Opioid Bill Heading to the White House – It’s About Addiction Not Chronic Pain

Opioid Bill Heading to the White House – It’s About Addiction Not Chronic Pain

By Ed Coghlan.

President Trump – a year after he proclaimed the opioid issue a national emergency – is expected to quickly sign a sweeping opioid bill that the U.S. Senate overwhelmingly passed on Wednesday.

The Senate approved the bill 98-to-1 (only Utah Senator Mike Lee voted no) after the House passed is 393-8 last week.

For a federal legislature that has been paralyzed by political division, this is a rare bi-partisan moment.

The bill is a composite of literally dozens of smaller proposals sponsored by numerous lawmakers who are looking to position themselves against opioid addiction in the November elections.

If you’re wondering what’s in the bill for the chronic pain community, the answer at first glance is not much. Here’s how the Washington Post summarized what’s in the bill—and you’ll see it is mostly about addiction.

As an example, here is what California Senator Dianne Feinstein said:

“Congress is finally taking action to address the drug overdose problem that has reached epidemic levels, claiming more than 70,000 lives last year alone, including 49,031 that were opioid-specific,” Feinstein said.

“We’ve seen the rise of powerful synthetic drugs like fentanyl that have the potential to make an already terrible problem worse. Exposure to miniscule amounts can have deadly consequences for users as well as first responders. That’s why this bill takes a broad-spectrum approach to meet the opioid crisis head on.”

“The bill reauthorizes critical substance abuse prevention programs, expands access to treatment and provides law enforcement with tools to stop the trafficking of illicit substances.”

The bill certainly gives more attention to treatment of addiction – creating a grant program to comprehensive recovery centers that include housing and job training and would also increase access to “medication-assisted” treatment to help people with substance abuse disorders wean themselves.

But it is silent on the chronic pain issue and the patients who use opioids to manage their pain—again pointing out the lack of attention that elected officials are giving to the 100 million Americans who have chronic pain.

We have two questions that we’d pose to our readers – please let us know what you think in our comment section:

Why do you think the chronic pain community is not being considered in this legislation?

What do you want Congress to know about chronic pain?

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Authored by: Ed Coghlan

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Rae Ann Fritsche

I wrote this on my Facebook on October 28, 2018, three days after my dad committed suicide by shooting himself in the head… “I am realizing there is a huge piece missing from the discussion of suicide and suicide prevention. I have had lots of comments about inner struggle, depression, the world being too much etc, but what is missing in the discussion is chronic pain.
Since June, my dad had been waking up in too much pain to get out of bed. A cortisone shot brought him some relief but when he said he needed another one he was told they aren’t good for him. At one point he was given 7 hydros and a follow up appointment in 14 days! He would wake up and call me saying he didn’t know what to do because he was in so much pain. On Thursday he reached for his pistol instead of his phone. He wasn’t thinking about how he wouldn’t get to see his grandson drive or his granddaughter get married. He wasn’t thinking of how he’d never hold his great grandchild. He only wanted the physical pain to stop. He wanted to be able to go coyote hunting and do his long range target shooting. He wanted to be able to take his grandkids on big shopping trips to the mall. I’m not trying to blame others because ultimately the choice was his, but I think in societies rush to prevent drug addiction and in our decisions on how to care for the older population, we have left people to suffer. #suicideprevention #chronicpain #imissyoudaddy”

Etowah

I’m at a loss for words. I am friends with my congressman’s chief of staff. I wrote to him yesterday. I didn’t realize it was too late but FWIW, my congressman, Barry Loudermilk voted NAY on HR 6! I’m not sure why but I’m going to find out. I tried to give them, .a view from our perspective. I know it was read.
I’m in so much pain today I can hardly move. I’m canceling an appointment with my eye doctor because I just can’t make it today.

Lisa Berger

I want congress to know I was a productive member of society working as a RN but now am basically a bedbound shut in going through disability application. If I could be treated adequately as I was before I’d be a tax paying member of society.

Mary Weller

I want them to stop punishing sick people. We don’t abuse the drugs that help us have some semblance of a life. Let us get back our doctors and allow them to care and treat people. Millions of lives are at risk!

Deb McFadden

I don’t believe that the Republicans are capable of responding positively to anyone who is in need, look at their disdain for the people who have pre existing conditions! I’ve seen people who are blaming the Obama administration because the CDC put these guidelines in while he was in office however they’ve been used by the Trump administration to start a war on chronic pain patients and their doctor by Sessions (take an aspirin and tough it out) and the DEA. We are the target of his new war on drugs! I think that there are some in Congress who may be sympathetic to the plight of the disabled but if they are ever going to take action to help anyone who is ill or disabled then you’d better find a democrat to vote for because if there’s not even enough political power to keep people insured there’s no way to get this administration to stop the war against the poor (everyone who’s not a millionaire) and disabled! If you are a Trump supporter and can not see the negative effects that his “opiod epidemic” and other propaganda surrounding this issue is having on your life then I don’t know what to say!

