Chronic Pain Advocacy Effort Aimed at Elected Officials

Chronic Pain Advocacy Effort Aimed at Elected Officials

Another effort to educate and build awareness among elected officials and those who hope to become elected officials (also known as candidates) is being launched by doctorsofcourage.org.
They are looking for help to “create a volume of literally thousands of letters that will educate federal, state and local candidates about chronic pain.
Linda Cheek explained that the organization–which she describes as small and hopeful–is working under the assumption that the problems that have been created for the chronic pain community are caused by government interference and political agendas.
They are developing a questionnaire–an ambitious effort that will result in 50 questions–that they hope every candidate at the federal, state and local level will answer.
Tonight (Monday January 6), her organization is holding  webinar to discuss a questionnaire that is being prepared to send to every candidate in each state.
Here comes the rub.
They need help in each state.
“If we can identify someone from each state who will lead an effort to contact candidates in this critically important election year in their state, we might be able to create change,” said Cheek.
It will be a heavy lift
Candidates often have to be encouraged–aggressively–to answer questions that influential special interest groups (Chambers of Commerce, organized labor and others). The chronic pain community is not nearly so influential.
One other issue–as I pointed out to Linda Cheek Sunday night.
50 questions is a lot of questions—and to make sure the candidates answer all those question will be a challenge.
But they are to be applauded for the effort–to try and identify candidates who will support the chronic pain patient point of view.
Let us know if you’d like to help this effort by leaving a comment after this story. We’ll forward the comments to the organization and they ay follow up.
Also, let us know what you think of this effort?
Can it be effective?
Will politicians speak out for chronic pain treatment?
If you had a politician in your living room for five minutes, what would you tell him or her?

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Authored by: Ed Coghlan

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Raz Sey

Along with many here , believe 50 is way too many questions . Jmo. 10 relevant questions . Most politicians know what’s going on , so ,gnoring our letters etc? My best response was from a senator ? I had no idea what to write , so as briefly as I could, but putting in details , about my last appt with the pd that just cut me off , what he said to me , then , how didnt give up , and determined to get help as i knew the issues i have are legitimate , had to be invalidated. Got my ducks in line , find a dr ? Some wanted to give me shots , I asked , will it help my probs ? Uh nope, but can give you rx. Nope ! Since I had no opioid rx, had nothing to lose, kept going. I now found dr to rx minimal , very minimal relief , but after having bad year , almost died from sepsis and now more issues , it’s difficult and like most , just running out of steam. If the powers that be could see a cpp in an appt to get meds , could see what we deal with. If you know “THE” one that would be above those that started this experiment on its citizens and all others would follow “the” one that could change things. It must be brought into the light ! Must be put in such a way, apologetically perhaps, as no one wants to be the bad guy. This mess has been carefully staged by someone(s) in power and $. The media has been a huge part . So on same toke cant they be part of solution.? Buying space to bring cpp”ers together , one place to focus our power and voices. We are so scattered it’s no wonder we are not succeeding. One focus , one voice ! One power , one resource ! Not many small groups. How many would contribute funds , resources ,!time one energy ? If you show folks a direct link in which to focus their energies , more power! Idk imo.

Christine M. Mahon

I would absolutely love to be a part in anything that may help our community. I have fibromyalgia, PCOS and advanced degenerative bone disease. Pain is an everyday thing but I have to buck up and go to work and just grin and bear it! I just had my third back surgery and was not able to get enough meds right out of surgery let alone after all this heals anything for my fibro. I would be more than thrilled to have someone sticking up for me and possibly getting me and others in my situation help. I am in Michigan.

Plus,

Enough is enough.

We should do as the climate change advocates ( Jane Fonda) do…. go out and get arrested for civil disobedience in fighting for the cause.

Such is more effective than waisting another stamp.

I will volunteer.

Belinda Grigg

I would like to help in nc

Debi Bohannan

Sending a 50 question form to a busy doctor’s office seems like self-sabotage!
Questions should establish the mindset toward cpps, such as “Do you believe most patients seeking opioids are simply addicts?
#2 – have you been aware of any physicians pressured by any federal or state agency or board that intimidated you into cutting back or denying opioid prescriptions for their patients?
#3 -Are you aware that the 2016 CDC Guidelines have been rescinded following the devastating impact it had on pain patients & physicians.
#4 – Do you think a federal law enforcement agency should have authority to force you to abandon common medical practices against your better judgement?
… only about 6 more carefully crafted questions would serve us best.
Thanks for addressing the issue with future policy makers.

