How a Senator’s Office Listened to Chronic Pain Advocates

How a Senator’s Office Listened to Chronic Pain Advocates

By Rachel Beals.

Recently, Dr. Terri Lewis wrote a provocative piece explaining to the chronic pain community how to make change in governmental policy. Here’s an example of how one Indiana woman shared her story.

I’m a 41 year old chronic pain patient who has suffered for sixteen years with severe lower back and sciatic pain due to a medical procedure which went terribly wrong causing a massive infection and leaving me in a constant state of pain. I’m also a breast cancer patient who has undergone chemo therapy and have arthritis in my hips.

Rachel Beals

Recently, I started up a Twitter group containing around seventy other chronic pain patients and doctors who would like nothing more than to make a change in regards to pain medication and all of our rights to receive or provide treatment. Because we are an advocacy group, I continually look for opportunities to have our voices heard, especially within the political arena.

I found one. I wrote my personal story to Senator Joe Donnelly and received a very positive response. I looked over a website that gives anyone the opportunity to ask for a meeting concerning a particular issue in their state. I navigated through the site and requested a meeting towards the end of November. After I had submitted the details of this request, I logged into my email account and saw that within 5 minutes they had accepted my request and were more than happy to give me an hour’s worth of time on November 30th.

I was scheduled to meet with Donnelly’s State Deputy Director, Brandon Herget.

I asked my colleague in Indiana, Ms. Stacey Fields, to join me and together we brought lots of information, including statistics, other important data, and personal stories which relayed the agony of chronic pain.

We covered the sheer terror the DEA has instilled in almost every type of doctor within the medical world. We asked why this was the case and how we could resolve it. He responded by letting us know that this was NOT the true intention of the DEA. Only clinics which were considered to be “pill mills” were in the sights of any federal organization.

We quickly explained our own problems with our own doctors prescribing pain medication and I noticed as he jotted down notes and even asked for specific names. I told him of how my own oncologist stated he wasn’t going to jail for my pain and he was clearly surprised.

Stacey showed the Deputy Director a researched article explaining that only between 1-2% of all pain patients are at risk for addiction. Brandon read the paper with interest and seemed surprised at the statistic. It was plain that he was listening.

Again, I noticed how he studied the paper which had been handed to him and looked genuinely surprised. I even had visual aids showing how the CDC guidelines were written off faulty data and studies, in addition to, the fact that one CDC doctor was federally funded by the profits he had earned from real addicts only to turn around to use this very money to work with the CDC in order to declare more patients as addicts. This was a clear conflict of interest which, again, we both pointed out to the Deputy Director.

We told him that it’s estimated 40 chronic pain patients take their lives each day. I argued we have a duty to stop these from happening and start treating these patients with the proper medical care they deserve.

The conversation was robust and covered a lot of topics.

As it was ending, we asked how we could really make a change.

He urged us to focus on changing state law. Stacey quickly handed him a draft of a new law for chronic pain patients drawn up according to Indiana guidelines. She wanted him to know we were there to not only discuss the opioid problem but that we also came with solutions, as well.

He recommended we attend bill voting meetings and be ready to speak, and have other members in our group reach out to their states too. He also informed us that phone calls were much more effective than emails. I carefully wrote every suggestion down in my notebook. I was happy to hear pain patients could really fight back if they so desired!

Stacey and I handed the Deputy our binders which truly was a wealth of fantastic information for anyone who wanted to under the chronic pain issue. He assured us Senator Donnelly would look at them.

On a personal note, I knew as we walked out of that office, aside from having my daughter, I may had just accomplished more for humankind by going to this meeting than anything I’d ever done in my life. And it felt great!

I wrote a thank you email from the both of us and received a very pleasant response from the Deputy Director. I’m encouraging my group to gather the strength and do what Stacey Fields and I had just done-set up a meeting with their state representatives and bring actual information and facts for their representatives to look upon as they considered what harsher laws would do to both patient and doctor. I couldn’t have planned a better meeting and I’m hoping this story will encourage and assist others who are fighting. This is something within our grasp, if we stay determined, focused, and educated as a group. In short, we have the power to change the world. If we only possess the desire for that change, and I’m confident we all truly do!

