Chronic Pain and the Other Side of the “Opioid Epidemic” – Patient Advocacy 101

Chronic Pain and the Other Side of the “Opioid Epidemic” – Patient Advocacy 101

All of us who experience chronic pain are seeing first hand what is happening with the opioid epidemic and specifically, from the fallout of the 2016 CDC Prescribing Guidelines (https://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm): the abhorrent scrutiny patients and healthcare providers are enduring, forced tapering off opioids and most alarming, suicides. But what can one person do about it? Actually, a lot! It’s easier than you think to become a patient advocate and I’m here to walk you through my recent meeting with a U.S. Representative’s team.

Melissa Wardlaw

After reading about Patient Advocate Cindy Steinburg testifying on Congress, my own mother was motivated to write her Congresswoman (I had no prior knowledge of her doing this by the way). Her letter was brief but very passionate. First, she complimented the Congresswoman on her efforts; second, she briefly told her the (continuing) saga of my long and horrific journey through chronic illness and pain. Finally, she concluded by asking for the Congresswoman to keep chronic pain patients and “the other side” in mind when it comes to issues involving the “opioid epidemic.” Her letter was thoughtful and engaging, and laid out the facts in a respectful and concise way. She was very complimentary and never used an angry tone or “blamed” the government for hurting pain patients. She merely brought the issue to the Congresswoman’s attention.

To our shock and delight, an assistant to the Congresswoman in D.C. responded and asked if my mom and I would like to meet in order to discuss the issues further! A meeting was then scheduled with the District Director and team of the Congresswoman.

While I am an Advocate for myself and others with chronic illnesses and pain, I have not been too vocal in the opioid epidemic. In my role as a peer support counselor and advocate, I speak to patients on a consistent basis who, for one reason or another, have had issues with being prescribed opioids for their pain. But neither my mom nor I were very familiar with the specifics of the opioid epidemic and fallout from the CDC Guidelines. So the race was on to gather statistics and issues affecting chronic pain patients. We went to work gathering research and working on an informational “takeaway” document to handout in our meeting.

The Meeting

As we walked into the Congresswoman’s office, we were nervous! Of course I had to bring various modalities for my comfort as we pain patients often do. We got inside and immediately saw the seal for the U.S. House of Representatives! It was very exciting and surreal.

Our meeting went very well. We had a main takeaway document for them which we also used as a guideline for our discussion. We also gave them a few handouts that corresponded to certain items mentioned in the document. (Please see the main takeaway document and links to the handouts below). Our meeting lasted over an hour and they were very receptive. They admitted they knew nothing of the issue from the “other side” and were very interested to know more. All they hear about in the media is overdose deaths and how opioids are horrible and addicting. It never ceases to amaze me how grossly uneducated people are in this country (and in particular the government) and it’s up to us to change that! If we don’t do it, who will?

The meeting was very conversational; we kept it professional, told them my (and my mom as my caregiver) story of chronic illness and pain and simply educated them on the facts without getting angry or emotional.

Interestingly enough, one of the team members experiences debilitating migraines where she even has to miss work on occasion! She also isn’t allowed opioids for her chronic pain and said nothing helps – so like millions of others, she basically has to grin and bear it, effectively making her part of the huge burden cost of pain on society (which is almost 700 billion dollars annually).

The mere fact that she experiences chronic pain allowed us to develop a rapport. At least she understands and has a personal stake in the plight of chronic pain patients. I told her about some of the therapies I use for my migraines and even referred her to my doctor! You never know how many people in the government have chronic pain themselves or have a friend or family member with chronic pain.

Considering there are approximately 100 million of us who suffer from some form of chronic pain in America, and 20% of those deal with intractable or high-impact pain, it is inevitable that our representatives in Congress will know someone who suffers. The bottom line is that we are 100 million potential voters – so they should be interested in and listen to what we have to say, right?!

To my amazement, they mentioned that the Congresswoman might want to attend one of the support/empowerment group meetings I run to gain additional insight from patients! She’s the one who brought it up! Of course I was elated and told her we would love to have her and her team attend.

The meeting concluded with the team thanking us for coming in to speak with them and for the invaluable education. Of course we thanked them as well and told them we would be sending an electronic copy of the handouts as well as additional resources on the topic. We felt good and proud about what we had accomplished – we have now educated an elected official (and her team) who has the power to make real lasting changes in this country – and so can you!