Terry

I am from Michigan and I email my elected officials weekly. I would be very willing to help find advocates in the public eye. I’ve yet to receive a positive response from my local government. I think your idea is sound and not without merit. I don’t think there is any public official that would be willing to be our advocate but for me, doing nothing is not an option. The only thing that the public knows is that we are a bunch of drug addicts who got addicted to pain medication and then onto heroin/fentanyl. The first thing we have to get any public official/advocate to help us is to give them the correct statistics, which is, 98.8% of ALL opiate overdoses were caused by Fentanyl and or heroin and 1.2% were from legitimate prescriptions for chronic pain patients. They need to be educated before they will ever consider helping us, and before that happens the public needs to be CORRECTLY informed. Politicians are here representing the rights and needs of their citizens and as long as public opinion is that we are a bunch of drug addicts, the will never take up our cause. I will help if you need it. Thank you.
Terry

Carolyn Robinson

Chronic Pain is not for the weak at heart…but unfortunately, most of us become weak at heart due to the neverending misconception of using opioids to live a better quality of life equals being an addict. We can’t go to our doctors, pharmacists, or even nurses. It seems we are cornered into a room of professionals who make us feel insignificant or worthless or both…simply because we take opioids to help manage our pain. My personal pain has now tripled due to the diagnosis of Rheumatoid Arthritis earlier in 2019. What I thought was unbearable pain in my lower back has been trumped by the RA. And it just seems to get worse. It began in the knuckles of my fingers. Now I feel the same pain, pins and needles, and hot flare in my ankles, knees, elbows and hands. It’s very depressing.

This may be the outlet for us…our elected officials. Maybe this is the answer. I don’t know. It seems every time the CPP community takes a step forward, we end up taking 6 steps backward. But, we don’t give up, so yes, count me in. I’ll do whatever you need to help with this new endeavor.

What would I say to a politician? I would invite the politician to spend a weekend with my husband and me. Only when a person views me for several days will they actually see the changes that occur in the life of a chronic pain patient. My husband says he only needs to see my face and knows I’m in a flare or having excruciating pain. They never really understand unless they feel the pain themselves.

Thomas Wayne Kidd

Another idea that will go no where and do little. I am weary of the tortured and mistreatment.. Politicians will ignore us just like they been doing. We are actually living in a time of insanity. Insane people cannot be reasoned with. Some of my doctors are insane. When logic and the subject of our rights being taken away are brought up they begin acting as if we have committed a horrible crime. How can anyone without Compassion or care for others be talked with??….

50 questions is way too long.I would be exhausted answering them and a politician would not even take the time. I would start with the question ” Can you imagine living in pain 24 hours a day and not being able to escape from it?” We should have rallies at their political rallies then we would have free coverage and be heard at the same time. I guess I was only imagining that. I agree with every thing you said Margie. I have also been labeled with names. I would also like to get a bill passed that would make it a hate crime to label patients in degrading ways as it causes a lot of harm and even prevents that person from getting help. So in summary; I agree with your effort / way too many questions/ yes it can be effective/in order for politicians to speak out it has to be advantageous for them/ in the living room for five minutes ?, I would tell them how I have to live every day./ Yes I will help you. Debra Kurtz 9107 Bark Ridge Road Huntingdon, Pa. 16652 (814) 643-6485.

Cynthia

I have written to all of my elected politicians, state and federal, many times. And over the years I have written to them about many things. I usually get answers from them. However when I have written to them about what is happening to chronic pain patients, I have never gotten any responses. There is some reason why they will not engage on this issue. I would like to know what that reason is. And that would be my question to them, ….why is this issue taboo?

Gina Young

I will help in AZ. I do think 50 questions is a lot and may be a turnoff to candidates.