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Authored by: Rachel Beals

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M.Billeaudeaux

Ms. Beals, thank you so very much for your hard work and commitment to help chronic pain patients and pain physicians. We have all been affected by the “epidemic”. Seems as though the government is attacking the wrong people. Pain Management physicians studied pain for years, they know how to treat their patients, they are trained and educated to do so. Now you have these government officials coming in and telling doctors how to do their job, how to treat their patients, and what to prescribe if anything anymore to help them. I know my doctor is beside himself with all the new regulations coming down from the state medical board. Recently, I received a letter from my health insurance about a medication I take and was told the doctor prescribed too much for me. I want to know how they know so much about my personal medical record? They don’t— but think they can order your doctor on how to treat their patients now. Imagine that, the insurance company is now my pain management doctor.
I applaud you for your work to make changes and I was so happy to see this topic being covered. Thank you so much for going to see your senator. Thank you so much for being our advocate. You have done something very good for us and I for one am so grateful.
I hope everyone writes to their senator in their state for help with this.

Kathryn

Thanks for this, Rachael. I truly hope this ignites a much needed fire in our suffering community. I hope this Senator attempts to spread his new knowledge and considerations of our cause so that good leaders like him can grow change at the Federal level.

CATHY KEAN

Oh my gosh girl you’re a rockstar I’m so proud of you! XXOO

Rachel Beals

Hello Everyone,
I’m getting quite a few people who would like some information on what to bring to your state representatives office after you’ve arranged a meeting. My first suggestion is to look through google CAREFULLY and determine what information you think will be useful to your particular State. Also, I’m posting a link to some important articles which should apply to all! Please keep trying to get through to your state representatives, it’s just so important right now. And remember, phone calls versus emails ALWAYS get more attention. Do try to call whenever possible, okay? Thank You!!
https://www.dropbox.com/sh/onf62ki0dugyis7/AABO1gscJRqV7MwV6kV6ybO-a?dl=0

Sheryl Pietrick Donnell

I live in.Illinois and boy would I like to talk to you. Our Senators are amenable to a meeting but I am just one person right now. I have all of the same information you have talked about. I would love to talk with you before I schedule my meetings to get some pointers. I am on Facebook and can be found easily as well as Twitter. I’ll send you a message both places. I hope you don’t mind!!

Kel b

Thank you for all you have done. Getting this and more in the media is key. Everyone should be contacting the media in all states. The more people who call or email media the faster the response. And they will come to your house. So those of you who can’t leave the house, invite the media over!!
I would also like to see your documents to use in my state WI. I’ve been contacted by phone from one of our reps and will certainly contact him again with more facts.
You can send info to kelliekg1@hotmail.com
Thx again for your work & determination!!!

#WhatTheySaid- Thank You! I feel like I would’ve been a good advocate, before I lost my ability to concentrate, and fight. I used to have passion, and drive, and I genuinely dreamed of being seen as a force to be reckoned with in my efforts to shed light on “(our side/the truth)” through travels that would take me around the world to participate in speaking engagements, coordinating important meetings, and hosting events aimed at raising awareness. I honestly felt that my multifaceted experience in this fight could help to have us taken ‘seriously.’ I’m a seasoned vet with 15+ years of hard time under my belt, currently living with Chronic Pain that was *successfully managed* with (compliant) opioid therapy (after) being tortured for the first few years due to standard protocol & first enduring unsuccessful “alternatives,” (and a lot of waiting)… In addition to that exciting piece of my resume, I’m probably one of the most [Experienced Mourners of a Loved One Lost to Opioid Abuse and Addiction]. Not to say that any particular loved one, or family member is any more, or less significant than another… for the sake of diplomacy…but in my own mind, and humble opinion- [losing my twin brother] certainly feels like I’ve won the Highest Award for ‘Most Painful Heartbreak’ in an “I know what dying feels like, and I had to stay here” type of way. Regardless of my feelings on how to prioritize who’s most capable of handing you your own end of the world- my point is: I know the other side where they say “opioids are bad, they’re evil,” and thanks to their role in the death of a loved one, they’re astronomically misunderstood, and falsely labeled as a Great Big -Nope! I get it, and I know there are folks who abuse them- but the cruelty in fact twisting, statistic fabricating, and the oversaturated embellishments related to the effectiveness of opioid tx- whether to say they don’t work, they’re just plain dangerous outside from outrageously limited and dramatic circumstances, or any other recycled media reports parroting the Anti-Opioid Puppet Masters when it comes to Demonizing Opioids as a whole – is Painfully Unfathomable, and Spirit Crushing. It’s similar to what I can only describe as ‘Living in The Twilight Zone.’ Even after I was personally harmed at the start of this (who done it) which hunt, and lost my Doctor of over 12 years in an abrupt dismissal from the practice without so much as an ‘I’ll call you in the morning,’ I struggled to accept that such an irrational resolve would stick. I believe this denial stems from having had too much Faith in our Country, and what it means, or what I thought it meant to be an American Citizen. It took the pain and suffering from relentless pain, losing everything I had, (job, car, home, literally-most of our clothing, sentimental items from loved ones who’ve passed away, and my children’s keepsakes from over the years), and a… Read more »