ADVOCACY RESOURCES

State by state legislative contacts:

https://www.ciaag.net/legislative-contacts.html

Takeaway Document given to the team:

“Discussion – Issues Affecting Chronic Pain Patients” (April 22nd, 2019)

Congresswoman Bath Discusssion Takeaway Document – April 2019 – Modified Version for NPR Article

Links to handouts mentioned in document:

HP3 Letter (March 6th, 2019)

https://healthprofessionalsforpatientsinpain.org/

HP3 Press Release and CDC Response Letter (April 10th, 2019)

https://healthprofessionalsforpatientsinpain.org/press-release

https://img1.wsimg.com/blobby/go/3d70257f-a143-4a5b-b9df-f7d265df0d3d/downloads/Alford%20Final%20.pdf?ver=1554957603807

U.S. Pain Foundation Position Statement – “Balancing Pain Management and Opioid Reform”

https://uspainfoundation.org/wp-content/uploads/2018/02/Balanced-access-to-pain-management.pdf

U.S. Pain Foundation – Pain Management Best Practices Interagency Task Force (Draft) Report

https://uspainfoundation.org/advocacy/inter-agency-task-force-toolkit/

Links to additional resources:

YouTube video from  LasVegas NOW – KLAS-TV8 “Our Pain. The Other Side of Opioids”

https://www.youtube.com/watch?v=FzY2tIU83II&feature=youtu.be

Article from The New York Times – “Good News:  Opioid Prescribing Fell. The Bad?  Pain Patients Suffer, Doctors Say.” (March 6th, 2019)

https://www.nytimes.com/2019/03/06/health/opioids-pain-cdc-guidelines.html

Article from The Washington Post – “The Problems with One-Size-Fits-All Laws on Opioid Prescriptions” (April 4th, 2019)

https://www.washingtonpost.com/outlook/2019/04/04/problems-with-one-size-fits-all-laws-opioid-prescriptions/?utm_term=.daf27efa7563

Article from Reason magazine – “America’s War on Pain Pills is Killing Addicts and Leaving Patients in Agony” (April 2019)

https://reason.com/2018/03/08/americas-war-on-pain-pills-is/

Authored by: Melissa Wardlaw

Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online support/empowerment groups for CRPS/RSD and chronic illnesses/pain in the Metro Atlanta area. A “fur mom” to two cats, Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain.

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Scott Haight

I am contacting you because I was released from a pain management clinic over 7 months ago, and I have been unable to find anyone to treat me since then. I have seen at least 8 different clinicians and they all ignored me, basically me feel like I was making it up, then they did not prescribe any analgesic medication. Most of you will probably say the same thing as most others, but I am desperate enough to try. I have been sending letters out to hundreds of different organizations, advocacy groups, lawyers, you name it.. Nobody seems to know how to help. Honestly, after suffering and being tortured for 7+ months, I am ready to give up and die. Here is the basic “plea for help” letter I have been sending out:
My name is Scott Stewart Haight, chronic pain patients have legal rights to pain management, right? . Then tell me why I am unable to get any care at all. I have had Complex Chronic Pain, sciatica, arthritis, +more for 20+ years now. I was recently discharged from a Louisville pain clinic with no warning, no explanation or scripts to help me function. Your medical records are a legal document; they are a comprehensive and definitive history of treatment, and alteration in any way is a crime. Healthcare providers receive rigid instructions about adding or removing information to or from your record. Violating those protocols results in criminal liability.
The clinic was negligent in my care by knowingly allowing me to run out of pain medication, I was taking for 20+ years. This is LIFE THREATENING!!!. I have experienced several Grand Mal seizures and have stopped breathing, I could have died. I have ER records of seizures too. He knowingly put my life in danger by not prescribing medication I was on for 20 years, they also did not give me any warning. They are lucky there is no wrongful death lawsuit here, he pushed it very close.

Trish

Jill, you’re so right. While people with well-documented painful medical conditions are being deprived of the most reliable pain relied known to humanity, and our government – as well as state medical, nursing and pharmacy boards, and medical conglomerates (nonprofit and for profit) enact increasingly harsh restrictions, our government pays for free needles for use injecting illegally purchased drugs. I’m sure nobody is telling “needle exchange” clients they need to limit their use to 90 mg/day!

