How to Make Change in Chronic Pain Policy

How to Make Change in Chronic Pain Policy

I happened to catch a television interview with Georgia Congressman Buddy Carter on Wednesday. Carter, who is a pharmacist was discussing the Washington Post Story that said six companies “saturated” (their term) the country with 76 billion oxycodone and hydrocodone pain pills from 2006-to-2012.

The Washington Post story is here.

Congressman Carter said that Congress needs to be concerned about overreaction “because we always overreact, and added “some people need these medications—they do work but are highly addictive.”

It caught my interest because I was scheduled to speak with Amy Coombs—who is a lobbyist in Utah who is a licensed social worker/therapist and a chronic pain patient.

We’ve been working on story about why the chronic pain community has been unable to get its point across during the opioid “controversy” which has led us to speak with a number of people who represent groups (or have started groups) that putatively represent the pain patient.

I wanted to find out what Ms. Coombs thought—and she gave some perspective which we’ll discuss in later stories.

She also pointed out pain patients and pain physicians are actually on the same of this issue—government interference in health care and that they should be working closer together.

She also indicated that while there is understandable emphasis on the federal proclamations of the Drug Enforcement Administration, the Centers for Disease Control and the FDA—much of the action is at the state level.

When I suggested—as I have in past articles—that there are really 51 pain strategies (the federal government and each state) she said that sometime it’s more than that given the byzantine way many states and their regulatory boards and commissions dictate pain policy.

But she comes from a point of view that pain advocates need to tell their story better because, by and large, most state legislators and congressional representatives simply don’t understand chronic pain.

“When legislators know, they do better. You can help them learn, but I’ll guarantee you that yelling doesn’t work,” she said.

Coombs thinks there are things that pain patients can do to improve the quality of pain care in their states (and their country)—but first they have to have some basic knowledge.

  1. “Do you even know who your local state representative, state senator or congressional representative is? If not, look them up,” she said.

“If you’re a constituent and live in their district, they are more prone to listen to you,” Coombs said. And by the way, do you know them or do you know people who know them?

“Even better.” She said

  1. “Send them an email.”

First of all, tell them you’re a constituent. That always help make sure they read the email. If there is legislation you are in favor or oppose, tell them.

  1. Be Concise.

Define the issue. Tell them why it matters. And ask for a discussion with the legislator or a staffer. (remember if you are a constituent, you’re more likely to get a meeting.)

  1. Hire a lobbyist

I can hear you now. “How the hell can I hire a lobbyist, I’m broke!”.

Perhaps.

But the local AMA, the Pharmaceutical Industry, and others have lobbyists in your state capital—reach out to them. Tell them your story the way you tell your legislator (and copy your legislator)

  1. My problem is not legislation, it is the regulators (Insurance Board, Medical Board etc.)

Even better. Write them a letter of complaint (your physician, your hospital, your insurer) in an email and copy your legislators (and the other way around). The idea here is to create as much discussion as you can with people whose attention you are trying to get.

  1. I’ve got a meeting with my legislator or his/her staff. Now what do I do?

This is important. Tell them your story, not from a point of view of personal “woe”, but from the point of view of you representing other patients. “if this is happening to me, how many thousands of others do you think are having the same problem?”

If it’s legislation—leave a one pager that says why the legislation is good or bad. If you’re just trying to build awareness, let them know how many chronic pain patients there are (100 million) and

  1. I’m not alone.

Prove it. Who are the other pain patients in your legislative/senate or congressional districts? If you don’t know, use the National Pain Report commentary section, contact the U.S. Pain Foundation or ask your pain physician to find other people in your zip code, in your state.

Amy Coombs is there fighting for pain patients (because she is one). There are others, perhaps even in your state. We look forward to introducing you to them.

Amy Coombs, MSW, CSW, CCTP, HRMC
President at  Prestige Government Relations & Consulting Group

Authored by: Amy Coombs

Amy Coombs, MSW, CSW, CCTP, HRMC President at Prestige Government Relations & Consulting Group

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Chris Ward

Thank you.That gives me hope.God bless you and we need to heard everyone voice because some in the system did wrong don’t mean you hurt all the people who need there med in some cases life or death!