M.Billeaudeaux

Thank you for your work in trying to make our representatives understand our fight. I have written to my congressmen, and to Dr. Price when he headed Health and Human Resources. I have NOT received one reply. I will continue to email, write letters and call them until they recognize our dilemma. Until they themselves have to deal with chronic pain issues or have a loved one in pain, it will be an uphill battle for us.

Thank you. Let’s continue to push the issue.

Cary Cassell

Thank you fighters! Especially thank you Drs who regularly write this site. Both of you are truly helping those in society who have difficulty helping themselves. Thanks again
I have called and written state and federal representatives in Kentucky without response. Would be willing to travel to representatives offices with others in Kentucky to advance this issue. Cary Cassell Bedford Ky

M.Billeaudeaux

Thank you for your time and attention given to this chronic problem of pain patients being turned away or being turned down daily. We all fear that we will suffer needlessly at the hands of the government. I have written on a number of occasions to my congressmen as well as Senator Price when he was head of the Opioid Epidemic Committee. I have yet to hear back from any of them. I will continue to write on our behalf regardless. I hope all pain patients will do the same, we are only strong in numbers and voices. Hopefully, we will be heard and that our doctors will once again be free to prescribe the medications which help us best. They know the addicts, they know the chronic pain patients and they know the difference.

Sandie Hamilton

Rachael excellent report on your meeting. May your words have fallen on good ground. It just goes to show we have to keep respectfully submitting and resubmitting the facts. There are people who are listening. I pray this have long lasting far reaching results.

Wanita1

http://apps.who.int/iris/bitstream/10665/44519/1/9789241564175_eng.pdf this is very helpful and confirms rate of addiction-based on over 50 years of data

Rachel Beals

Hi, this is Rachel Beals. I just want to let everyone who’s commented know that I’ve received their messages and I am putting together the necessary information which they will need in hand to see their representative, as I have.

Feel free to email me at rachelebeals@yahoo.com

Thank you, Red, however I would like everyone to know my name is Rachel:)

Kristin

I’m also very interested in getting the info that you used. I’m a 49 yr old married mom of 3 boys 17, 19 and 24. In 2001 I was talked into surgery when the boys were 1, 3 and 7 for a herniated disc. Even though I had told the dr I thought it was getting better, I was told that was impossible and being naive thinking all doctors knew everything I went against my gut feeling. The surgery obviously was a failure and now I needed a fusion at the L5-S1 level It has been a wild ride since then. Steroid shots made the pain worse. I did and tried everything I was told. Except for a fusion. The odds just weren’t there and not all doctors agreed. (Now it is not even an option). After 5 years of trying everything and anything I was put on a combo of morphine and oxycodone for break thru pain in 2006. I had already been put on a benzo for anxiety after a severe allergic reaction to steroid shots, but I also found the 3 meds together helped a lot. This allowed me to care for my boys, bring them to their various sporting events and even help coach. I had always been active and I was not gonna sit on the couch. My pain was never gone, but it was managed. My primary doc retired in 2015 but said I should be fine since my records were perfect and I’d been stable for almost 10 years with no changes. (Except for reducing my morphine by half on my own.) She couldn’t have been more wrong. No doctor wanted me. It was awful. (One doctor I called said “nah, I’ll pass” he said because of the opiate crisis, then he actually hung up on me!). I got back into a pain clinic after my dad brought me to ER since nobody would help me. The pain doctor told me I had to taper down to the 90 mme per Maine law. This was literally 9 months of hell. Things you take for granted like reaching up into a cupboard, opening the microwave were excruciating. I was 23 hours a day on heat pad on couch. Life had come to a sudden halt. I gained 12 pounds and for the first time in my life I seriously considered suicide. I refused to give up walking my dog. I’d already lost so much! But there were days I could barely do that without almost passing out from pain. I was scared of the way I was thinking. I kept a journal in case I didn’t make it. I wanted my husband and family to sue. My husband had to grocery shop and cook after working all day. Thank god my boys were older, but they still needed me! Then I saw 2 men on the news hired a lawyer. I called along with over 100 other people. I ended up going to our… Read more »