It would be hard to get in to speak to elected official bc they travel around so much. I would like to kn all 50 ? are before agreeing. Issues are a lot deeper than the gov/ political agenda. it’s now so totally weaving into the medical community Thru the use of the mental health & distorting issue for their own lining of their pocket. It’s just a way to find a way to make money for themselves & their friends. Like a few people read their articles that said “just because they complained about the 90 mg their doctors diagnose them w/ addiction disorder & with that they were either dismissed or sent to a Rehab Clinic even though the whole scenario was false.” Or like me bc I’m not on pain medication but migraine medicine is hurting my stomach now so I can no longer take it & I do not want to take Aimovig so something I said many yrs ago is now being used against me as a mental health problem. Why use it against me now when they should have brought it up 8 years ago but all of a sudden bc I refuse to take a medication then my real problem is PTSD. Which is false that the physician made up. So all these new laws & trying to babysit everyone has created harm further than just lowering down to 90 mg but creating falsehoods in people’s personal medical records Force patients to pay more & the insurance company as well. This new mental health / psychosocial has become the way to jailing patient with ankle monitor to make them see a another doctor in the same clinic. The patients opinion does not count whether it has to do w/pain meds or taking medication that they don’t want to deal w/ the side effects. Patient is now dominated by the physician opinion ,has lost all patient rights to say no to any treatment. Kind of Mafia mentality of blackmailing.

Elizabeth Rogers

It’s encouraging that this organization is committed to lending their professional clout to the cause of those living with long-term incurable pain. I think the potential for effectiveness may depend on reaching high-profile politicians and others who have been impacted personally or as family members by this issue. We’ve been inundated with dramatic tales of overdoses, while our side has been largely silent. We need stories that will grab media attention. We need to redefine the issue and separate the responsible medical use of pain medication by compliant patients from recreational drug abuse and addiction.

In any case elected officials may be more inclined to listen to someone with “M.D.” after his/her name. Unfortunately, the experiential narratives of persons afflicted with chronic pain are often dismissed as lacking credibility. I have attempted to garner the attention of my legislators and other officials via email and letters. With one exception, the only responses I received were form letters describing the horrors of the “opioid epidemic” that did not address my issues at all. I wonder if my messages were even read by a human.

One recommendation I would make is to whittle down the list of questions to no more than 20 if at all possible. Politicians are almost uniformly pressed for time, and I just don’t see them or their staff responding to a lengthy questionnaire. Unless the issue under consideration is of immediate and compelling concern to a large number of voters (unfortunately, chronic pain is not), it is unlikely to be on politicians’ “Top 10” list.

If I had 5 minutes with a politician, the above represents much of what I would say. It comes down to separating fact from fiction and hearing the stories of ordinary Americans–many of whom are elders suffering from medical conditions that are not “curable”. If this is done, the 2016 Guidelines will be rewritten and patients will be treated once again by their physicians, not the DEA!

Tina M Stanfa

Believe me there is a great deal that gets shoved under the carpet….i am ready please allow me to help.
My email: tmesinc2013@gmail.com
Phone number: 541-999-9646
Tina M Stanfa

Kris Aaron

I’ll help!
The government picked an easy target when they blamed pain patients and their doctors for drug overdose deaths. They counted on how difficult it is for most of us to leave the house and navigate a path to our lawmakers’ offices. We’re using wheelchairs, canes and crutches, plagued by physical suffering and crippled with exhaustion.
We’re “pain tired” — depressed, frightened and angry at being accused of faking our suffering to get the opiates we desperately need to function.
Making legal prescription pain relief nearly impossible to obtain isn’t enough for the “drug warriors”– they demonize us as “users” and “addicts” to the general public by insisting that nobody needs opioids. They want us to believe physical therapy, counseling, anti-depressants, liver-damaging amounts of NSAIDS, and “pain acceptance” is a better alternative than the opioids prescribed by doctors who have been treating our broken bodies for years.
They cite conflicting studies and point to misinterpreted overdose death statistics as “proof” that opioids don’t work for chronic pain. They ignore evidence that illegal fentanyl and poly-drug abuse combined with alcohol consumption is causing the vast majority of opioid-related deaths.
Yes, I’ll help as much as possible. I’m tired of being seen as a villain when I’m one of the victims.