Heather

They are quiet because nobody wants to touch the issue yet. Afraid to start the conversation. I am a domestic abuse victim which I HATE admitting. But I am forced to when I discuss my chronic pain. The abuse started when I was 18 and stopped about 10 years later. But not before leaving alot of damage. Now at 38 years old I don’t have the best life physically but my meds help. I was diagnosed with Complex Regional Pain Syndrome. As I get older it slowly gets worse. In 2015 my meds where cut 50% with no tappering. This resulted in my CRPS showing its true nature. I never knew how bad it got until this. Now I went from a woman doing yoga and taking long walks for my health to not being able to walk up n down the stairs normally. Very sad.. Then 2017 I agreed to try a lil taper to see if I could handle it. My hope was that my pain wpuld stabilize at this point. Went from 40mg oxy 2x a day to 30mg. I did ok for that month. I requested myself to go to 20mg. Pain moderately increased in the mornings but I was determined. 3rd month I requested 10mg 2x a day. OMG big mistake! I began having a sunburn feeling (even my eyelids and lips were burning) all over and spasms of what I can only explain felt like bee stings on my left ankle, foot and calf area. I was so scared. IDK what was happening. Continued for a whole month. NIGHTMARE So doc brought me back up to 20mg 2x a day which helped decrease the pain. I was only getting the bee stings in my sleep. So by 5th month I’m put back up to 30mg. Never touched dosages again for the past year. I still get those stings but not as often. Once or twice a week for 30 longg seconds. It happens without warning. I begin screaming it’s so bad. My ankle itself aches all day now right started too. My point is I tried. I DO NOT WANT TO BE ON THE MEDS. But I cannot help it. There is no other treatment avaiable to me. Because I tried my best to tapper I’m actually now suffering with more pain. Something triggered my disease during that taper.

I also have changed my mind about voting because the truth is, whom ever is running with say or do anything that will get them votes and the media is not covering chronic pain patients. I was given some interesting advice from a lawyer, he said to contact the university of law as he felt it would get free assistance for me and media attention for them. We need to get lawyers interested and involved as some in Maine have gotten media attention for an exception for chronic pain patients that only function with pain meds. Find out if you have law schools in your state and mention media attention for them as incentive.

Anna Webb

The chronic pain community isn’t being considered is because Chump wants to kill us all off, so only the white and multi millionaires and billionaires can take over.They don’t care about anyone but themselves. About congress, they don’t realize that we did not ask to be the way we are.Every person has a different reason for chronic pain, I, personally have severe degenerative bone disease, 4 kinds of arthritis, and now I am losing the use of both hands.I definitely did not ask for all this.anna webb

et

The answer is simple as to why Chronic Pain Patients GET NEGLECTED ,not very well ORGANIZED !!! Send the CDC and Others Hard Data of Records Supporting how Good They Take Their Medicine ,How many Death and Overdoses ,How many Patients turn for Help !!! There are tight Controls in place at Pain Management Clinics ,WE are Part of the Solution Not the Problem but we need All the Statistics to Support THE CHRONIC PAIN COMMUNITY !

Chris G

I would like to see every politician that uses the word “opiod crisis” to sign a pledge to never accept an opiod prescription or drug NO MATTER WHAT happens in their lives to themselves or their family. They can use alternative treatment or meditation . They do not understand to get basic pain meds the hassle it is to go to the doctor every month , the taking off work ( not to mention if it were not for the meds I would be on federal disability) the over prescribed injections etc. maybe they could force insurance companies to pay for Botox in my back where I had my spinal cord fusion, that helps much more than meds but it $4000 a procedure out of pocket each time. The politicians just want to see one side of it.

Bonnie Holloway

I just found this site, and I am so glad I did. I was wondering what I could do. I guess putting my voice in with everyone else’s is a good start. My husband is worried about all of this because of me. As am I. I have been on pain meds for eighteen years, and they have helped me to have a semblance of normalcy in my life. I have had 2 back surgeries and one neck. I have rods, pins screws and cadaver bones in my back and neck. I have severe arthritis in all of this. Plus had my ankle rebuilt after a severe injury. So I have pins and screws there also. The pain I have is tremendous. I am still trying to work to keep my insurance and to take care of my husband who has a badly damaged heart. He has lived five years longer than the doctor’s thought he would. I use a cane at home, and a cart at my job to be able to stand. And yes, I have been treated like a druggie. Believe me, if I had my way, I would not be this way. I am not a druggie! Never even smoked. This war on us from our own government is disgusting. They claim to care, but it’s all about jumping on the bandwagon. I am truly afraid of what is going on. I literally CAN NOT make it without the medicine I take every day. I am on just enough to keep it to a dull roar. If it goes, so does my ability to take care of myself and my husband. Thank you so much for what you are doing in informing the government of the truth.

Jeff

I’ve taken so much naproxen for my pain that I began vomiting blood. I guess the stats for ulcers, heart disease due to inactivity, suicide, depression etc won’t be monitored.

The politicians are using this as a tool to be a martyr so they can get votes. Welcome to the dark ages where mass punishment affects everyone as our elected leaders shine in glory.

We need people with chronic pain to be included on boards and committees. What if I go the alternative health route and a chiropractor makes the condition worst than what it was before? I’ve known people that were injured because of this.

To be honest with everyone, tomorrow really has be shaking in my shoes. As I get older and the condition worsens and the flare ups are here to stay, then what………….