Renee

Thank you for the info! I am a chronic pain sufferer to do a car accident, genetics and Ankylosing Spondylitis. My mother and father both are as well. The amount of stress our family has been put through has been unbarable. Not to mention the stress that has put on our kids and husbands as we suffer. I am a 36 year old woman, business owner, childcare provider, wife and mother. I am, well was as active as I could be, do to the help of pain management which took me years of suffering and trial and errors to finally get to the point of being able to continue a productive lifestyle. Since the epidemic I have been placed under extreme stress which does not help my anxiety, that I have also been able to keep under control with medication. Prior to finally finding relief through medicine and of course excersice, physical therepy and therapeutics, I was hopeless. I wasnt able to be the mother I longed to be, not to mention fullfill my duties as a wife and at my workplace. For several years now, I have been able to control my pain through the techniques listed previously and with the help of pain medicine. I have been able to be the mother and person I have longed to be. I no longer have to lie in bed crying that I am in pain and I cannot do things or go places with my children, I am able to make it through an entire work day without being doubled over in pain, we can take vacations, I can help people who need me and so much more. Words cannot expain how being able to control and manage my pain by the use of pain medicine has changed my life tremendously. My family sees a different person, until now. Now once again, not only do I suffer but everyone around me does as well, and my anxiety is uncontrollable. My doctor has weened my
medicine to the point that I hardly am taking anything now, so it doesnt touch my pain and also did it abrupty if not all at once, including my anxiety medicine which has made me once again, a useless, helpless, suffering individual.

Glen

Right now it is the Doctors “policy” that matters. This is either driven by fear of State licensing or (in my opinion) he or she being a jerk. Sure, Federal Agencies recommend but do not dictate. If they did no one would be using marijuana.This is licensed for two reasons. 1. Revenue from tax 2. People will get it anyway. The same goes for all drugs including alcohol and tobacco. I’m still trying to figure out why they tax toilet paper.

Researcher

Sioban Reynolds Pain Patient Advocate stirring up things in Washington about 7 years ago? Anyone know what happened to her & her advocacy group?
How did Ms. Croome come to be under the impression these State laws start at the state level & can be changed at the State level?
It’s the FDA, DEA, CDC, CIA. ..all Federal groups who ultimately make Drs & pharmacists choose between their license, or doing the job they are trained to do.
Waiting for a success story with any level of the government, I have yet to hear of one. Even if you KNOW them, they won’t&cannot change a law that came from the federal level for a CPP or a group of them.

Researcher

That’s a nice story, I’m sure Mrs. Coome means well. The only way a ANY government official cares is if it’s their Mother…. maybe.
State level may be where it’s happening, but it’s no different than federal level.
The government is well aware of what it’s doing.
The Post article is 2007-2012….what year is this?
Right, the DEA AND FDA knew what was going on when pills were “overprescribed”.
The DEA has been cutting pain pill production since 2012….and the DEA’s info they put out is totally irrelevant…being 7 years old.
The Federal level knows what it’s doing on a much larger scale, it just trickles down to State level, it doesn’t START at State level.
Someone tell a success story on State or Federal level….exactly. There’s a reason for that.
Who’s suffering? Veteran’s, CPP’s; & addicts (where unemployment rates & depression is high). What do those groups have in common?
Why blame addicts, they aren’t doing this because they are powerless.
People just will not admit the government has a agenda, & part of that is harming the above groups (addicts were created by the FDA allowing prescribing & overprescribing to those not in pain, Check Purdue) for what the government considers “the greater good”.
What happened to Sioban Reynolds? Pain advocate? Anyone?

Mike j Gilligan

I e-mailed Cong Peter DeFazio (D Or) when I first read that Congress might be asked to support legislation on Chronic pain. His response spoke about how Congress had helped make hydrocodone a CII drug and that they were aware of the opiate crisis. Didn’t come close to answering my question which was to support legislation that makes sense for pain patients. Oh well at least I gave a staffer some busy work!

Sandra Cripps

I sent emails to everyone I could think of I got 2 replies 1 from my congressman
en Joe Morelli, which was so far off the subject. He responded with the support for students with disabilities act and their right for education. What? Did he even read my email! And the other response was from Senator Kristen Gillibrand which stated your thoughts and concerns are important to me due to the high volume of emails I will send a more detailed response later. Well, that was April! I followed up on this a week ago and have gotten no reply yet! She was one of the ones who signed this whole mess, to begin with too! I don’t expect to get any more replies as I sent all of them out in March! And yes I did do as you described above I spoke as a whole community, not as an individual crying the blues so do tell me where did this get me and others? It sounds like a good plan but nope it’s just pushed aside, we don’t matter to any of them!

Gary onofrio

Same nonsense from some young person who feels the need to list every little title yet from what we know has never experienced long-term or even short-term severe pain. I’ve been a counselor, clinical coordinator of cocaine research for Yale School of Medicine, and then lost my position for being out more than a year after staff surgeries complicated a knee replacement. Pain medication does work, there is nothing else such as Tylenol or any other alternative treatment that does with this can. For those with intractable pain where surgeons tell them they can’t help, they’ve tried all the Alternatives they can afford, and will be in this pain until the day they die it’s no different than having to take insulin everyday . If they don’t take their insulin severe things happen including death. What chronic severe pain does to the brain , increasing depression, increasing one’s cortisol levels at all times which has you like a cat ready to spring on the ceiling . Your daily life is centered around pain, as far as trying to be with it and meditate, let me crimp a nerve in your spine and see how well you meditate. There are something called amino acids, which are the building blocks of protein, that can help the brain’s neurotransmitters stay active. I will try and create another email to explain further. I was recently featured in a national article from Montana for helping a 58 year old man after he was dropped from 400 to 100 mg of morphine in less than a year. All doctors did was add more drugs for each symptom of withdrawal they didn’t understand. In his own words he would have either committed suicide are felt he would have died. Why are these not more studied or used, the answer usually comes down to money. It goes back to when tryptophan was-band in the late 80s after a new manufacturing process in Japan was not thoroughly tested and several people died along with thousands being sick. Coincidentally enough, Prozac was approved by the FDA.