Yes I agree this will be good to send letters to candidates. Candidates will always try to please the people.

nana

While I applaud any and all attempts to bring sanity to the situation I have to say chances are slim to none at this point because everyone has lined up on their respective sides and they hear nothing beyond “I am a patient” or my Son lost his life from…” (mostly for real honesty sake that finishes “because he was rich or desperate enough or enabled enough to party on his friends street drugs.”)
I think it has to be in your face pictures of the desperately ill and in pain patients (maybe a hidden camera of them begging for help or being lied to with “you didn’t pass your drug test so we let you go as a patient.” scenario.) Maybe a picture or portrayal of a college boy’s eyes lighting up as he said “yeah I will try that.”
I think one or two flashes of real utter excruciating pain. This is an impatient society. It is all over after the first few minutes or seconds. It has to grab you in the first few seconds or they channel.

Transparency is needed. People who grow and sell pot should back off because when they earnestly advocate: “for the best.. for cannabis,” it comes across as a captive insincere pitch for business. Even if they have an illness causing immense pain. Not a lot of studies support any use of substance that improves pain, cancer, anything..And Kolodny is known for misquoting or lying about studies. He picks and chooses what parts of studies he uses. He makes a lot of money on abstention. He throws out studies 5 years old when things have changed in the last 5 years. To say “it is much better.” would not bring in the $500,000 speaking fees. It has become very much like wall street. The ones pushing their angle are making their living from it. We need to get back on track.
If only we could boil down the bs, take out people profiting from that that they hawk we would have a more honest, working platform to start helping people in need.Otherwise it is just “TV.” Because it is repeated so often it is mostly boring disingenuous tv. Change channel.

Heidi, Seattle WA

This is a great effort, but this same push needs to be made to all medical societies, and to the medical schools, to counteract and counterbalance the anti-opioid propaganda being taught.

Curriculum in medical schools must include A LOT MORE pain management, including true information about opioids, not the hype currently being offered to medical students!

Dave

Yes, I’ll be glad to be a part of this and do what I’m able to contribute.
I personally consider 50 questions a bit much and I’m sure you have your reasons.

Heidi, Seattle WA

YES! Sign me up here in Washington State! I am the advocate and caregiver for my 20+ year CPP husband who has been force-tapered to an ineffectual amount of pain meds, and being forced into PT and counseling to learn how to live with his undertreated pain, again, only causing him more pain and anxiety. I don’t have a lot of time but am sure willing to do what I can!

However, far too many doctors are being taught, and are believing, the anti-opioid propaganda and believing the holistic only treatments. We need to find more doctors willing to stand up for the FACT that opioid medications are an integral, and very effective part of pain management! They sure are nonexistent here in WA, at least I haven’t been able to find one in more than 2 years of looking.

Again, where are the voices of compassionate doctors who want to treat their patients without fear and interference from Government? Please, I call on doctors to stand up for those who are living in so much misery, without much hope of ever achieving even a minimal quality of life.

Doctors, where are you?

Judy Dunn

I am almost 71yrs old, I grew up during the drug years. In those days people took responsibility for their own addictions, they didn’t blame the Doctors, the Pharmacy’s, the Drug Manufacturer or even the Viet Nam War.

People today don’t take responsibility for their own failures so you get a Country
That is falling apart, it is completely upside down.

I have been a Chronic Pain Patient, with several, lung, bone, muscle and heart diseases, sinceb1992. I have been on pain meds since 1998. I do not get high
While taking this medication, it just numbs my pain enough for me to function on
a daily basis. I also take several other medications on a monthly basis for my
Medical problems.

Since this opioid crisis started, my Primary Care Doctor decided that he could not
Longer write my prescription for pain meds even though he had been doing it for years. I was forced to drives miles away to a Pain Clinic, my prescription reduced
To (2) pills a day. I was also informed that I had to return each month & bring my
Pill bottle, if I forgot the bottle, NO PRESCRIPTION WOULD BE GIVEN.

I now have to drop off myprescription, wait or come back in (2) hours to pick it
Up and than be abused by the pharmacy staff because I am one of them.

Chronic Pain Patients are being treated like Addicts while the Real Addicts are
Being treated like Victims. They are being given a drug to bring them back from
an overdose, but most, are doing this over and over again.