Nora J Winn

I am 65 & in a mandatory program by kaiser (worst HMO ever but there is no other choice for me) to wean me off of my pain meds completely regardless of my ability to walk let alone work. I asked again what if I say this is it. I can not manage going any lower? I get a shrug & a new Rx for something that is not for pain that has higher side effects. Can’t use medical marijuana because kaiser has a zero tolerance. It’s either or. This morning I get call from my 88 year mother’s pri care Dr (diff’t medical group) office. She read this notice they are going to try to take her off of her hydrocodone. She only uses 2 per day. She has severe arthritis everywhere. She is in pain on some level 24 hours a day. I told this asst’nt I understand this directive comes from the govt. But there will be NO WEANING HER FROM ANYTHING! it’s ridiculous. She has never used much pain meds but she’s in awful pain now.
I’m at the point that I want to form radical resistance groups to get rid of every single rep in DC starting with the republican party that is so morally corrupt they have given up the right to tell anyone what to do. Then move on to the democrats who make zero effort to stand up to this madness.
The whole Medicare program is being reduced to rubble. Reimbursement rates are so low its hard to find Dr’s who will see you without other ins. Check out the new rules for getting medical equipment if u really want to get angry.
I don’t know how my mom will last if the Dr really does start taking away her pain meds. Her quality of life is already not good. It scares the crap out of me. I am fed up with our govt. I really want the politicians to stop interfering with our bodies & our minds. Go after the real criminals. I wonder how many of the politicians get put into these programs? Oh wait.. They make special rules for themselves. They get free health care right in the building where they work. But the rest of us are told we can go without. I think I need a pain pill.

Virginia R Trinidad

I am 75 years old with chronic pain, and I feel like I am lumped in the same catagory as a addict. I have no life outside doctors office pharmacy,I had 6 children and had to retire early on disability, so because I am in so much pain. I can not enjoy great grand kids, having to miss birthday parties. Family. functions be cause of my chronic pain. What is happening with compassion,?

Bill

Chronic pain patients have not been included because they are not considered significant by the politicians. Ignorance is probably a big part but also there is a general ‘lack of concern’. Because of this, they are potentially dangerous to those who suffer from chronic pain.

This periodical has shown us how important it is to have a united voice. Unless we are deemed ‘significant’ we will never matter to one of these politicians.

After we ‘matter’, it’s will be important to educate them on WHAT we need and WHY we need it. Wheather it is medication, certain physical procedures or compassionate caring.

Thank you for giving us a voice.

Charlene Wilson

Chronic pain patients see their doctors and specialist for treatment, trearpy, testing and medication. Those of us have pain, some of us very severe. I could not do any of my daily chores without my medication. We are people who are Not addicts, or doing anything illegal. Then go to our doctor and prove it, make sure my meds are there and nothing else. We are trying to have a somewhat normal life, Raising children, helping with homework and cooking dinner, baking cookies. I have bone spurs, arthritis, high blood pressure and Fibromyalgia. I’m in pain 24/7.
I would love to believe I could live without medication! I know better. I feel my pain. With and without medication…
  I have been fighting for disability for for several years. October of 2017 I had my hearing with my lawyer. Of course I was denied again. Now, this appeal, it’s up to the appeals board.
  I have 2 children. My 8 year old grandson and my 15 year old niece. They are all I have and my reason to get out of bed everyday.
  This severity of pain I Need More Help Not Less!😢😢😢😢😢

Heather

So first to answer the article, I noticed they are still using inaccurate numbers that include pills in the numbers while they claim illicit fentanyl is the real problem.
I HOPE the chronic pain community is not being included because we aren’t addicts! Although, that’s probably not true, they don’t care yet, we have to yell no matter how tired we are or how much it hurts. They don’t hear us yet!

I want Congress to know about Kathy’s post.

That should set apart. I’m one step ahead. My doctor retired. I found a primary willing to give me a few pills while I find a pain management doctor but pfffft. I’m 45 years old and I’m in pain from head to toe on my right side and my list of diagnoses would take too much room. Sure I can handle the pain to a certain extent, but the damage it’s doing to my body is starting to show, and the long term torture is changing me emotionally. Those pills aren’t just for pain. The government put suicide on our list of viable choices of pain relief. That’s the worst part.

ElizabethR

I am a fairly recent enrollee in this fight. Essentially everything that I would say has already been said so I won’t belabor the all too accurate points that others have made. However, I will add that at almost 82 years old, I am appalled that my government is making every effort to deprive chronic pain patients, including elders like me, of ANY joy in what may remain of their “golden years”. Are they hoping that we will just die quietly? I suppose our prompt demise would represent a savings of sorts–unless we inconveniently linger for months or years unable to care for ourselves. Or perhaps they would prefer a quicker solution–a sharp increase in suicides due to untreated chronic pain? That could happen.

Chronic pain patients who use medication responsibly are not addicts. There is a medical difference between physical dependence and addiction. We are not the problem. All we ask is the ability to retain the functionality we have and be as productive as we can. Who benefits if a previously self-sufficient elder, who is able to maintain a household, drive, run errands and generally live independently, is rendered non-functional by pain? Who benefits if she must enter a nursing home and become dependent on Medicaid? That makes NO sense from a human standpoint and certainly not financially.

Becky has it, the MUST DO FOR ALL PAIN PATIENTS… WE MUST ALL VOTE NO …NO MATTER THE PARTY….for ALL those turning a blind eye for political votes in November. Also, doctors who are “CHOOSING” TO NO LONGER TREAT ….because we are too much trouble need to be ask to find another profession.
I KNOW how hard this is for many of us barely able to function, but IF WE WANT CHANGE WE MUST FIGHT TO DO THIS FOR OURSELVES AND EACH OTHER!

Lori

I think one reason the chronic pain community is often overlooked and dismissed is the still pervasive idea that if you were stronger, you could handle the pain without pills. We still mythologize physical suffering – as if the ability to endure it makes one noble.
I don’t know if the origin of this has to do with our Puritan background, but it’s a very real stigma.
What people who have never endured unremitting, unsolvable chronic pain don’t understand is that chronic pain patients accept the fact that they are going to hurt every day, many for the rest of their lives. We’re not drugging ourselves into a pain-free existence.
We’re asking for a bit of relief so we don’t want to die as a result of overwhelming pain, so we can do a few things occasionally rather than curling up in a ball on our couches and beds. We’re asking to not be demonized for pain management that our doctors agree with and know we need. That’s all we want.