Jeff

Amy,
THANK YOU FOR THIS ARTICLE AND THE ADVICE WITH GUIDANCE FOR ALL OF US!!
I personally don’t have self pity or self sorrow truth is very simple our ability to fight our pain and get reasonable relief on a continuous basis has been greatly reduced because of our local and State and Federal governments highly over reactions and as your well aware has violated our basic human and medical rights to do what’s best for us (the real pain patients) which we have nothing to do with this epidemic it is caused by illegal drug use not us.
I have been on opioid treatment for almost ten years and probably should have been much earlier than I finally broke down and couldn’t take one more day of the pain as a man and bread winner for my family I kept my suffering to myself until I learned that it was effectively disrupting control of my Epilepsy treatment seizure after seizure my neurologist and GP kept questioning me why the loss what changed all they knew is my blood pressure had gotten very difficult to control and kept telling me my pain levels were much higher than expect after a tonic clonic=(gran mal) seizure. So I finally told them what had been happening to me upon several X-Rays and other tests they figured out I had the double whammy Psoriasis with psoriatic arthritis and ankolosing spondylitis all extremely pain medical conditions then they started sending several specialists in my hospital room to see this last cluster of gran mal seizures caused me to get seriously injured in a large retail store (Meijers) when the Rheumatologist was done with all of her tests she had discovered the years of no treatment had taken its toll on me along with the loss of control of my epilepsy my career came crashing down on me then before I knew it a spine surgeon was in my hospital room telling me if I do not let him operate and help me it would take six months or less to live in a wheelchair two months later a six plus hour surgery and here we are countless surgeries and fight for

Gail Honadle

You tell us to contact our Legislators who DO NOT READ Email, plus if you are NOT a Constituent it will reject your Email. CALL that phone Peon knows 0 about the issue besides the Canned Message. Snail mail takes months because of the Ricin scares to be screened. My US Rep is to busy doing Chamber of Commerce Photo Ops in DC or where ever he travels. But won’t go to the Horrid VA Hospital in Memphis, or hold town hall meetings in each county in his district. In fact I think they shred our emails. Tricare sent a letter that the Linzess I have to have for Gastroparesis needs Prior Approval, strange I’ve been on it for 3 yrs and you just now need Prior Approval, takes weeks to do that I’m given 2 weeks. Or I’ll have to pay full Retail Out of Pocket, $500 a month. Not the Tricare Co-Pay. Is this the Crap health care my husband spent 20 yrs in the Navy for? Not to mention Medicare which has $65 Billion in Fraud. I’m a spouse and receive less care. Took 2 letters, and it’s only good for 1 yr.

The only people who are OD’ing are those who use Illicit drugs, They get to go to Suboxone and Methadone clinics. WE DON’T, we are treated like criminals, tortured that exceeds the level of the Hanoi Hilton, WW 2 POW Camps all rolled into 1. Many of us are barely able to make it to the bathroom on our own. And you expect us to go to a Pain Clinic designed for walk in’s. TENNESSEE lost over 300 in 1 day, 1 more since leaving 64. That can’t serve a whole city the size of Memphis or Nashville Illicit Drug Population, much less Pain Patients, they haven’t the Education level to treat Lupus, EDS, WEDS, DUCHENE’S MD, PS, Parkinson’s, FMS, Lyme’s, Gastropresis, Thyroid pain, yes being Hypothyroid leaves you in Pain. Spinal Degeneration caused by FDA approved drugs. GI issues caused by FDA Approved drugs. And no that Steel Medtronics Spine Stimulator won’t work, especially if you have a history of Adhesion’s. Means NO MORE MRI’s. More surgeries to change the battery causing more scar tissue

Mareaeric Campagna

Here’s the thing, people who do not have chronic pain have NO IDEA what it is like having to live on a daily basis with pain. I’m talking around the clock, during the night, waking up with it….. in the car, on a walk, all the time, every situation, for years and years. (Eighteen for me).
And, why is it that when I am in great discomfort, racked with pain, and absolutely nothing else will rid my body of the horrible discomfort, does my pain subside after I have applied my Fentanyl Patch or taken my Oxycodone for breakthrough pain?
You tell me

Dave

For the doctors shaking under their desks, …not the ones we know and love and have been persecuted or imprisoned, I stopped mincing words and being polite always. Without being vulgar and after establishing the truths to the “doctor of medicine” in front of me I told exactly why I should get ‘this medicine’ in ‘this dose’, …and THEN being told “No”, I let fly.