Catherine Pridemore

I an associate of Rachel Beals and she has stated she is so very touched by the response to the article. This is what she works for everyday ( is to reach people who want to be proactive in this crisis). She is working on the files requested by everyone. I will give an update to progress later.

I too would love a copy of your information, or a link to print my own. RHO2061876@MARICOPA.edu

Thank you Rachel!! I love in New Jersey and I am Just going through the SAME thing!! My Dr left the practice his co workers refused to take on his pain meds patients said we need to go to pain management. Ok I did Thank God I had just had a MRI after many many refuses from my Insurance comp to pay for the MRI!! I have arthritis fibromyalgia, five bulging discs in lower back upper is 3 discs in my neck and a car accident from 1986 shattered pelvis dislocated hip ETC. Needless to say I AM in constant pain WITH the meds and I can’t stand the way I feel when my usual pharmacy doesn’t have the pain meds in stock NO OTHER PHARMACY WILL FILL PAIN MEDS if you aren’t already THEIR customer!! I feel I’m looked at like a drug addict and I despise the feeling they have given me!!! I’m embarrassed to fill MY OWN prescription because of the way I’m looked at by these so called friendly caring pharmacies the big names ones!! Long story short they need to just weed out the REAL people in pain from the people just wanting pain meds to get high!!! That’s truly sad because those people are making my life and so many others a living hell besides having to prove we’re truly are in pain I’m so happy you spoke up can you come to new jersey please!! Lol!! Thanks Rachael and Stacy can you please add me to your group? Thank you,
Sincerely
Jacqueline Fisher

Mr Marty

Thanks Rachel. Great work. Hopefully, your experience will help motivate our pain patient community to DO more, if physically able. I’d also love to obtain your statistics, if possible.
mfolker59@hotmail.com

F.S.T.

I agree with many of the posters here. Though all be chronic pain patients, only some of us are physically able to represent the rest of us. Please, please make your work available to others so we can fight from the same page and have agreeable info. To have statistics from all over the place would show that we don’t know what we’re talking about. Thanks for your research and all the legwork it required. I’d gladly say that you and Indiana sufferer get THE credit.

Jim l too live in PA near greensburg which is about 35 miles from Pgh, wld like to know who you emailed & actually got a response from as to attempt to do the same. Could u tweet me @ elianok10 or email me @ e.kacik2@aol.com would so appreciate your help.

Rachel can you share a little more about this website where you can buy meds, as of the 1st of the year, we are all facing challenges not only with our doctors but insurance companies & then pharmacists cutting CPP @ their own descretion. I cannot even get my blood pressure meds until l try something cheaper. It’s a true nightmare. Do u absolutely know if this is legit because it almost sounds too good to be true, but if u cld kindly give me more information in regard to this website l can’t express how much l would appreciate it. My email is e.kacik2@aol.com rx u again

Rachel Beals describes herself as a nobody. My reply to Rachel is simply this –
We are all ‘nobodys.’ But when we join together, work together, and magnify our voices, we are ‘somebodys,’ and create a force to be reckoned with.

Rachel and Stacey did a great thing – for themselves and for the Indiana pain community by giving a voice and a face to something that is really important to them and the citizens of their state.

They took the first step.

Valerie Hirschberg

I would really appreciate the research information you have pulled together as well if you are ok with sharing it. I don’t know if I have the physical stamina to start from ground zero in terms of getting the research. Well done.