Jessica

What I want to know is why the CDC, and the DEA are now in the exam room deciding what is best for me, the patient, instead of my own Dr? Who I am paying for their knowledge and expertise to provide me with the best plan of treatment for me.
fAnother question I have for the leaders of our government is why
620,000 people dying/yr of heart disease, 600,000 /yr of cancer, and 88,000/ yr of alcoholism is no big deal but 16,000/ yr of Rx opiates is a “crisis”? The leaders of this “crisis” believe they know what is best for me over my own Dr. When did these “leaders” start having the legal right to decide what the plan of treatment is going to be over my own Dr? When did the “leaders of the opioid crisis” start being allowed to decide if one’s pain, my pain, is important?
It would appear we are now sliding toward living in a Communist country since it no longer matters to our government the level of
pain one is in. What a tragedy for the great people of this country!

Becky

Let all the chronic pain patients who do not have a life at all and suffer interminable on the 8-10 of the pain scale please try to sign up to vote this election in November and VOTE OUT ALL OF THESE PEOPLE. Read into how many dementia meds are prescribed for these people that are making decisions… they have shown to be uncaring for the sufferers who writhe limp, and end their lives. Would one of these folks in office want medicine if they had Lyme bacteria eat the sheath off their nerves or eat the bone marrow in their bones? Would these people want to continue to turn a blind eye? My daughter lost any form of being able to live after years of undiagnosed chronic Lyme, which causes the most unimaginable pain in bones, nerve pain, on and on. She is not permitted to have medicine to allow her to do daily living activities because of people in gov, most with dementia, others with their own advancement in politics in mind. Why did they get in office because they do NOT care bout the people Lyme pain in advanced stages is worse than cancer. With cancer one lives or dies – gets better or dies – either way suffering has an end. Do we want people in office that made this decision? NO NO NO time to vote them out – this is the only way for chronic pain community to get their attention.

HELLO TO ALL THAT SUFFER FROM CRONIC PAIN, OF COURSE CONGRESS IS GOING TO ACT LIKE THEY DON’T SEE THE THOUSANDS OF PEOPLE WHO HAVE SUCCESS USING PAIN MEDS TO HAVE THEIR PAIN SUBSIDE TO A LEVEL THAT THEY CAN TOLERATE TO AT LEAST FUNCTION AND ALMOST LIVE A FULL ACTIVE LIFE. THEY SEE THAT WORD NARCOTIC! I DIDN’T WANT TO TAKE A NARCOTIC ,THEN AN EXCELLENT SURGEON TOLD ME THAT I WOULD HAVE SUCCESS GOING TO A PAIN MANAGEMENT DOCTOR THAT STUDIED MY SPINAL INJURY FOR YEARS COULD, WITH THE !RIGHT DAILY EXERCISE REGIMEN ALSO A WILL TO GO THROUGH SOME SERIOUS COMMITMENT TO ENJOY SOME OF THE THINGS IN LIFE THAT I LOVE AND HAVE SOME WHAT OF A QUALITY LIFE. HERE I AM TEN PLUS YEARS LATER, I’M A COWBOY ON A STEEL HORSE I RIDE! SOME REALLY PAINFUL DAYS BECAUSE ALL MY LIFE I’VE GONE FULL THROTTLE, BUT WORTH IT, BEATS LAYING THERE FEELING SORRY FOR MYSELF.
LABS,BLOOD WORK DONE 3 TIMES A YEAR REVEAL NO DAMAGE TO LIVER, KIDNEY’S, ECT. IN FACT AT 55 I’M HEALTHIER THAN KID’S YOUNGER THAN ME. SO OUR HONEST POLITICIANS SHOULD LET THE PROFESSIONAL PAIN MANAGEMENT PHYSICIAN’S HELP NON-CURABLE CRONIC PAIN PATIENTS MAYBE JUST A LITTLE MORE ATTENTION TO EVERY INDIVIDUAL,AND ALSO PARENTS & LOVED ONES SHOULD PAY MORE ATTENTION TO CHILDREN,YOUNG ADULTS ON PAIN MANAGEMENT OR NOT. SO STAND UP AND SHOUT CRONIC PAIN AMERICANS! I’M NOT A MEAN PERSON, I FEEL FOR THOSE PEOPLE AND THEIR LOVED ONES THAT LOST SOMEONE TO (ABUSE) BUT THIS BLEEDING HEART LIBERAL [edit] HAS GOT TO STOP! OUTRO, ASK NOT WHAT YOU CAN DO FOR YOUR COUNTRY, ASK WHAT YOU’RE COUNTRY’S BEEN DOING TO YOU! NOT JUST IN THIS SUBJECT, MR TRUMP KNOWS WHAT I’M SAYING, GOD BLESS AMERICA! V.J.T

Ed Beck

Mounds of syringes on the streets of L.A., Seattle, San Francisco, and other cities are not there because for prescription opioids, they are there because of the illegal drug trade. I assure you if the people who drafted this bill faced the kind of day in day out pain that chronic sufferers do they would realize what a Godsend these medications are. They’ve never agonized over to fate of a child dying from cancer and the only thing that give your baby anything remotely close to normal life is the medication that takes the pain away.