The results were not good for the pain medicine I need, but I educated the doctors in a new way and now they are afraid to BS me.

This is what I did…
Now I have been working hard these last couple of years for our pain crisis and my view of our problem is uncommon. BUT as Dr. Kline said ‘it’s time to load for bear.’

I was at the point long ago that when I needed to call them torturing dogs, I call them torturing dogs, when I needed to call them Mother Killers, I call them Mother Killers, when I needed to call them Cowards, I call them Cowards. Thankfully it’s all is on my notes each “doctor” sees. The value is that they now know they are wrong and that I know that they know they are wrong.

True they were unmoved about why I thought I now had heart failure. But they were careful not to BS me. I ‘forced their hand’ when denying me. I didn’t let them tell me a sad story. They HAD TO DISRESPECT ME TO MY FACE. They had to admit they were cowards, …even if it is just inside themselves when they walk away, sit and eat, look at their kids, pay a bill, before they go to bed, sit in church, or when they wake up in the morning.

Glenda Locke

Thank you Amy . You have explained the process . That is more than half the battle in getting legislation passed , stopped , or getting us in the right direction. I feel all of us need to focus on the goal ….move forward . Not get mired down with what has happened and is happening and let’s make a push for change . I am a Chronic Pain Patient . I have a vested interest, and I appreciate all you are doing !

Madelyn Bourne Sylte

My main concern is I have been on opioids since my first wreck in 1994. Since then I have had four more wrecks not all my fault and have 7 necessary surgeries. I have been on these type drugs for over twenty years. And now he DEA., President Trump and so called do gooders of our great country want to my us pay with pain beyond humain just so they can say they save a bunch of junkies who don’t want to live anymore. I’m so sorry I want to live just not in constant pain and croninc pain that there’s no cure.

SO LIVE WITH YOURSELF

ruththella white

Stop making this political. Stop asking us to go hat in hand and beg for what we are due according to the law. People are dying. Have you noticed that all parties bought into Dr. Kolodny’s blame the CP doctors and patients not just democrats. In 2007, I contacted Dr. Portnoy for help because I had my pain medication stopped and was crawling around my floor because I couldn’t walk. They found a doctor to help me. Now, I hear he is being sued. Follow the money and who benefits. Yes, contact your legislator, but it is long past time to file declaratory relief and TRO complaints in federal court. We have laws, but only two people have gone two court. WHY?

Cindy

I just reread today’s column and must disagree about sending emails, and here’s why.

Months ago, I sent Sen Marco Rubio an email about our issues as CPP’s.
In response, I got a canned response about the horrible opioid epidemic.

So, I sent another email, explaining that my concern was the opposite of their reply and going thru it all again.

I got another canned response about the terrible opioid epidemic.

That’s when I knew I had to call and speak to a human being, although it took me a few weeks to feel up to making the calls to my 3 federal legislators.

Given that our issues have so little public awareness and that the country is focused on the abusers, I think that talking is much more important than writing, even though for people like me, talking is a lot more effort.

Randall Johnson,I feel like our government has turned there back on me and millions of others. I live in fear and pain every day,and i don’t know what to do. America needs to know the truth.People go to jail for mistreating animals,and if this is not mistreatment,what is it?

Glen

The word “Change” should be “Stop”. That is all they have been doing! For the past six years I have lost count of all the changes. No one who has already made up their mind will change because we write or phone legislators. It is like trying to talk someone out of their Religion. Now….Why was “Prohibition” lifted? Do you really think that is was a change of mind? We know it was moral and religious pressure on Government intended to “save us” and Americans are doing it again. They went after the suppliers and distributers as they are doing with opiates. The difference today is that a small percentage of the “consumers” are punished for something they did not do. In our present situation, people could and should petition State Medical Boards to STOP making changes, let Doctors be Doctors and Patients be Patients.