Ibin

Great work Rachel. Consoladated factual information and statisics with “respected” authors would be a HUGE weapon to stop the persecution of the patients in the entire country. I have written my state representaives to Washington by actual letter, e-mail amd called by phone so many times that I am deemed fighting for myself only, when I am advocating for all people with intractable pain. I have received letters basically telling me that IF the issue comes before Congress, then it would be addressed. It looks like that IS what it will take for the elect and appointed to realize that the remedy,the CDC “guideline” for opioid prescribimg physicians for the stated “opioid crisis” is harming….. more than curing. I personally am aware of a patient in my county that emded his life almost a year ago after attempting to find pain management, finally going to our local hospital, lying down in a room ( without admission) and pleading for help. He was moved to the psychiatric ward for a few days, told that he was simply addicited to pain medication and sent home. Within a few weeks it was all he could take. This totally unacceptable.His narrative has been totally dismissed by the medical world.It is difficult to unite the “voice” of all the patients. With narratives such as Rachels, maybe the voice will be heard. Thanks for the information of “how to”.

Carol Hammond

Rachael, your letter is inspiring and easily understood. I am 73 next month and it is impossible for me to do what you did because of pain. Do you have any suggestions what people like me can do to make our mark? Following is my story that I believe is unusual, my clinic kicked all pain patients out. If you agree with me please feel free to let people know about this clinic. My Story. When my Dr. retired I chose Dr XXXX because I thought he had a very good education and he was one of three doctors I had to pick from after my long time Dr. retired. The first time we met I was very disappointed because this Dr. never read my history / Dr’s Notes from Dr Pxxxxk who I saw for over 15 years. I have Fibromyalgia and many chronic pain issues, we tried everything to help the pain. I even took part, on my own, a Fibromyalgia Study at the University of Washington for over a year. I was finally put on pain medication; it has worked since early 90’s and the dose remains the same. Dr. Txxxx finally decided he would continue on with what Dr. PXXXK planned for me. This is the terrible part of the story. Dr Ta decided to go to work at Overlake Clinic/Hosp. The reason was he didn’t want to deal with pain patients and moving to Overlake meant that he could refuse to work with pain patients. He could also get rid of all of the patients from Dr PXXXK that he inherited. He gave me one name to chose from Dr GXXXA. She would get less than one star. Because we moved to Northern Idaho and SADLY found that no one wanted pain patients. I had to stay with Minor & James; a 800 mile round trip. We saw Dr GXXXA for the first time. She said in the first two minutes of our appointment that she would not prescribe my pain medication and she recommended we go see a pain clinic. That is when I SADLY understood. This wasn’t about me this was about PAIN PATIENTS! Minor & James along with most Clinics are kicking ALL pain patients out of clinics. The government has put the fear of God into the medical clinics and doctors. I know that pain clinics are set up to take our pain meds away not help us with our pain. This is very dangerous. I am 73 in January, I have other problems including my heart. I am afraid that this process is going to be a very bad thing and in the end there are NO alternatives and pain will be unbearable. I do want to say one thing about Dr TXXXA and the other Dr’s that will not take care of pain patients anymore. They are beaten down and scared to death of losing their licenses. Pain Patients are hard to help. After I was kicked out of… Read more »

Just to repeat what many others have already commented on: Good Work! I, too, would like to have access to copies of the resources and fact sheets that you used to get a “response” out of a politician. I have written many letters on behalf of my patients, and I am tired of it. They express interest and concern, but nothing happens. I have been encouraging my patients to become their own advocates, because if they don’t start standing up for themselves, and discussing what life is like, with and without their pain medications, pretty soon they will find they have no access to them at all. The Oregon Medical Board is just one of many agencies across the country that is misusing the CDC Guidelines and adjudicating them as “laws” or “regulations” that must be followed. So many providers here have lost their license, been forced to retire, or put under probationary watch while being mandated to decrease all their patients medications by 10% per month, every month, regardless of worsening response. All the other providers are being intimidated by these acts and most are refusing to even prescribe pain medications anymore. Our local physicians organization, DCIPA, in conjunction with the local hospital, Mercy Medical Center of Roseburg, created a Community Care Organization (CCO) to manage Oregon Health Plan (OHP) funds locally. They started eliminating pain medications from their OHP patients back in 2013. As other CCO’s saw little backlash from it, many of them started to do the same. Was this done for better patient care, NO! It was done to reduce expenses and increase their year-end bonuses to their physician members. What a conflict of interest: deny care to increase your own personal income! Now the state of Oregon has enacted the policy state-wide as of January 1st. Talk about income discrimination! If you have good insurance, you get your pain medications. If you are poor and on OHP, you get nothing, despite having the same medical conditions! If it hasn’t happened in your state, it soon will. Be attentive to the changes that are coming. Another 20% reduction in opiate production is mandated for 2018. Chronic pain patients who have never violated their pain agreements or been caught abusing their pain medications are being decreased or denied their opiates, while the true addicts who have abused the system and been caught purchasing opiates illegally are not suffering. The federal and state government even pays for their access to needle programs, monitored heroin injection facilities, and methadone treatment facilities that really never get the addicts off their drug dependence. But corporations and medical personnel all across the country are making millions from it. The CDC Guidelines and more will not affect the street supply of illegal drugs brought into the country and processed into fake pills. The CDC Guidelines will slowly cause more patients to lose their legitimate and monitored access to prescribed medications and then they will be forced to turn to the black market, alcohol,… Read more »