Kathy

If they take my pain medicine away from me, I will kill myself. I suffer from trigeminal neuralgia. Right before they diagnosed me I was ready to blow my brains out. Being addicted to heroin and then buying pills on the street and abusing them is a completely different issue then helping people who are suffering! There are millions of Alcoholics in this world but you don’t shut the package stores down now do you? These idiots need to use common sense. I fear there will be plenty of other people who will take their own life. Chronic excruciating pain is not a joke

Susan Simpson

PLEASE IF YOU ARE BLAMING ADDICTS!! PLEASE GO DOWN & READ MY 1st COMMENT, THIS BILL BEING [edit] IF YOU HAVE TO DO SO! I LOVE ALL HERE HELPING BUT I’M COMING AS A CANCER STAGE 4 FIGHTER & RECOVERING ADDICT, REHAB 10 YRS AGO NEXT MONTH! BEGAN W/OPIATES DIDN’T GO TO HEROIN WHEN TOOK COLD TURKEY OFF DILAUDID WHEN CANCER CAME BACK! NEVER ABUSED WHEN GIVEN FOR CANCER EITHER! ANYWAY, I WANT TO POINT OUT #1 IT BEGAN WITH NOT SCARED DR’S BUT SCUM ABUSING THEIR LICENSE THAT DID NEED PRISON TIME TAKING CASH FOR PILLS KILLING PEOPLE #2 LET’S NOT FORGET THE PATIENT’S FAKING THAT PAIN OUT OF GREED TO FLIP THEM ON THE STREETS FOR CASH TO ADDICTS! IF YOU BLAME, CALL EVERYONE OUT!!! KEEP IT 100% REAL DON’T BE A HYPOCRITE! THEM PATIENTS WERE DRUG DEALERS! NOW MY POINT, THE DEA IS TO BLAME & ALL BLAMING ADDICTS ARE DOING EXACTLY WHAT DEA WANT – YOU ARE TAKING THE LIGHT, ATTENTION, HEAT OFF THEM & PUTTING IT ON THE ADDICTS! THE ONLY THING THAT BENEFITS THE ADDICT IS THE TITLE HEADER! IT’S ALL ABOUT SUBOXONE WHICH IS A WONDERFUL SHORT TERM DETOX MEDICATION THEN ON TO REHAB OR N/A & PREFERABLY PSYCHIATRY! TAKE FOR EXAMPLE THE GRANTS THEY MAKE SOUND SO GOOD! A GIRL GOT ONE ON HEROIN – I DON’T EXPECT MANY HERE TO CARE BUT SCREW IT! SHE WAS SICK! SHE WENT THE 30 DAYS & DID IT, WEIGHT UP, LOOKED GREAT, EXCITED, GLOWING LOOKED FORWARD TO SOBER LIVING SO COULD GET A JOB & START LIFE OVER BUT THE GOV’T DIDN’T HAVE A GRANT FOR THAT!! SO WHERE DID SHE END UP – HOMELESS! ONLY 30 DAYS CLEAN BUT TO A ADDICT THAT FEELS LIKE 300 DAYS & YOU GET THROWN ON THE STREETS – YOU HAVE BEEN TOSSED OUT – IN REHAB IT’S CALLED A TRIGGER & HOMELESS IS A BIG ONE ESP AFTER ONLY 30 DAYS CLEAN – SO SHE DID 1 SHOT OF HEROIN & DIED! HAD THE GOV’T NOT TOOK THE FUNDING FOR REHABS GAVE TO DEA TO SHUT DOWN MARIJUANA BUSINESSES PER SESSIONS SHE HAD SOBER LIVING SHE WOULD BE ALIVE – MAYBE YOU DON’T CARE BUT THAT’S A LIFE, THE BILL EFFECTS US ALL, PAIN PATIENTS/ADDICTS

Terri

We as intractable pain sufferers are not being addressed because government officials get pain meds if they want them and because they don’t care if a few thousand people die off that aren’t boosting their career. What I would like them to know is if they haven’t lived with true intractable pain, they should not be voting on our care in any way. That should be up to my pain management team who know my history and see me monthly.

ruththella white

I want Congress to know that the lack of pain treatment became an issue for several reasons. When physician assisted suicide became law in Oregon they searched for alternatives. Studies showed that when pain was adequately treated terminally ill patients did not want to take their lives. Study after study documented that people of color were denied pain medication for their acute pain while whites received adequate treatment. Studies also showed that untreated pain delayed healing. These were some of the reasons why pain treatment became a right instead of an option. These issues regarding pain treatment still exist and will increased with baby boomers aging, more states passing assisted suicide laws and the willingness of too many in this country to embrace racism.

How many of you, besides myself have called for an appointment for a new doctor and upfront asked (before making appt.), does your facility treat chronic pain patients, I have been on 2 controlled medications for 15 years? Half have said no, the other half says yes…. until you get into the office and THEN they give the line “we do not prescribe”. Guess what, my insurance has been billed for a new patient appt. which is equivalent to what? 3-4 15 minute regular office visits. I believe some facilities/doctors are taking advantage of insurance companies at our expense as well.

I had one doctor say what is happening to especially long term pain patients…is uncivilized and for many nothing else will work for us after years of opiate treatment.
I believe that it is vital that everyone writes a letters to family, doctors, & government officials who may eventually reach the point that they can no longer live with the pain and suffering and I pray change will happen before anyone does. The families may be in too much grief or for other reasons may not want it known. Suicides that have already occurred and any that may follow MUST be acknowledged and made a statistic (unless life ins. is involved) though most of us cannot afford life insurance with the health conditions we have.