I’m hoping to get visibility for pain patients with The Blue Balloon Campaign. I conceived it as a way for all pain patients – even the housebound – to be able to participate. The idea is to launch balloons – our first day of action is Wed May 15th, a midweek day symbolizing opiates making possible ordinary life activities like work, family events, volunteering, travel, etc. Those who are mobile can release, or distribute, balloons from public places, and distribute flyers to explain our situation to the public. Those who are housebound can release balloons from home. All the balloons rise into the same sky. Photos and videos of balloon events can be posted on the internet – and the collection of these will grow over time.

After May, events will be in the middle of each month.

Jill Spencer

I have pain,from being hit by a car as a pedestrian. What makes me frustrated is the addicts can get help anwhere. But I got to jump through hoops because my pain is intermittant. I get spine shots and trigger point shots and it lasts around a year and a half before I need help again. My doc told me it is degenerative. I have diabeties and the shots undermine the management of my diabeties. My pain is coming back and if I cant get shots again Im going to be in hell from the pain.
I thought of this problem recently, if addicts had the guts or were forced to report to the cops every name and contact they knew when they were addicted,every dealer they bought from that they knew ..I think the drug cartels would be stopped in a matter of weeks. Nobody notices the addicts are to blame for the cartels that make money off of them. If addicts had the courage to tell police what they know police would have leads to get the monsters running the drugs off the street and out of business. But addicts they dont confess what they know to the cops. They go to thier meetings tell war stories and cry poor widdle me . They’re cowards who really dont want to stop the cartels. I think maybe cause they want to abuse drugs no matter how much help they get and don’t really care who gets hurt while they chase rhier stupid highs. They must realize thier behavior hurts us who hurt everyday.

I think in order for an addict to recieve any help or treatment they must be forced to tell who thier suppliers are or be left to get off the drugs by themself. They are who keep the drug cartels operating,the least they could do is tell cops who they got drugs from as part of the cost of recovery.

Ali

Yes Susan. She is just now understanding of the impact.
Such an educated woman but very uneducated to the guidelines she signs that could cause suicide.
To admitt that one is suffering and then admitted they knew nothing about the otherside. Who signs a guideline only educating themselves to half of the citizens this will affect.
As a retired RN seen to many politicians listen, agree, leave, and never see again. Patients for the last two decades were promised pain management for quality of life, pain free, and physician’s will help us. I know this for a fact I was an RN who took classes on this concept of giving the patient with pain dignity, prescribed medical pain med, and questioning patient on pain scale to evaluate level of pain. Now 360degree turnaround immediately enforced leaving patients with no pain med, no physician, being bullied in medical community, people critical of there chronic pain, and now face profound pain, fear, anxiety, depression, and suicide.
If I had done this to a patient as an RN I would have been in prison had they committed suicide.
This is severely lacking duediligence not to look at all the citizens in detail on these critical
Guidelines signed with no forethought of consquences.

F.S.T.

Cheryl Marosi, RN, I feel your plain and I live your pain every day, as I’m a retired RN too. I somehow know, feel, understand, or empathize with everyone else’s here, too. We are a mass of human beings who hurt. Yet we’re shipped off to various and sundry “pain clinics” that, suffice it to say, many are joke-worthy if it hadn’t been so damn serious.

I’m telling my pain clinic goodbye this week. We’ve had nothing more than a jailer/inmate relationship. Pee in the cup. Bring your meds and they count every one. They even call and demand pill counts at all hours of any day in between monthly visits. That’s an hour round-trip for the pharmacy to “officially” count pills. Last year when I had shoulder surgery, the pain clinic doc refused to consult with my surgeon, at my surgeon’s request. (To my surgeon’s credit, the anesthesiologist did a complete shoulder nerve block where I had no pain for about 5 days post-op!)

A month ago, I prayed that God give me the strength to face the inevitable withdrawal I knew was coming after 10 continuous years of being on Oxycodone. I told Him I couldn’t do it; that all my faith and trust was in Him. He answered my prayer. I had one little bout with restless legs one night, but that was all.

I start next week at the pain clinic close to my hometown. I know I will need some pain relief on an ongoing basis; maybe it’s time to start a different opioid, but I’ll forever fight for the right to have my pain addressed.