Nina Monico

Part 2 of 2 – lose his license. I was confused and upset. I thought this was just a nightmare and I would soon wake up. I thought, “You gotta be kidding me!”. How can a be referred by my Occupational doctor who refused to prescribe opioid pain medicine to help get me through the failed spine surgery I had and now suffered more nerve damage and fractures from its failure. She did prescribe Tramadol only for 7 days. Then this physiatrist who’s suppose to treat severe chronic pain tells me he can’t prescribe any opioid pain medicine was crazy. He was scared. Thank God with prayer I found a doctor and practice who are more than certified to successfully treat severe chronic pain with opioids. What I’m angry at is the insurance companies and medical boards who make it impossible for true severe chronic pain sufferers, who have been drug tested, have kept every medical appointment and have tried every other pain treatment they are required to before being eligible for opioid pain treatment and don’t want to approve the only form of pain relief. This should be malpractice! I wish all of us (severe pain sufferers) had the money to hire lawyers that would sue the insurance companies doing this and the doctors who do this for malpractice. Why is it that every city and every state has their own laws and regulation of opioid dispensing? The other thing is Trump Administration. Some pain sufferers voted for him and one of his biggest campaign promises was to end the Opioid Addiction. The only thing is that most people die from the illegal use of opioids such as: Heroine, illegal forms of Fentanyl, Illegal use of opioids( doctor shopping and no drug testing) , illegal forms of opioids sold on the streets. Most if not all chronic pain sufferers receive and take opioid prescriptions as prescribed legally and abide by all their doctor’s requirements. This Administration needs to understand that not all opioid prescribers are abusing this drug and are using it as the properly.

Walter Strickland

Hi Amy,Terry James in his comment in the below is a very good idea,as I would agree to a fair and unbiased discussion on a major news show with our best experts and supporters in the treatment for chronic pain.Will have to be sure they are not being set up for an exicution type of discussion , happens all the time,but our best people are very good at handling themselves very well and will fight off the cheap shots and mis information and will show that the CPP people are in need of the best treatment available to insure to offer a decent QOL so we can continue to be productive in society,with our jobs we desperately need to be so, to be more able to take care of our family responsibilities.Amy,is this even a possibility to have done?

Steve M

“here are really 51 pain strategies (the federal government and each state”

So, DC doesn’t have a pain policy? PR doesn’t? American Samoa doesn’t?

Anyway, the states took their cues from the CDC and DEA.

The federal government could makes opioids OTC and the states would have to such it up. This would actually stop the overdose problem. People overdose because street drugs don’t have known potency, purity, or dose

Opioid OD deaths (illicit and Rx) are up only 1 in 100,000

Rx opioids killed about 200 people last year.

Addicts need to stop take precedence over pain patients. We follow directions, we don’t take these medications to get high. Honestly, I’m fine with a million addict deaths (it’s their choice and we’re nowhere near that) if we stop having cancer patients and soldiers committing suicide, having heart attacks, and having strokes.

In reality, pain patients have been getting less and less (35% less in the last year) since 2014 and overdoses rose.

Nina Monico

I’m frustrated that so many chronic pain sufferers in other states , as well as mine (CA) are not only suffering from physical pain, but have to fight with whatever sanity and strength they have to obtain the bare minimum of pain control and care. It’s sad and just unreal. Thank goodness my city in California seems to want to help, understand and provide the pain management and care to their patients via opioid meds. Depending on the doctor, insurance you have and the ailment, such as fibromyalgia, ms, Cancer or what I have (back injury, nerve damage and multiple surgeries) you will receive the proper pain meds. By proper, I mean, opioid prescription, that’s the only pain medicine that has relieved my pain and of course like other chronic pain sufferers, I’ve had to try other meds, which didn’t help before the doctors decided to put me on a 24 hour a day regiment that helps relieve my pain substantially. They provide
Comprehensive interventional pain management – Therapeutic regenerative therapies – Minimally invasive spine care. Because it can have a huge impact on your care. If you are being referred to a pain specialist, ask your referring doctor if the pain specialist is ACGME certified as non-ACGME pain specialists have not gone through an approved, formalized training program. The reason I bring this up is that there are many local pain specialists who are not ACGME board certified, and it is your right to request to be seen by a pain specialist with formalized and approved training. My physiatrist and his group have this special training from Stanford, Harvard and the Mayo Clinic. I hope this information helps my fellow chronic pain sufferers. I suffered so much before I found my current treating doctor. I had one Occupational doctor who refused to give me any opioid pain med for my severe chronic pain and she said she had to refer me to a physiatrist and then he tells me, he can’t prescribe any opioid pain medicine because he was scared to – Part 1 of 2

Cindy

ps to my other posts –

To each person I spoke to, I emphasized that they themselves are one injury or illness away from becoming me.

I went in for routine surgery at age 52 — a decade ago — , expecting to return to work in a few weeks, but never did; developed an acute pain syndrome from the surgery which did not respond to any treatment and I’ve been out of commission ever since.

I also emphasized that I have tried a zillion non-opioid treatments and non-opioid drugs but nothing helps but opioids.

And that the data proves that OD’s are not caused by CPP’s on legit Rx’s.

And that it’s unconscionable for pharmacies to reject legit Rx’s.

