIENTS NAMES WITH PRESCEDURE written on it, and the times, on a hand written sticky note. Before he is done, in comes the next “patient” and she is just standing there as I finish up, I clumsily get off the table, I see the sadness in the next “patients” eyes.

Mist

I do not understand how I am suppose to comment what exactly do they want to know. I have sent media outlets and my State Reps messages and they only Care about Addicts and the damage they cause families
The White house had a memorial to the OD victims

Nicole Burrows

Thanks Dr Lewis for all you do for us in the chronic pain community.

Elizabeth Isaminger

I had prior back surgery and my epidural did not work either and I had a c-section! I am now 56 and have had multiple steroid injections as well as another surgery on my back.
I have spinal stenosis and have had a cervical disc replaced with an artificial disc. I have lumbar stenosis too. I am losing my ability to walk. I also suffer from diabetic neuropathy and the nerve pain is horrible. If I did not have pain medication I could not function at all.

Maureen M.

Thank you Dr. Lewis. I will surely comment. I am a ‘victim’ of damage done from 2 very painful myelograms and many many spinal steroids injections (using Depo Medrol!) that caused
Adhesive Arachnoiditis. I have some awful stories from those injections… at which one time I became paralyzed (numb) for 16 hours from the waist down. The thought of that day still haunts me.
Thank you for all that you do on our behalf! You are most wonderful!!!

Mickie Williams

Chronic pain patients have been treated like criminals and so many have just been dumped,lost doctors or pharmacies.The few that are still able to be getting treatment feel this is a way to target them.Giving all thier detailed information points authorities to thier doctor ,pharmacy and then thier last option will be squeezed out too.

Sharon

I have tried to type out forms, take the survey’s and make my situation known. I like many have been cut and soon will have zero pain meds for multiple conditions and injuries. I was in a bad wreck and have a TBI. I soon will be completely bedridden after being able to function better on my pain meds for almost 25 yrs. How do those of us get our voices heard when for one TBI patients have a lot of tracking issues, memory kicks things out etc and a body with so many injuries, as well as a diseased bladder….I will die because of no doctor now. No meds. I can’t type or think for long periods without lots of pain problems and brain problems. How do people like me get heard and help stop this with meds, that helped us have a life. I will die. An I am only 65. There has to be numerous others like me. Shar A.

Steven

GOD has a special place in hell for all you government bureaucrats who made life a living nightmare for the chronic pain patient. It’s too late for some of us. Many people have already had to take their lives because they could no longer deal with the pain that you created by denying us our life-sustaining medication. Sadly, I’ll be long dead by the time your so-called survey can even be read. I doubt that’s the intention anyway and this is just more rhetoric that you find so fun meanwhile we die. I’m sorry to anyone that this offends but the truth is based in reality. The loss of life does not just stop at the pain patient. Many doctors and especially people training to be doctors have taken their life as well out of depression, despair and sorrow for having seen there once proud Do no harm career turned into one of giving people death sentences needlessly on behalf of the DEA, CDC, FDA and other governmental agencies who decided that they could do the doctor’s job better than the doctors themselves so just took over. You all know this to be true. I’m just sorry that I swallowed your lies for 16 years that you would continue to meet our pain needs and now instead throw us under the bus literally. How would this not make a person bitter having their life taken away under such horrific circumstances! All of you responsible for this chaos just simply disgust me.