***COMMON SENSE TELLS YOU IF MEDICATION MAKES YOU FEEL FUNNY,
CALL YOUR DOCTOR…….THE PEOPLE THAT OVERDOSED, DIDN’T DO THAT***

Martha

I applaud the effort as well. All politicians need to answer to this issue, as to where they stand…and why? Education can only help our cause. But why stop with politicians? News media outlet heads & star Anchors need to be tasked with understanding our plight, as they so often get it wrong.
50 Questions is too many, it would become annoying at that point.
The questionaire should end with a 1 page, printable set of Bullet Points of facts headed by: DO YOU KNOW…

Elizabeth Dehler

I agree that 50 questions is a lot and I’m not sure if we can keep the politician interested for that long, especially about an issue that most of them don’t care about. However, I am interested in helping. I feel that for me personally, an in-person meeting would be more beneficial. I want them to look into the eyes of someone who has an intrathecal pump with dilaudid in it. As well as someone who has taken oral narcotics for 10 years. I want them to see what the average Chronic Intractable pain patient looks like. I was a hospice nurse for 25 years before my problems started. I was considered an expert in my field. And I want them to know that if it can happen to me….I’m in Long Island, NY. I would like to help, if I can.
Thank you,
Elizabeth Dehler
9 Dell Lane
Wantagh, NY
11793
516-551-7449

Harley

I would tell them… I have been a chronic pain patient for 30 years I have tried alternative methods available… acupuncture, massage therapy, herbal supplements, medical marijuana… everyone is different and those modalities I’ve tried do not help with my bladder disease… if they would give us our pain medications back a lot of people could go back to work and pay into the system again…the issue I have is I have an invisible disease and most people view us in a negative light.. it is inhumane to take away medications that have helped some people live a somewhat normal life… please help us…that’s what I would say…

Kitty Hicks

Because we are frankly an ignored group of constituents, and often viewed as problematic, even irritating to the candidate a questionnaire of 50 questions would likely be waved away.
I think a better approach is to dramatically shorten that list or even better, approach them with a patient friendly but sensible draft of more clear and concise legislation. Most importantly we need to make it very worthwhile for them to tend to our issues…
Difficult to do when these candidates are blinded by millions of dollars in Grant’s, and deafened by the narrative already out there.
If you want candidates on board, you MUST get the media on board first.

Granny

Only 5 minutes…hmmm. Reminds me of the ‘elevator speeches’ we used to have to create, as up and coming Executives, just in case we bumped into a higher ranking exec “in the elevator”.

Hmmmm… The first and foremost idea I would convey is that many lives are being lost, and many others are suffering through unnecessary, excruciating pain as a direct result of the writing and implementation of the CDC “guidelines”. The second key factor in the short conversation would be a series of valid statistics demonstrating the material impact on Chronic pain patients of the CDC “guidelines” that were treated like LAWS by pain clinics. Thw third and final aspect of this short speech would be factual anecdotes about the number of chronic pain constituents and some specific stories about their lives..stories of forced tapering or complete removal of critical meds..stories of suicides and stories of people still able to work and be productive when meds are given AS NEEDED!

3 key topic areas. Statistics to keep it factual and actionable. Local stories to make it relevant.

Laurie

While I am far too ill from this drug war inside American medicine to be a contact person, I support this effort and applaud it’s goals.

I think this will, at the least, raise awareness in the political context.
Too many of our “leaders” are being knee-jerk about this and seem to consider it a “moral” issue. It certainly is THAT! But not in the way they think.

I recall early on that the WHO called denying pain patients their medications “cruel and unusual”, but, of course, American presidents and politicians are always right, right? And money ALWAYS talks in America!

This really needs to be in press releases as well as questionnaires.
Thanks for the link to Doctors of Courage. They sure seem to get it.

Barbara Snow

I would ask them if they knew how PROP started and why? And ask them to look into it and see if they can find out that answer? I think I know.