Please do look at that June 7 NPR post for tips on contacting state and federal policymakers — creating policy change from your couch — http://nationalpainreport.com/creating-policy-change-from-your-couch-8840001.html

Cheryl Smith

I was a healthy person working full time 50 plus hours a week as a RN when I was in an auto accident. I was hit from behind on the left side by someone going over 50 miles per hour. I was able to drive my car home. I felt my neck and lower back snap. My right shoulder was jammed by the gear shift. . I was checked out by my works health clinic and was told I had whiplash and bruising in my shoulder. No cervical collar was given to me even when I requested one. That was the last day I worked in October if 1995. I had been told it would heal in time. I have been in acute and chronic pain since. Living with chronic pain is a way of life for me. If my pain level is a 4 I,m having a great day. Those are rare. My pain levels are in the 5’s to 7’s with medications. I deal with workman compensation for my surgeries, treatments and medications. The red tape is endless, denials of different pain therapy treatments or enough for decreased pain, and then denial of medications . Plus the tapering
of pain medication when awaiting surgery . I have had 3 spinal cord stimulators. I have undergone 7 surgeries and am awaiting number 8 . As a RN I still try to help others in need. Share my story and try to give others hope. People see me and believe there is nothing wrong with me. WE MUST VOICE OUR CASES TO THOSE IN POWER TO HELP ALL OF US. PLEASE DON’T GIVE UP

Cindy

ps to my first post –

The June 7 NPR email — http://nationalpainreport.com/creating-policy-change-from-your-couch-8840001.html — has specific guidelines for contacting legislators.

I highly recommend it.

Unfortunately, when I finally felt up to making the calls to my federal legislators a few days ago, I wasn’t up to refreshing my memory by reviewing that column, and since i’d wanted to call for so long — ever since that June 7 column — , I felt that it was more important to call and do the best I could, vs reviewing the column and attachments and then be too tired to call.

Next I plan to call my state legislators and Bd of Medicine and other relevant gov’t personnel.
I live in FL and state laws and regs here are horrible — a total overreaction to the FL pill mill scandal of recent past. I’m amazed that any docs here are still willing to prescribe, given how hostile the environment is.

Renee

As a chronic pain sufferer with CRPS I have no choice but to take pain medication. If it wasn’t available I know I would commit suicide. This pain is horrific.

Cindy

A few days ago, I did call the D.C. offices of both my Senators and Congressional Rep. I had long talks with the person who answered the phone. They had never heard of the HHS Pain Task Force, and had no idea that our problems exist.

The people I spoke to all gave me as much time as I wanted while I explained the issues and my own history. One kept asking me to repeat the name of the Task Force so she could write it down correctly, and so at least she was actually paying attention and not just letting me go on w/ no intention of helping.

Especially given that they are all Republicans, I emphasized that not only are humanitarian issues involved, but also economic issues — economic harm to the country when people are forced off their meds and then stop working and go on disability — collecting SSDI instead of paying taxes.

Aside from my own story, I told 2 stories that I read here in recent months. One about a woman from NH who, thanks to opioids, was able to own and operate a small yarn shop, and then after losing access to her meds, was forced to close her shop and go in disability. The other was about the husband and wife who drove to a parking lot and the wife held her husband’s hand while he blew his brains out with a gun b/c he could no longer tolerate his pain since losing access to his meds.

Unfortunately, I did not get the names of the people I spoke to or ask about follow-up. My bad. But I’d wanted to call for so long and have been too miserable to do it, and so when I finally felt that I could muddle thru some calls, I did. Better than nothing.

I will call back in a few weeks, I hope, after reviewing the June 7 NPR, to try again.

Walter Strickland

Thank you Amy,the above is much appreciated by me and many others as well.I have emailed my rep in Texas several times and not one I have ever received a reply back from him.I have tried calling several times as well and always have to leave him a message.Again he never responds.What else can I do cto get thru to him to get a response?

Brett andree

I also have chronic pain broke my back twice have 8bad disks and 12pinched nerves I take 1/2a pill at night and 1/2in the morning have to sleep on the floor bed hurts too much been dealing with this 10 years I don’t want to get addicted to them that’s why I only take 1/2 but their has been days I need a full pill it’s hard to work but have no choice have a family I need to take care of

Gregorio Morales

Amy, I LOVE YOU! Thank GOD, we, OPIOIDS PRESCRIBED PATIENTS THEN AN ALLEGEDLY SHUT DOWN BY DEA, AN ABANDONED PATIENT!!! I SUFFER GREATLY DAILY WITH SEVERE CHRONIC PAIN DUE TO THE FAULTS OF OTHERS, MARINE CORPS POISON ME LEAD, MERCURY, PCE, TCE, BENZENE, VOC’s THEN AGENT ORANGE. VA IS FINALLY LISTENING BUT OWED MANY YEARS FOR SUFFERING. Mississippi state reps informed requesting MEDICAL MARIJUANA HELP….. TYVM. Peace Out

Hayden Hamby Jr.