Barbara Thompson

I think it would be great to have access to the binder information so we are all advocating from the same set of facts. It would unite us and give us a greater voice. If I had those materials in hand I would have greater confidence, and like many other chronic pain patients, be motivated to contact my state representatives.

Dooney

You go girl!! There are articles out there other than what is being posted on pain sites that state exactly what you told the rep but they are few and far between and not reaching mainstream media. Even with what happened to Dr Tennet, I googled to see if that made any kind of headlines and sadly it did not. But if a few of his patients died it probably would have. Neither did the lastest story about, I think he was a politician, being charged a crime for allegedly providing his wife a gun to help end her suffering. The facts, statistics, and lies being told, and how much the pain community is suffering (and doctors being targeted), is apparently not newsworthy enough for anyone it seems other than us.

Michael G Langley, MD

Having researched it in the past, I agree with your numbers about addiction. I trust the suicides are equally correct. It is sad that the media is not portraying this “opiod epidemic” as it truly is a heroin/illegal Fentanyl problem! We suffer because of the ignorance that is running in the media, as well. Their reporters never seem to understand the pain they are causing those of us that take our meds as directed.

William Dorn

Now if only you could get the major media to report these facts.That would shame our elected officals into changing these inhuman guidelines.Remember they do everything that they think will get them votes.This epidemic is just the latest vote getter.They dont care about the truth.So call your local media.

Brian D.

Thank-You

Jenny Picciotto

Commendable and encouraging. The patient side of the equation needs to be given a voice and you have outlined a successful way to do that. As others have already mentioned, it would be terrific if you could share some of the resources you presented. Good work!

Denise

This is what no doubt had to be ruff journey to get through your pain to an open door..Well done . As we have been struggling with our own pain issues and trying to be heard. It is encouraging to be connected with sites like this, and I pass on to a community of pain friends, story’s and information that gives us hope. We are driven by Pain yes, but I do believe its more about right and wrong, and who we are as individuals with hopes and dreams.I was a single mother at 29 my life in an instant changed. I just turned 60 Yet I continued to try and live a productive life with this anchor of Chronic Pain to pull around. I have been sending emails ” TO THE PRESIDENT ” with the standard replys, and talking to everyone just to bring awareness of what is being done. I would also like to have if possible the information you have gathered, so that i too can open the door of the eyes my state..Nevada

Misty H.

Thank you so much for giving chronic pain patients a voice. I would love to do the same in my area. Is there any way you can share your reputable sources? Getting up and dressed everyday is a battle, along with fighting for health insurance at the moment, and fighting to keep disability benefits. All of the stress has flared my MS and between that and my crushed vertebrae I am not sure how quickly I will be able to procure information. It would be great to talk to my representative armed with valid facts and a potential solution. We need to band together and do this in every state, county and town. My email is Mademoisellemh@hotmail.com. Thank you again. I’m glad you were listened to.

Jane

I’d like to see the actual info linked as well from this meeting fir everyone to use. I would also like to ask : where is the data showing what the actual VOTES have been from all these state reps regarding statehouse house meetings re: “0piod crisis ” sessions and chronic pain sessions. The chronic pain sessions in CO were in July. The “opiod crisis “session was oct 23, which I taped , spoke 3 times at , and that lasted 9.5 hrs. What I heard and saw was mostly PROP and CDE propaganda and the “stake holders” were insurance reps, opiophobic doctors from local hospitals , drug addiction centers and drug addicts blaming their addictions on pain medication despite info to the contrary. Please compile data showing the actual RESULTS from all cpps efforts and meetings / calls with reps asap. We’ve all reached out and I’d like a sample study of who, what , when ,where , and the actual votes from these reps.