Rich Reifsnyder

Hello,If this government cared for us at All it would document all the Suicides of CPP,S and Veterans that died from being reduced or cutoff their pain medication.I would truly like to see how many Veterans and Chronic Pain Patients with legitimate prescriptions and Pain Contracts to take Opiod Medications for intractable Chronic Pain OD and Died from taking their Opiod Pain Medication responsibly?And not throw in the report the deceased had snake oil,Heroin,Fentynal and every other compound in their system.The government does not give one rats $$$ about 100 million of us CPP,S.They raided the Social Security Fund for years and do not have the Money for Us Baby Boomers!! If pain medication is taken away from a person there is a domino affect,high blood pressure,insomnia,depression,anxiety,strokes and death.There are a lot of posts I read over the years about this issue,and I truly believe it now,they want us gone!!I guarantee if you were a Senator or Congressperson or their family you would have no problem getting pain medication.Something is really wrong here,we are talking about 100 million people suffering inhumane torturous pain.You can bet your sweet $$$ The government knows it’s the Heroin and Fentynal killing all these people not us giving them our pain medication we look after responsibly,we don’t have meds anymore they took it away.Karma,s a bitch she will come back and bite you hard.I pray that for all our brothers and sisters suffering and dying from this travesty it will come out in the end and all who caused this inhumane suffering will be prosecuted for crimes against humanity.There are 350 million people in this country and not One Lawyer will stand up for 1/3 of the population,totally disgusting.We Vote in November!!!

Nora Byars

Chronic pain and opioid medication issues do not belong or need to be included or anywhere in this publication. When opioid medication is taken as prescribed for chronic pain there is no addiction. When a chronic pain patient takes opioid medication there is no high. I have been on opioids for NET’s, MET’s, and neuropathy for years. I take no more or less than I did when I stated eight years ago. I do not get high… I only experience pain relief. This is what a chronic pain patient experience is with responsible use of prescribed pain killers. Everyone is not out to get high. Lock your meds up!!!!

Nick

Everyone, it’s all part of a bigger plan to keep everyone in this country sick and dependent. Report after report after report is now saying everything from vitamins, fish oil, low carbs, aspirin, coconut & olive oils, supplements etc. as being bad, to eating red meat ‘hasn’t proven to be harmful for cardiovascular disease and veggies are overrated'( no, I’m not kidding). Isnt this suspicious to you, that all of a sudden these reports are now coming out.Taking away the opioids is part of the overall plan. The government does not, and never will, give a damn about ANYONE in this country; it doesn’t serve it’s agenda to do so.They had to come up with some sort of a reason to limit/terminate the pain meds, and they did, bogus or not.I’m so sorry for those of you who suffer pain. My heart goes out to you. Stay tuned everyone, because this is just the beginning.

Mavis Johnson

Give it up, Congress is not teachable. They believe whatever the big money interests tell them this week, even if it conflicts with facts they heard last week. This little stop gap, Bill, was done, only to give the appearance they did something. Some of this should have been in the ACA, but certain special interests made sure they weren’t. This was just another example of the corruption, greed and stupidity, running rampant since or democracy was sold to the highest bidder.

the comments on the WaPo articles were more interesting than the article. it looks like no one reads them, certainly no one at the WaPo. The misleading propaganda about this issue, spread by our news media, has given Congress, and the people who profited from this a lot of cover.

Leticia

At this point I truly believe chronic/ intractable incurable pain patients have been selected for extermination.Our whole community have be fighting, calling, emails,letters,Twitter and more to let policy makers know what is happening to us and they don’t care.They continue to push false data and target life giving medications we need so we will eventually give up and end it all.Patients with rare incurable painful diseases are suffering needlessly and not just them but their entire family. So many have lost ability to support themselves and can’t even get out of bed.More and more doctors are giving into the hysteria and not fighting for these vulnerable patients who do they have left?The most important thing that needs to happen yesterday is that nationwide pallative care must include intractable pain.The term life limiting needs to be revised to include people with intractable pain no matter if they are working,housebound, bedbound and so on.All doctors must have the power to exempt to meet the enormous need.Due to fact there are not enough pain doctors or pallative care providers to meet the need.

Crystal

WHY are we, chronic Pain human beings , BEING denied pain relief? We are NOT ADDICTS ! ADDICTS OVERDOSE AND USUALLY DIE.!
Addicts will find another drug off the streets, like crack or paint or whatever they can find to abuse and get high! Those of us with proof of chronic pain, DO NOT GET HIGH! I REPEAT DO NOT GET HIGH! We are being clumped together with drug adcicts! Insulting! Why ?
If im denied pain medicine from legitimate doctors, what am i to do? I wont be able to work, thats for sure! Goverment doesn’t care about the taxes i pay that they will loose if im unable to function? Is this population control in hopes we do die? Are they smart enough to realize that some of us will commit suicide rather than suffer with chronic pain? I have already lost a close family member who when went to his monthly pain management specialist found them closed. So he committed suicide because he couldn’t find another pain management specialist, and he had colon cancer! Shame on those of you attacking chronic pain patients! I believe this is about money. I know that its about someone who had a addict family member who killed himself by over taking medication and died, so they think its the pain medicine that caused the death! Its not! Its because they were addicts! They would have got high off any thing they could get there hands on, from the streets if they had to! Where is the law making crack, heroine , and other illegal drugs to stop? This action making legal pain medicine s illegal will cause more deaths and more street drugs popular. STOP THE STUPIDLY!