I agree with Amy. A few factors though in effective advocating for self and millions of others. While in the attempt to relate my personal experience and millions of other pain management patients forced, to “live” a life without much meaning, I have been reprimanded. Reprimanded by two SBI agents and a “knock on my door” No kidding .I was taken by surprise. What was there purpose? In my opinion it was an attempt to make me stop advocating for…..pain management patients. They bring it down to a “personal” level like I….am the ONLY person, patient that is giving flack about destroying my physicians ability to manage “my” pain. NOT TRUE! I have always advocated for all pain management patients. Attacking “one”, is much more effective than the attempt to stop a larger voice. It has worked VERY well with attacking single practices and the goal is to pick us off one at a time to set an “example” if that is what it takes to enforce a dot/gov agenda. In the end I was honest and told them that I would not stop advocating because of the ignorance of those blessed to be “pain free”, and the “expert” opinions that stand to gain….financially at ANY cost, even human lives. What happened to conflict of interest? A.K. and a small band of profiteers are doing just fine while literally millions of Americans “pay the price”. I agree, advocate but, expect the unexpected!

Randy

When the pendulum swings back to the middle if the road. The state and federal government agencies Will consider changing the laws and recommended practices. They won’t listen even when the CDC has spoken. Saying that the number they provided were blown out of hand. Inaccurate and misinterpreted. Punish the criminal element, not pain patients who follow the rules.

Stacie Wagner

Thank you; all of this information is helpful. My biggest problem is that I can’t focus because of my pain. Trying to put into written words what this is like is both physically and emotionally painful. I hope this can be used to help fix this broken system. It is punishing those that are already in pain. I have no idea how many lives these “suggestions” have cost but I do know that the final numbers of CDC caused death by suicide are no where near finished.

Judy Dunn

Trump & his cohorts want nothing to do with us. The Democrats have no power as long as Mc Connell is still in charge. Trump is now going through any records he can find to get people off of Disability, claiming most are committing fraud and not disabled. They probably started this whole fake crisis just to get rid of the disabled, just like Hitler did with the Jews.

Thomas Wayne Kidd

My state Representative and Senator ignored me when I tried to contact them. Let’s face the truth, these people just don’t give a damn. This fake prescription drug crisis isn’t our fault. It was created by people in our uncaring government to take more control of our lives. The CDC made a statement saying that their recommendations were misinterpreted and misused, and the suffering continues. The Americans with Disability Act has been and continues to the violated by those who are supposed to be managing chronic pain patients and many like myself who has been in this treatment for 30+ years with good records of going by the rules. Still, to many we are nothing but criminals and dope addicts. When we people wake up to the truth that this attack on us was deliberate? When our government both State and Federal turns a deft ear and refuses to see what’s going on we are in deep trouble. I have sent several comments to the Trump Campaign and have never received any response. All I get is a plea for donations. The Democrat Candidates have said nothing about these abuses and I won’t hold my breath until they do. Oboma was the the one who started this wicked hellish mess and the Republicans are not much better especially when it comes to what has happened to, as I read in your commentary “100 million” chronic pain patients, other have said “50 million.” People continue to commit suicide and die because of lack of care. We must be truthful about what is taking place and stop the BS. I never dreamed that when I actually need help at my local ER, that I would be treated as a dope addict, criminal, and worst of all have city police and Sheriff deputies there following the ER providers around, and mocking me. I wonder if others have had this happen to them? This should be a wake up to people that we cannot trust government! But as the election comes in November of 2020 people will once again got to the poles thinking those whom they help elect will somehow care.

Terri James

I for one have written these people as well as my president more times than I care to tell. The response, when I get one is always the same. They know there’s an issue but they can’t do anything about it. They state the statistics, why it happened and how they stand on it. The problem is; they do stand on it and don’t seem willing to do anything about it. Not long ago I was reading something that Dr. Richard Lawhern had written. I didn’t comment that day although I thought to myself, wouldn’t it be wonderful if we could get him along with a few others that write stories for the National Pain Report on a television show like 60 minutes. If we could get our tireless awesome veteran Robert Rose, Cynthia, Liza as well as Ellen on there at the same time it would be quite the show to set America on its ear. Wouldn’t it be refreshing for everyone to hear the truth instead of the lies our government continues to spread?? Just food for thought.

FST

We’ve been asked to organize, to fight, to carry the banner on behalf of us all. I get it; I got it. I hate to be a quitter, but the fight in me is gone. It went with the last time my pain med was decreased, and my body rebelled bigtime, so I came up slightly short.

I was kicked out.

After 10 years in pain management, I had nowhere to go. So I called up the local Suboxone clinic to help with withdrawal, and then done. I dread the time when they tell me I’m over it and free to go. Pain has already seeped back; then trickled, now flooding my every moment with an intensity I had forgotten with meds to cover now gone.

Carry on, my friends. I cannot go on.