Ali

Your experience was awesome and you were very nice to the politicians.
I am a chronic pain patient and a retired RN. In those years I have seen and experienced both positive and negative guidelines put in place with and without duediligence.
These guidelines have already cost lives to suicide yet not one positive voice from the CDC,FDA, etc agencies has stepped forward to stop these deaths by genocide suicide. How many suicides, chronic pain patients refused by physician’s, and daily living with profound depression does it take for there compassion? One death is to many but many deaths is genocide by suicide.
The ones you spoke to are just now realizing the magnitude of the guidelines and still continue on the path to enforce guidelines that we’re put in place with no duediligence or forethought of there consquences. This is medical negligence. If they had really listened not one second more would this travisty be allowed to continue. One death and another and another yet no one stops this road of tragedy.
I truly believe you have touched there lives but politically it hasn’t moved one guideline to save a
life. Would you continue one second when a life of pain and suicide was at stake? Well these politicians continued and didn’t even consider the life that is now gone and a family with unbearable sorrow.
Politically we chronic pain patients are soft targets to control because for decades they can’t control the cartels and drug dealers.
I truly thank you for your kindness but no voice has been heard from the political arena to save those of us who followed all the guidelines and rules.

Patricia

Thank you for your support of all of us enduring this nightmare.
Is there any kind of letter covering these concerns that could be used to send to the government’s officials in all states??
I don’t know we’re to begin but would love to contact mine but feel I lack the knowledge.

susan

Hooray!!! Finally a great article on pain issues. We all aren’t crazy. Some of the folks who leave a comment seem to be very uneducated. Thank-you for your article.

dave

kudos to the Wardlaws for their courage and initative. Maybe their is a place for them in the next avengers moview of game of thrones.
I am surprised how cordial lawmakers seem to be with constituents regarding pain care issues as they have failed to extend their cordiality into new bills establishing the rights of people in pain to much different and better treatment and much greater freedom to decide their own care.
Perhaps lawmakers wish to appear sympathetic to people in pain-thats being diplomatic. But to continue to allow oppressive and cruel laws and regulations and to fail to create an energetic bill of rights for people in pain which would guarantee them a place as respected equals amongst insurers, providers and government- is not something lawmakers are caring enough and mature enough to do.
Our lawmakers are diseased morally politically, socially and intellectually. This is what Arendt called the banality of eviland they are inurred to their evil- just as the author of Bracve New World, Orwell wrote. Or further back as thomas Paine wrote. They arent Albert Schweitzers, MLK’s, Mother Teresa of John F Kennedys. Theyre captured by technocapitalism and social darwinism. They see people in pain as second class citizens who should be satisfied that government even recognizes their right to free speech. They attempt to justify and buttress their beliefs with experts in academia and organizations who are only too willing to engage in quid pro quo with govt to advance their status or financial well being. Its a tragic farce from the perspective of people in pain- but for government and their friends in industry- theyre profiting greatly off the cruel designs of govt and the failure to do good for people in pain.
Its time to see government and the iron triangle of insurers, providers and academia as the moral laazy self serving bums that they are and demand real reforms and not tokens of concern.

Mitchell Murphy

Melissa,
Thank you for the info. Being a chronic pain patient, you are correct in your approach. A grass roots movement by the people who depend on these medications to have any quality of life is what the politicians, law enforcement, law makers and any state or Federal agencies need to hear and see our faces. Thank you again for the links. Your efforts are much appreciated.

Terri James

Thank you for your bravery Melissa as well as letting us know how it went. There’s so many of us that do what we can in our own way. Some people have done what they could by calling or writing our government officials. Some make it to the don’t punish pain rallies. One man took this to court in Greeneville Tennessee. Others comment on the National Pain Report, filling out questionnaires Etc. We don’t know who reads our stories and comments, so someones story or comment just might make a difference. There are others that get the word out by doing things they think might be trivial, such as going to the YMCA, showing folks they are in pain but are striving to do what they can anyway. There are others that talk to people such as their friends and family that don’t know what they’re going through. Some take it to Facebook and get the word out there. There are those who simply stay at home, hoping for the best and talking to God, asking others to please pray for this horrible Injustice. I myself like the latter one best, though all of these are so very, very important! My point is, all of us in one way or another can make a difference and we don’t know just who or when that’s going to be. We can look at Christopher Columbus, Thomas Edison, Amelia Earhart, Martin Luther King, just to name a few. One never knows when one can change the course of history. The main thing is that we all continue to try in one shape, form or fashion. I want to take a moment to thank Ed Coghlan, Liza who literally puts our feelings into words, Robert Rose, Thomas W. Kidd, Ellen for educating us on EDS, the beautiful Cynthia with a heart that doesn’t stop, Richard Lawhern and Terry Lewis just to name a few. We outnumber the DEA by the thousands. God can and will move mountains with faith the size of a mustard seed. My prayer today is that God will bless you all and help us all to keep on keeping on. Please don’t beat yourself up, thinking you’re doing or have done nothing.💞