Connie

Since no one will probably read this, I’ll be brief. Why do legitimate pain patients have to suffer because of addicts. Obviously, you have not experienced severe chronic pain. These people will probably commit suicide rather than live in pain. More people die from alcohol related accidents (drunk driving, overdose, etc.) and lung cancer from cigarettes. What are you doing about that?

cindy

continued from prior post:
I also know that the only reason I am still alive is opioids. Without them, I would have killed myself years ago. The unending pain is too unbearable.
Also, I”ve been told that my dosage is pretty low. I’ve never been able to get more that I get, and I wonder that if I did get more, if I would have had to stop working and having a life.
OTOH, if I do have to get tapered to reach 90MMP or whatever that new standard is, I guess I won’t have too far to go. Although, since I’m so housebound now, I can’t imagine it getting much worse. Any worse and I end up in Assisted Living — and at age 61, even with LTC insurance, I don’t have decades worth of that insurance. So then it’s forced suicide or dire poverty plus the pain. Great choices.

cindy

I have tried lots of different non-opioid meds for my pain. I’ve also tried some electrode type treatments. And PT. Anything I was told was available. Nothing works except opioids. And even with them, I had to stop working when my acute chronic pain began 10 years ago at age 52 after my hysterectomy. Lots of days, I do nothing but lie around with a heating pad. On a good day, I can take a shower and do laundry. Once a month, I force myself to get to the pain doc to get my monthly Rx’s. Sometimes, I cancel and need to reschedule due to the pain. Then I need to get to the pharmacy once a month, which is always difficult. These outings are basically my life. I have no life. I can’t meet people or make friends b/c I can barely go out. I literally can’t sit up for any length of time, or stand. I drive, but not far, and only when I feel well enough to drive the short distances for medical appointments and needed errands.

Jeff Sessions’ war on medical marijuana — a drug which CANNOT kill anyone by an overdose — makes zero sense in light of the gov’ts war on opioids — a war the gov’t has taken on b/c white people are the main victims. If they were black, then the gov’t would just throw them in prison like with crack cocaine. There absolutely is racism involved in all the concern for the opioid victims.

Why pain patients are so ignored and left to suffer is beyond me. I have a friend who is a conspiracy theorist and who believes that the world elites want to kill off the rest of us. She believes that Monsanto and GMO’s are a deliberate attempt at doing just that. I’ve always scoffed at such beliefs, but maybe to a degree she’s right. Maybe American elites do want to get rid of us chronic pain patients who are weak and on Medicare before age 65 and maybe get other gov’t assistance. But, we do vote, and they should remember that.
continued in next post

Laura

I feel that there is no way for our legislation to even begin to understand the effects of chronic pain. I had a very normal life until 3.5 years ago. I also didn’t ever believe this type of pain exists until my injury happened and I developed CRPS type 2 that has spread to other limbs that are CRPS type 1. Until it happens to you, there is no way possible for any amount of the impact it causes on an individual and their families. Chronic pain causes more that just physical changes in ability to function. It also causes dementia. Yes it causes structural changes in the brain that effect every aspect of daily living. To leave chronic pain patients (Human lives) to go untreated will only increase long term social security disability. Where is the focus on rare diseases (are they really that rare with multiple name changes of a condition over 100 years)? Where are we implementing alternatives to opioid’s? If legislation could live one day as a chronic pain patient without medication opportunities for pain and alternative treatments…..only then will chronic pain patients start to be recognized. Or maybe not because they likely wouldn’t have to go without opioids or other treatments. The daily struggles of physical ability and cognition struggles are extremely debilitating and further awareness needs to happen before we have a suicide epidemic. I realize the opioid crisis is real within our country, but so is chronic pain. If fentanyl is the main drug issue in our country then remove it and offer less powerful. As a pain patient I don’t want to take pain medication every day and I try not to. In higher pain times it does help me to be able to physically move better. It is hard enough to be trapped inside a defective body and to be untreated for pain in our country in only one word. Inhumane!

Holly

What more can we a say? We have written all about our conditions, our PAIN, we have called Senators, Congressmen, Governors and for me all I ever get back is the old form letter saying we will get back to you. HA! When? After I am dead?
I now sit here and cry every day morning. I have NO relationship with my Pain Dr. who does not listen to me, brushes off my MRI’s and CT scans. Her goal is to get me under 200 MME’s or lower no matter how many meltdowns I have had in her office. Ever since the CDC guidelines came out it was a complete turn around in the way I have been treated. She wrote my same prescriptions for over 3 years and now cutting me back is for my safety?? I have been on the same dose for over 10 years now. Before that it was smaller doses since 1992. My pain got worse, not tolerance. I have tried 2 other Pain Dr’s. I literally walked out on the last one. All he did was drill me on who was giving me meds, why did I need to take them….um hello, read my records I brought to you!!! Unreal.

This whole “opioid epidemic” is so full of lies and corruption!! INVESTIGATE!!!!

I cannot believe this is America!

Jason Cook

This opioid epidemic resembles Saul Alinsky’s rule 13, “Pick the target, freeze it, personalize it, and polarize it. Go after people and not institutions, people hurt faster than institutions. Judge not lest ye be judged, but someone going to join Saul in hell for this.

Sheryl Johnson

Doctors are taking these so called guidelines as mandatory. It’s not right what cpp have to go through. Government should NOT be in our healthcare. One size does NOT fit all. Our Government is unhuman and is torturing chronic pain patient. We don’t matter. I’m tired of being in pain 24/7. I have been on the same meds for 20 years with no problems. Then these guidelines come out and my dose was lowered to half of what I was taking. now it’s hard for me to function on a daily basis. I’m not the only one. Millions of people are in the same boat. Why are our voices not being heard?? I want answers!!! I’m tired of being shrugged off by our government!!

Lori T.

What do I think? Well…I can’t make a better argument than many of you have already written. I do think we as chronic pain sufferers will eventually end up having to make one of two choices. Live in pain for the rest of our lives or get busy planning to take our leave from this planet. Peace and hope to all who find themselves in these terrible mess.