Thanks, Ed, for spreading the word about our Communication Campaign. The 2020 election is so important in stopping the attacks on the treatment of pain. There are bills before Congress now that, if passed, will worsen the future for pain treatment. And most of this is due to failure to communicate. One letter, 10 letters, even 100 letters will probably go unrecognized. Since the pain community doesn’t have the money to put in legislators’ pockets for their vote, we need them to understand that our power is in our vote. But to vote correctly, we need to know where they stand. With the bills in Congress now, we know how some (the sponsors) stand, and in many cases, those sponsors need to be fired. But we need to pick the best candidate to replace them.

The purpose of the candidate questionnaire is to gather understanding of where the candidates stand on the issues. It is also to educate them to the truth about opioids. If this isn’t done, we are looking at another 4 generations of suffering and increased addiction, because the current methods being used by the government actually increase addiction.

So we need help, as you point out. We currently have 8 people signed up for 50 states when we need hundreds, to make the work easier on everyone. So I hope people will join us and be a part of change. People can sign up for their state, and then also volunteer for other surrounding states. You can do this on the contact form which you can click “Contact Us” at the bottom of the post about the questionnaire on the homepage of http://www.doctorsofcourage.org. Or, like Ed says, he will pass on your information to me. I need name and email address. You can also contact me at lindacheek@doctorsofcourage.org.

Thank you for your support.

Cary Cassell

I’ve been contacting elected officials for yrs. . Most will just brag how much they have done to stop the “opioid crisis”. They don’t want to hear everything they have done has made things worse.
The few (one) who really listen have told me their co-workers don’t want to hear from patients they want to hear from the doctors. After asking every dr I went to (roughly half a dozen) not one would agree to contact the only politician who told me they would be open to talk to Drs about the subject. ZERO.
I am so tired, so wore out what little fight I have left in me is going towards just surviving the pain and disability brought on by thirty yrs of a a disease I had no control over wether or not I have.

Mary

This is a great idea! My opinion is that most wont take the time to actually answer the questions. My hope and prayers are they would seeing this issue is a major concern in our country.

SHEILA GAIL GOMEZ

I would tell each and everyone of you that are running for some kind of election you must do something about our pain it’s real it’s debilitating and it’s making our life hell my life changed a great deal it went from 100% down to 50% and who gives a damn no one I’ve asked the doctors not to change me but according to the DEA and their laws they said they have to get you down to 90 mg this is absurd if they would go into each and everyone’s folder from primary care doctors neurologist CAT scans MRIs and whatnot they would see that we are not playing around and we do need these pain pills they don’t understand because they probably have never been in pain like we are especially me I have Crohn’s disease osteoporosis osteoarthritis scoliosis RSD fibromyalgia migraines neuropathy myopathy degenerative disc disease and yet they’re cutting down my pain medication and they have already taken three away from me which I need them desperately if you want me to speak to someone I will I have already written to Governor Casey Pat Toomey president and God only knows who else and no one has answered me or given me any explanations except this is what we plan on doing and they’re sticking with it tell me is it worth it no is it worth living like this no before I was a hundred percent doing all the things that I love to do now I can’t do them there are days that I just lay around because I’m in pain with the migraines my Meniere’s disease oh that’s another disease I forgot I had these DEA officials should look into each and every Buddy’s folder not just from the pain doctor and what he’s prescribing that doesn’t tell the whole story and I would be willing to say my part to all of you and I don’t care who it is you’re letting us all down and I know when saying is my faith and God will never let me down where as you people do thank you for listening to me now please do something for all of us not just me but all that are in pain and are not going around selling our prescriptions

Sandi

I live in South Dakota and I will be glad to help. However, I have been reaching out to my local politicians for several years to no avail. I am just giving up and that does not feel good. I am so exhausted. And so full of rage! Let me know what I can do to help. Thanks.

Chris Ward

I would tell him or her that I still had debibing pain in my left nut .Doctors is not up to speed as they think they are which can ruin someone life and make them give up on the whole system.Just because we’re a sullevince state don’t mean they know everthing they think the know.Life is not the easy.God bless the pain advocates fighting this.Some of the govt fight is legit some of is not .Thats only my opinion.But that what I see in my eyes.

Chris Ward

I totally believe this is all been govt overreach hurting chronic pain patients!

Bram Judy Cast

I wrote to my Senators and Congressman. I only received one reply. The others just sent computer generated letters. Generic.
If this will help, to send them the questionnaire; I’m all for it!