Thank You ….

Liz

When I spoke to my senator’s office (Murphy, CT), I spoke with a woman who I believe was his HHS adviser. For the most part she said the same things your senator’s worker said, but the one thing that really seemed to interest them was how I’m both a pain patient AND had a family member die of an overdose of illegally-obtained pills. This was over the phone, so no way to hand over material, but I told her exactly how that death happened and why: that she was clean for a year, took her old dose, ODed, her boyfriend was afraid to call an ambulance and left her to die alone. The thing I told her that she said she’d never heard before was something my doctor told me. My doctor had heard me discuss this family member with him since when I found out she was an addict, so he knew how she got addicted, the horror story of her doctor (he went to prison for illegally prescribing and for raping patients), and that she’d gone clean and was doing wonderfully. When I told him that she was dead, his first reaction was “did she take her old dose and OD?” And then he told me how common that was, that addicts will get clean for a time, go to use again, take their old dose and die from it, because their tolerance levels have gone down. I pointed out that, just like other drugs and alcohol, straight prohibition has never once worked, but what would have worked in this and other cases was actual, realistic education that said “we don’t want you to use again, but if you, please take a small dose because your tolerance level is down and we don’t want you to die.” That is the only thing that would have saved my family member. The HHS worker noted that and said she would definitely pass it on to my senator, because it was something they’d never heard before. She also noted that despite losing their child, even the parents of my family member have never once said that they want me to suffer because of what happened with their daughter. In fact, her step-mother has been campaigning for better treatments and more understanding for fibromyalgia patients. They know that myself and others like me aren’t to blame for their daughter’s death, and that we shouldn’t have a horrible life under the misguided attempt to “save” those taking illegal drugs.

Kathy C

This almost sounds encouraging. Unfortunately our Politicians are still listening to the false narrative provided by our Media. Every day there is another scare story about “Drugs.” They conflated the numbers for 2 reasons, one to sensationalize drug crimes, and to discredit sick people. Our Healthcare System is broken, and the only way to keep it hidden is to keep the numbers away from the public. The average person has no idea how much of our National Budget goes to healthcare. At the same time the Media is still peddling the ideas of “Innovation, Profit, and Cures.”
Our Politicians and Policy makers are not listening, like Pod People, they will patronizingly agree and smile, and then take money from one of the players. They don’t run into any of us at the expensive galas, Fundraisers, or on the Golf Course. At the same time they are invested in this nightmare.

Danyce R

Is there a way we could access the materials you shared with you representative? We want to stay on topic, and be sure to share facts over opinion!
Thank you for this. What you’ve done is important!

JoDawn

Yes!! I want that binder, too!

If you have a list of sites, though, I’d happily print up my own!
Every official on the state level and up, needs to have been given that info. Even if some of us have to call & then follow up with mailing a copy of our sources.

Woohoo, girl, well done!!!

Excellent article, Rebecca May. This is exactly the process in which I and some of my colleagues have been trying to encourage pain patients and family members to engage, for the past year or so. I’m very pleased that you were successful in being heard.

I would very much like to see the information packet you left behind, so I can learn from it and perhaps pass parts of it on to others engaged in similar lobbying of their legislators. In the same spirit, feel free to disseminate any of my published work from http://www.face-facts.org/Lawhern.

Ppl don’t forget these politicians must be made aware of what the DEA and CDC are doing to our health care and the right to be treated as the doctor wants and not according to their guidelines.The guidelines that a major D.C. law firm filed a lawsuit against on the same day issued.Once they know they can take this info back to their meetings in capitals and to Washington DC and ask the DEA and CDC what’s up with punishing these ppl with chronic pain? That’s how it works.Dont assume they know about this issue,there are many issues in America today.FIGHT!FIGHT!FIGHT!

Byron

You all need to be talking to your Federal officials as well – Representatives and Senators. There is a very important (and horrible) bill recently introduced, HR 4482, the Meadows-Renacci Opioid Abuse Deterrent legislation. HR 4482 will be referred to the House Committee on Energy and Commerce as well as the House Committee on the Judiciary. Those are the Members of Congress who should be contacted!