Susan Ulrich

Hi. I live in Michigan, where a draconian ‘7-day’ opioid law has just gone into effect. I have had chronic pain for 17 years and am currently prescribed an opiate medication by my pain clinic doctor. It has been near impossible to get my new script filled because it is for more than 7 days worth. The insurance companies are using this as an excuse to tag opiate medication and tell their customers they need prior authorization to have them filled – for relatively inexpensive drugs. I finally went in and paid cash for my script rather than jump through another gauntlet. So yes, the chronic pain patients are the ones feeling the pain (pun intended) of this sweeping legislation.

Rich Reifsnyder

Hello,This has now turned into a Suicide Epedemic.This whole issue is Biased from the start with the Guidelines in 2016.Dr Red Lewhern asked the HHS to investigate the CDC for Malfeasance of the 2016 Opiod Guidelines.I would ask for FBI,HHS,GAO,And every agency to investigate the CDC,DEA,PROP for Malfeasance,Lies,Fictitious OD Deaths,Suicide numbers from CPP,S and Veterans cutoff their pain medication.Also investigate how many CPP,S with a legitimate prescription for Opiod Pain Medication on a Pain Contract OD and Died from just their pain medication in their system,not Heroin & Fentynal thrown in as usual.All the Senators And Congresspeople have invested their own money in Addiction Centers such as PROP and invested in Big Pharma for addiction medication.So I don’t know if we could ever get an investigation that isn’t Biased.Most all Senators are multi-millionaires and congressspeople are taken care of by lobbyists and Big Pharma.Iam 61 and disabled from 3 failed back surgeries with severe nerve damage.I have been taking Opiod Pain Medication since 1999 and had a decent quality of life up until 2016 when I was forced and my pain meds were decreased from 160mg/day to 60mg/day I just barely get by now.I cant comprehend why myself and millions of CPP,S and Veterans are suffering torturous Inhumane pain with suicides going up and yet we are still not listened to just called drug seekers and junkies!!What is really going on?You have a 90 year old lady crying in inhumane pain and Jeff Sessions tells us to suck it up and take a Bufferin!!!But we have Safe Places for Heroin Addicts,Free Needles,And a Guardian Angel with Narcan standing by in case they OD.Chronic Pain Patients like me got hurt in a workplace accident or have a disease we didn’t ask to be in intractable Chronic Pain and suffering because of the CDC Guidelines.Thousands of Veterans and CPP,S committed suicide and millions of us CPP,S are suffering torturous pain because we were cutoff our pain meds.Why?

Jay

What do we want Congress to know about our chronic pain????
ED…really? We have told Congress how we feel. Our pain, our suffering, our obedience to the laws ie: doctor prescribed medicine, signed contracts with doctors and pharmacies, urine test every month, pills counted and random urine test in between appointments. Using non- narcotic medicine and other therapies. And we tell them about how messed up it is that we have to eventually make a decision to take our life because we cant go on any more with the pain. THEY know all of this and don’t care so much that they tell the media to only report the epidemic part of the problem, to put us in the same category as the heroin addict.
And sadly the people of America believe every word of it. Social media has proven that. The horror stories I read about the treatment we get from ER doctors, nurses pharmacies and the law. So what else can we say to Congress….Nothing…. our complaints dont even reach them our calls and letters more than likely get trashed. They want us gone and they are and will win.
God Bless the Pain Warriors.

Jamie

If you’re going to basically outlaw the only means of making my life livable at least deregulate marijuana. Texas is so against medical marijuana because of Cruz and Cornyn and the rest of the Republican controlled state legislature that chronic pain patients are forced to take opioids. We have ZERO choice in the matter even though many studies have proven that opioids aren’t the best choice for us and marijuana is a better choice for both chronic pain and for treatment of opioid addiction. Yet so many republicans refuse to acknowledge the science behind this. They see a problem and nothing else. They refuse to see the ppl they are victimising with their harsh and incomplete laws. Hell, many street drug users were chronic pain patients forced off of standard treatment plans by outrageous and thoughtless laws created by ppl that have never had to live with 3 slipped discs, arthritis in every joint, daily migraines, IBS, fibromyalgia and more. If they had to live with this pain for even a few days they wouldn’t dare pass such laws. They’d beg for less regulation like they do for all other industries. Only marijuana is regulated to death bc big pharma donates heavily to GOP campaigns. Makes me even more physically ill than I already am. I hope as these old men age they ache more than I do.

Janice ,
I applaud your comment. I have been living with chronic pain from Migraines and now Rheumatoid Arthritis, along with GI problems, scar tissue, etc. I have taken Butorphanol Tartrate NS for 23 years and now the new laws have made it almost impossible to get my medicine. I have currently stopped all treatment for my many ailments because I am sick and tired of the needles and medicines that make me so sick. I am in Palliative Care and next step is Hospice, which my Doctor has sent the referral. My pain has taken me to another level of where I can no longer do what I use to do. I feel ashamed when I pickup my medicine and I have given up. I pray that someday soon the chronic pain sufferers get the help they need.

Mark

My name is Mark and have been suffering from pain now for four months straight because Dr’s refuse to give me pain killers! I have MS and recently type 2 diabetic and a number of bad disks in my back! I have diabetic nerve pain so sever I can’t sleep or lay down for more than a few minutes at a time been to four different Dr and so called Pain Dr. And get no relief from any of them! But Ive noticed they all seem to get paid by SSI for telling me their not going to help me! So what I’m I to do??? I have never been arrested for drugs or selling them and would love an answer to why I have to suffer day after day?