More Doctors need join together and help the fight.I seen a show where doctors are getting burned out cause of too much administrative work-red tape stuff and that many are committing suicide too.
When they put in this new health stuff(Obama care or whatever it is called) not only did all my medical stuff go up I have seen PA’s have stepped in and don’t see doctors as much.I don’t feel the doctor patient relationship is the same.I feel that the quality of my health care went down.Once you say you are a chronic pain person it really seems that I am treated way different.I really have been blown away by it seems like they don’t listen or have their minds made up that your motives of you being there are way different.Example is real bad ear infections or respiratory infection and some really didn’t check me out and what I was there for got worse after days and went I went back in and seen a regular doctor I got the treatment I knew I need with antibiotics.There is some that I have told them that I have pain meds. and they say I can’t give you pain meds. that you are on a contract I see.I already said I have some.I have seen this pain clinic doctor for some time and find out they don’t know nothing about me that they haven’t even looked into my records and know nothing about me.All they cared about was to get me off that much more meds.

Thomas Wayne Kidd

I just had my doctor increase my Opioit medicine by 5 mg but.it is not enough. Talk is not getting us anywhere. Don’t be afraid to tell your doctor that they have violated about every right we have under the Americans with Disabilities Act. And get a copy of the Patients Bill of Rights and show them to your doctor. The CDC has just recently stated that many doctors have taken their recommendations to far and did many things which was never intended. Remind them of these things. We have to stand up because our elected officials are not going to.

Thomas Wayne Kidd

I am glad that you were able to meet with your representative. I, unfortunately was ignored. Thank you for your article.

Alex salvi on The Daily Ledger one America news just said people that are in pain that have a prescription and when that prescription Runs Out and they can’t get a refill they run to the streets and get fentanyl. His suggestion is for other people to come into your life and give you support because you are addicted to opiates. He says please tweet him or email him Alex salvi news. So talking about getting a punch and another kick in the face this young man just did it. They continue to bash people who are in chronic pain as addicts. This 25 year old looking man is a moron because he doesn’t know that he could be a person that will end up being in chronic pain. Sometimes life has a way of flipping the script. Let’s all tweet Alex salvi and let him know how we feel. This aired on one American News April 28th at 1 a.m.

Thank you Melissa Wardlaw for your courage to fight. But I just heard on the news that Medicare will be cut by 25% to those who are on it because by the year 2035 there may not be any social security for anyone because at this point is becoming unattainable. So there is even a bigger fight for the people who have disabilities and then those unable to hold a job & rely on Social Security or those like my spouse in a few years will turn 65 & there may not be social security for him even though he has worked & put into the system. This will be a devastating blow to my family bc, I’m on Social Security even though it’s a very small amount but need the insurance. Now I wonder if funding the Border the money could be better spent on the citizens that live here. And those that come over they will not get nothing so they have no reason to come. And I hate to be so mean , we have work so hard & paid into the system that reliability will no longer be there that we both paid into. I had to take it early due to disability but I feel so sorry for my husband who has work so many long hours & overtime not to have his Social Security that he worked for. So now we have the anwers to why opiates are lowered & none at all. Why pot is so hot bc its taxable.

Suffering in pain

Pain patient advocate groups need to align and unite. On May 22, 2019 Don’t Punish Pain Rallies will be held in cities across the United States. I encourage all people to attend a rally nearest to them or host one in your community to be seen and heard as one voice united for your right to humane treatment. Spread the word. Check at the dontpunishpainrally.com for city list. This is a grassroots volunteer effort. Remember, there strength in numbers. Together, let’s tell the government what we need.