On DoctorsofCourage.org, we are heading a communication campaign to federal legislators and media (and anyone else decided by the activists involved on the weekly webinar planning session). The propaganda is rampant, and that is what we have to fight. Even medical professionals are being taught that “opioids are addictive”. Yes, they satisfy the anxiety of luetism, but you have to first become luetic which is avoidable and treatable once you leave the mindset of conventional medicine that doesn’t really heal anything, but maintains it to sell pills. So educating everyone is paramount. Join the communication campaign.

Jody Hoffman

We just had an appointment with our new doctor in Minnesota and the entire appointment with him consisted of why he was forced to taper my wife down to 50mme of pain meds despite the fact that her pain isn’t well managed now, he refused to change the medication to another that will work better and still keep her at the 50mme. She is having knee replacement surgery in 6 months but they are going to continue to taper her off every 2 weeks to nothing. This is despite the CDC telling them to halt the forced taper. It’s not ever going to end

We all should know Amy is right. The proof that she’s right, is that Andrew Kolodny got there first and lied to all these people to get them to do his insurance company a favor.

Had we been there, he would never have gotten away with it. We would have had too many facts to expose his lies.

We can thank Dick Nixon for creating this mess. States depend on handouts of DEA money so medical boards accommodate the DEA by attacking doctors and cutting off patients. Nixon undermined Democracy itself. Our Constitution left most governing to the States, because it’s easier for the people to visit their nearby state officials than it is to travel to DC and have an impact there. Nixon turned that relationship upside down by paying States to do his dirty work for him.

What will happen to the DEA’s power when state officials refuse to accept their blood money? Most of the trouble they cause, will stop!

The only way to do that is to educate your state legislators and officials.

Simply put, Amy has it right.

Chronic Pain Aware

Easy to say when you are not in pain and being denied treatment tied to a couch crying driving 1590 miles a month for meds spending every last time dime and energy to survive sorry Amy but if you have the strength and time please do it more for all

Denabeana

My only concern with these suggestions, “ask your pain doctor for other patients in your area”. To most of them, not all, it will look like we are seeking patients out to divert medication either direction. The doctors are not following their Hippocratic Oath anymore, patient care has come down to protecting their Licences and protecting their good names. All these involved need to realize this is a Heroin and Fentanyl “Crisis”. Most of these overdoses happen due to heroin laced with fentanyl, stronger heroin, taking RX with illegal substances or Drug to Drug interactions; i.e. benzodiazepines with opioid painkillers.

In response to Robert S. you talk about when will our officials stop accepting this blood money and the answer is never. As long as they have dollars coming in they will keep an issue alive. So, yes, I agree, we need to get “Big Pharma” behind US. I mean they also have a vested interest in helping our fight, as they continue to lose huge profits due to this so called “CRISIS”. Again, look at the real statistics and you can see what I mentioned above, is the real truth. They have created this mess and they continue to blame everyone else and deny the truth. Suicide rates have doubled and now they are pushing patients TO heroin as the opioids manufactured decreases. So now they are perpetuating a new problem…

Heather Ford

This is helpful advice. I’m tired of feeling the lives of those with addiction are more important than the lives of those of us suffering chronic pain. I’m looking up my representatives then I’ll have to find the number of chronic pain patients in NC. Thank you

SHEILA GAIL GOMEZ

I have a representative here in the city that I have his name is representative Dowling when it be I’m good idea to talk to him about my problem I cannot get my migraine medicine to save my life one doctor wanted to give me medication that causes seizures and it was a neurologist and my pain doctor won’t give it to me because he wanted me to see the neurologist I have been on this medication since 1979 due to extreme migraines I also have my medical records from the United States Air Force to prove and they have it written in there where I have taken this medicine up until six years ago my PCP doctor wrote it for me then I had to be sent to a pain doctor all because of the DEA and these kids taking over doses of opioids I’m no dummy I’m smart about my medication I was taught how to take it way back when 1979 and I followed the steps implicitly I have never overdosed are taking my medicine any sooner that’s not the only opioid I’m on I am on Norco because I cannot take Nan says or anti-inflammatory drugs for my osteoporosis osteoarthritis degenerative disc disease and I have Crohn’s disease which causes a great deal of pain I have also RSD and fibromyalgia which and RSD doctor put me on the door gesic patch 15 years ago it works but when it starts to wear off the pain is unbearable but I live with it how do I get my pain medicine for my migraines I have been eating Tylenol till it’s coming out of my ears and does nothing there are many many nights and days I don’t sleep I don’t eat and then my Crohn’s acts up because I need to eat and then I’m in the bathroom these people do not understand what we go through even though I am 68 years old they worry about respiratory distress or sleep apnea and I have neither I was taught how to take my medication and I’ve been doing it that way ever since 1979 so I have to suffer with migraines anywhere from five to seven days and then I cannot do nothing I can’t take care of my home my dogs my yard my home my husband passed away two