Remember that Deputy Directors are paid to listen and act like they care,he must be an enthusiastic one but will he relay to the Senator?His response to your question about the actions of the DEA is the standard response the DEA and the CDC have instructed politicians to give”,THAT IS NOT WHAT WE INTENDED TO DO”.What most specifically needs change is the 90mme limit! This is the problem!I am a Hoosier so I know this politician,he and Republican JIm Merrett who is a huge anti opioid proclaimer butt heads in central Indiana.You will be surprised though to find out how many ppl don’t know what’s happening in the doctors office of Chronic pain patients.They naturally think that our pain is treated if we have obvious pain issues.If you have documented pain ppl think you should be treated,so they think that’s how it is.But it’s not! This is a good effort,don’t get me wrong,but at this point you can only work your but off to only keep them from making harsher laws.The DEA MUST BE TOLD TO TELL THE CDC TO AMEND THE 2016 GUIDELINES OR NOTHING WILL CHANGE! IT WILL GET WORSE! Lord knows this area in central Indiana was hit hard by the DEA,I happened to have an appointment on one of the days they hit my doc’s office,my doctor continued with our appointment untill we were finished keeping his composer.I was proud of him.There are few pain doctors in central Indiana now the area is prime for heroin dealers! I can only assume that’s what the DEA wants.lol.I survived my doctors cut of patients and have went thru a reduction to 25% of what was working,which really wasn’t alot anyway.I settled for 3 10mg Methadone a day for my 90mme,it kinda works but whatever that’s the way it is.SORRY TO SAY THEY SMACKED IT TO US!
Any keep up the good fight I am too busy cursing at the sky in pain.lol

Barbara

Thank you for your great work Rachel! I wonder if you would feel comfortable publishing the fact sheet you created so that other might use it in their advocacy as well? Carry on!

Andrea Anderson

Thank you so much for your diligent efforts. May I ask where you found the statistic that 40 pain patients are dying each day? I’d love use that info if you have a source.

Thank you for the great article!

Kathy

I’ve known I have Ehlers Danlos Syndrome (EDS) since I was 9. I am now 67 and just got connected with support groups and learning more about EDS. It was just something I had and learned to adapt my life around my “limitations”. As I’ve gotten older, I realized that my body was basically falling apart! Brain aneurysm, dentures at age 38, detached retina, gastro issues and most recently renal failure, to name a few examples.

I wish I had reams of facts, statisics and more – lots more – information to address the pain medication problem we are facing. After my release from the hospital for acute renal failure; where they discovered I also have 3 broken ribs, I was given 15 low dose (5mg) Oxycodone pills. When I saw my PCP, a month later, I asked for pain meds. She was more than relunctant but ended giving me the exact same prescription as I was given back then. I’ve seen 2 other doctors since then and neither gave me anything for pain. I wasn’t “shoping” for pills. One doctor was my new Urologist and the other was my new PhysioDoc, who is setting me up for therapy. So I will continue my life in pain. Not the quality of life I deserve, however.

Living in Virginia, I did write to my senators; Kaine and Warner. Senator Kaines assistant replied that a “reputable doctor” could write pain medication prescriptions. I challenged that statement by stating doctors are running scared by the new guidelines, rules set out by our government, CDC and DEA. I did not get a response to that.

I pray that people in Virginia and all other states can do what was admirably done in Indiana. Our silent illness is screaming for help!

Rachel

Well done Rebecca, a fantastic achievement. I wish you and your colleagues continued strength in busting the opiod mythology. The addiction statistic is actually 0.03% (1:3000) according to a top Pain Dr here in U.K.

Jim Moulton

Very good work, getting people together and contacting your local legislative people. I have been contacting and talking to a local state congresswoman here in Pennsylvania. She had an article in her e-mail newsletter about the opioid problem. I e-mailed her twice and she called me back. I told her about the chronic pain pt.and how this is effecting them. She actually agreed with me and old me a story about a pt who got surgery and the surgeon only gave the pt meds for one day, and they had to go to the er the next day to get more meds, I said to her, this type of story never gets talked about.

Signe Topai

So, where due we get the hard core facts from reputable agencies?