Susan

Your congresswoman’s ignorance is horrifying. How many laws/guidelines have been written, supported, or passed without any knowledge or thought given to the “other side”? I shudder to think…

Julia Heath

It is very elating (well, nerve – racking initially, then elating) the first time you get to meet with a leader or lawmaker. But it is worth the experience – mainly because you find out that, indeed, you can do it! Being professional and respectful of the position of the person with whom you are meeting is crucial. Staying on topic is very important, so have something written or typed out that gives you a guideline of the order in which you would like to present your ideas. Always lead with your most important point – you may or may not have opportunity to discuss everything you would like. It’s ok to have some emotions about what is happening – people are suffering and dying needlessly. But if emotions keep words from being the focus, then have someone with you who can take over the discussion while you gather yourself. In fact, don’t go into a meeting alone – if at all possible, have a knowledgeable companion or 2 with you. These have been my experiences that have helped me have successful meetings. Be brave! Be bold! You can do it.

ElizabethR

THANK YOU, Ms. Wardlaw! This is the most comprehensive and useful set of action directions I have seen since joining this group about 8 months ago. I intend to utilize the information in your post and supporting documentation to re-contact my state and federal officials.

I live with long term incurable pain and am “fur mom” to two cats. I also live in fear of losing the mild opiate I have been taking for many years. I’m 82 and retired after 57 years in the workforce. I deeply resent being shamed and treated like a potential criminal just because my body, although damaged, has survived longer than its projected shelf life.

And the most important information to give legislators is: 1. The REAL Cause of Drug Abuse and 2. Using Law Illegally Against Doctors.

We have to get the country to understand that drugs are not the cause of addiction and that the Controlled Substance Act is being used against doctors against the intent of congress and multiple SC decisions, but they continue because no one spreads this information. It has been available now for 2 years. Meanwhile, folks are chasing the proverbial rabbit over the CDC guidelines. Good luck with that. When you have eyes to see and ears to hear, the truth will set you free.

Robert

All the media and government folks just say OMG another overdose because of the ” opioid epidemic” After hydocodone was rescheduled I was told I had to go to a “Pain Clinic. My Pa referred me, she said, to the best one in Amarillo Tx. I was never seen by the “owner” Dr. of this clinic but 2 times in 11 months. That was for Steroid injections. The Pa I always saw would only give me Tramadol…I just as well have bought TicTacs .. It did nothing for me… So I left that Clinic.. About 6 months ago, this after relating my chronic and painful issues, and having test after test, from the Md. i was seeing. I researched Pain clinics here and there are 3. I tried all 3 and all they wanted to do is steroid injections in my back spine.. I can only get Tylenol #3 every 4 months, because i am only on Medicare because I have torn muscles or ?. This is in both shoulders. I could not raise my arms above mid chest prior to this clinic.The surgeon said I was not a candidate for surgery and he was doubtful it would help. He said the only option was steroid injections.. Luckily the Pa the gives that gives the injections lets me have Tylenol #3. Nothing more than that no hydrocodone etc.This “Opioid Epidemic” is because of people who are cut off or tapered. My graduating resident from the local student clinic told me( and he on only prescribed Tylenol # 3, three times over several years only because of me being sent to the ER and being in intensive care for a week and in the hospital for 2 months +. This B.S. must change… !!!!!!!!!!!!

Jeffrey Joseph Sharp

Thank you all for your efforts. As, a lifelong chronic pain patient this issue is deadly serious. I just started a few month’s ago by reaching out to my politicians by make phone calls, writing Emails and letters. I do think it’s crucial that we be as professional and real when we do these thing’s. The more of us who take these actions, the sooner that change will start to become a reality. God Bless all of you. Again, Thank you.

Deanne Daniell

One group of people who could advocate for pain patients has not been “tapped”, to my knowledge. Many pain patients rely on HOME HEALTHCARE AIDES …. there are individuals who do this work, but it would probably be more effective to reach out to those who work for agencies like HOME INSTEAD, KINDRED AT HOME, RIGHT AT HOME, etc.
I mentioned this to an aide who had stayed with my mother during her last few months, and who has remained a friend of mine since. She said that her former co-workers (she is now retired) would be a wonderful resource for this topic!

Gary Raymond

My U.S. CongressMEN, Senator Tim Kaine and Senator John Warner, twice sent me uncaring, insensitive, canned letters from their computers. I was a junkie and an enemy to the program. Both directed me to rehabilitation services because I brought up the subject. My Virginia General Assembly delegate and senator did not bother to reply. I am going to remember each of these monsters at the next election. We must remove politics from medicine. Lawyers should not tell doctors what to do and doctors should not tell lawyers what to do.

Rebecca Hollingsworth

Lately, more and more news outlets are presenting the “other side” of the opiod “epidemic”. The other day on the Fox News Network I saw a short piece about chronic pain patients and how we are the ” unintended consequences ” of this crisis. Fortunately, the anchor spoke with what appeared to be compassion for pain patients who have had their medications denied or severely tapered. The word is finally getting out thanks to everyone who has written or spoken about this ordeal. I personally spoke to my U.S. senator at a town hall 2 months ago and pled our case. It seems that all of our efforts are starting to be recognized. Everyone who is continuing this fight has my gratitude Every little bit does help. If you dont know how to contact your representatives then Google it! This is just the beginning and it’s going to take all of us to fight this injustice, and right this wrong. You can make a difference.

YCMartin

I finally found an article that pointed to what I had suspected: opoid deaths are caused by heroin and fentnyl, both black market items. I’m sure there are a few people who die from intentional or accidental overdoses but the lion share is caused by illegal opiates. A hidden fact to promote an agenda of harming pain patients! I haven’t cleaned the “why”, still looking

Stacie Wagner

Dear Melissa Wardlaw, Thank you for your post on chronic pain. I do want to ask if you thought to include anything on the nature of some individuals having a higher tolerance to or a higher metabolism of medication. I do have a higher rate of metabolism of medication because of the CYP2D6 Gene which about 1% to 7% of white people carry. I have done better with time release medications however I do seem to have a higher tolerance as well as the higher metabolism of medication. I was curious about how much that was or wasn’t addressed or if it has ever come up. On another note I do know that Massachusetts has some documentation on overdose deaths. What I read seemed to align with the majority of overdose occurring on illegal drugs even though they have one of the lowest prescribing rates in the nation they have seen a sharp increase in deaths. I’m including the site address: https://www.drugabuse.gov/opioid-summaries-by-state/massachusetts-opioid-summary

I hope that this research helps.
I have contacted all of my states representation as far as local, state and federal elected officials and I encourage everyone to do the same. Again thank you and your voice is appreciated.

Cheryl Marosi

I worked for years as an RN. Sadly, in 1996 i was hit and run by a driver. I shall spare the details of the accident. The injuries left me with Syringomyelia, cervical disc herniation, a crushed tailbone, now spinal stenosis. Recently, at the age of 66, I was diagnosed with Polymyalgia Rheumatica, fibromyalgia and osteoporosis. i am a diabetic so taking prednisone only slaps the blood sugars harder. The pain from the above often makes me wish I didnt have to see another day. But i have a responsibility to care for my grandson who is 2.5 yrs old. My pcp decided due to the excruciating pain I would benefit from a low dose hydrocodone. My kidneys arent well enough for high doses of NSAIDS any longer. Two low doses of hydrocodone. 1 in the morning and one at night helped me to function. I lightly say function because I was allowed to walk though with a poor gait…and even prepare dinner. Hardly an addict at 66 yrs old. Suddenly, the new so-called opiod crisis hit and my PCP explained to me that the medication he had prescribed to me based on his experience as an MD…would have to be prescribed by a Pain Clinic. He clearly told me the new laws have made him essentially have no rights to prescribe what he feels is best for his patients. He apologized. My physician fearful of the law? In all my years of practicing as a RN, I have never seen nor heard such fear tactics taking hold of practicing physicians. I am now in a pain clinic. I sign off on crazy questionaires, feel like I am in some addict clinic specialized in dealing with people who are addicts, not patients. Needless to say, i am appalled and feel like I am being isolated and treated like a person who has the plague. Thus, o, i have been made to feel ashamed of what has become of my body with these disorders. Never in my life , after all of the people I have cared for did I ever think if I were to suffer from debillitating illnesses would I have to want to die in pain than to feel berated and ashamed

C. L

Melissa, thank you for your voice on this issue.

Glen

To much talk and no action. Abused animals get rescued and people do not. There should be Emergency “prescribers” to contact. All doctors will say the same thing, “go to your primary care provider.” You can get a second opinion for anything but pain! No one can tell the difference in addicts or pain sufferers. A living addict can be treated, a drug free dead one cannot.