Next Up – Federal Pain Management Task Force Meets in Washington

Next Up – Federal Pain Management Task Force Meets in Washington

By Ed Coghlan.

The chronic pain community is putting September 25 and 26th on their calendars.

Those are the dates of the second meeting of the Pain Management Best Practices Inter-Agency Task Force in Washington D.C.

The Pain Management Best Practices Inter-Agency Task Force was established to propose updates to best practices and issue recommendations that address gaps or inconsistencies for managing chronic and acute pain. The U.S. Department of Health and Human Services is overseeing this effort with the U.S. Department of Veterans Affairs and U.S. Department of Defense.

U.S. Pain’s National Director of Policy & Advocacy, Cindy Steinberg, is the only patient and advocate appointed to this federal panel. We asked her for some comments prior to the meeting but she said that the Task Force has asked that members not individually speak with the media yet.

If you aren’t going to Washington, you can still watch the meeting on a webcast. (Here’s a link)

By the way, the meeting which will convene in the Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. – is open to the public but registration is closed.

The public comment period closed on September.

For those advocates and members of the public already registered, they will have an opportunity to provide comments at the meeting September 25th. But they are receiving only 30 minutes (from 9:20 a.m. to 9:50 a.m.). Since comments are limited to three minutes per person, probably only a dozen people will able to comment.

This meeting is being held in September which is Pain Awareness Month.

Earlier this month the Centers for Disease Control published a study that claims chronic pain affects about 50 million US adults — and what it calls “high-impact” chronic pain, (others call it intractable chronic pain) which interferes with work and other activities, affects around 20 million,

By the way, other studies and data have put the chronic pain number at double that number.

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Authored by: Ed Coghlan

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Schindler

Pain Awareness Month is over and nothing has changed. Here is a sample of the life of a pain patient:

A extremely traumatized pain patient whose symptoms obviously did not match her diagnosis was left to starve in her hospital bed for three days. This happened in a local hospital with a good reputation. The patient had diarrhea, weighed under 90 pounds, and was at least 40 pounds underweight. Her diarrhea was not addressed at all, and her inability to eat solid food without extreme pain was completely ignored.

She had many symptoms of Hyperthyroidism including the results from a previous test, and they did not test her TSH. She was given a CT scan, but the areas where her pain was most severe where not imaged.

She suffered from frozen shoulder. This was ignored and her shoulder was injured and lost mobility. Despite the fact that the patient had PTSD many of the hospitalists seemed to go out of their way to be cruel to her.

She attempted to hire her own patient advocate. One of advocates she contacted said that she was too “moral” to work with a pain patient. This advocate then told her to kill herself.

John

The best product that I have used after back surgery was actipatch from Bioelectronic. This is the new pemf product for pain relief without using opioids. Didn’t use a pill. The pills were perks

tom

Actipatch – drug free pain relief with no side effects. Already partially cleared by FDA for knee and foot. Waiting on, and have applied for full clearance. Make Actipatch the new Standard of Care for the front line against chronic pain and surgeries, too.

Sandy

We separated church and state now we need to separate medical and state.

Paige

I’ve got CRPS, back problems, arthritis, Fibromyalgia etc. I’m on pain medication and I’m still in so much pain due to reduced pain meds. I feel suicidal every SINGLE day. Please help. I can’t take this much LONGER. I’m COMPLETELY disabled and on disability and I’m suffering. I feel like they’re TREATING ME and all chronic pain patients like 2nd class citizens…please help!
Paige

paul

Does the CDC & FDA have any idea how many legitimate chronic pain patients have committed suicide because of the guidelines? I have tried everything. You have taken away the only med that worked. I have never once in my life considered it until recently. If I can’t get relief soon it’s my last option. It seems like no one cares about me or countless others in like me. It’s not addiction it’s PAIN! Relentless Pain. We need help NOW!

Paige

I feel like they’re TREATING chronic pain patients like 2nd class citizens and I think of suicide so much…

Angel

When did the government give itself the right to determine care & prescribing protocols for American patients?
Where is that enshrined in the constitution & why aren’t doctors angry that non physician bureaucrats are making determinations on their patients care?
How is any patient going to trust a medical system that causes them direct harm and looks away while they suffer?

I used to believe the marginalization of pain patients was a scape goating of the open border drug crisis, I now believe it’s something much more nefarious. Pain patients are a collective group of the diseased elderly disabled & dying, the one thing besides pain they have in common is they use medical resources more frequently than others. Could this be cost savings & profit all around?
By refusing patients effective inexpensive pain meds pharmaceutical companies are able to sell newer patented very expensive drugs instead.
By refusing pain patients effective pain care corporate & government insurers see their costs go down as patients exit care through death of sheer frustration
By blaming physicians & pharmaceutical companies for an illegal drug problem jurisdictions are able to sue for billions, politicians take no blame for the open borders illicit drug problem & private special interest group receives billions in anti opioid tax $$$

Essentially patients are the only ones not benefiting from this big lie

Nesi

Until a class action suit is filed no one is going to do anything unfortunately. We will continue to suffer. Every. Single. Day. Pick a leader then get on board.

well I have chronic pain I have 3 cyst on my spine nerve damage in my lower back and a bulged disc in my neck and I have to have my pain meds

Allen Harvey

The thing that doesn’t make sense to me is that drug addicts can go get opioids (methadone, Suboxone, etc) with no limit on the Morphine Unit Equivalence (MUE) but a chronic pain patient is limited to 90mg MUE. Why give the drug addicts that have an admitted problem with opioids large amounts of opioids but give little to none to the pain patients especially when addiction is the main reason there’s an opioid epidemic? I would think if one would want to stop the opioid epidemic that they would target the problem people and get them off opioids all together instead of having them trade an illegal addiction for a legal one. Pain patients aren’t the problem. If the epidemic is in part to people being prescribed opioids for pain and then being taken off them(which all the current evidence provided by the CDC and other studies proves otherwise) why in the world would you take people off the medicines that they’re already on without providing safe effective alternatives? Opioids when taken properly are safer than almost all other medications available either by prescription or over the counter. They cause less harm to the body than NSAIDS (like ibuprofen or naproxen) or acetaminophen (Tylenol) but yet those drugs are available with little to no restrictions at just about any store. Opioids have been used safely for thousands of years to treat pain. Opioids can be addictive and should be monitored but less than 2% of patients using these medicines misuse them. It’s sad that in these modern times that decisions like this are being made off of emotion and feelings instead of science and reason.

Kelly

Someone who really needs the meds for pain does not get “high”. It controls the pain. My husband and others like him should not be treated like a “seeker”. They are just trying to get by in life and be able to handle activities of daily living.

LisaB

OBVIOUSLY LADY (Mary Finn) you have No Pain issues.. Crawl back I your hole & come out when you can’t sit,stand,walk, or Live Normal Because Of PAIN In YOUR BODY DUE TO ACTIONS BEYOND YOUR CONTROL!!!!!!!

Veronica Vaughan

I have RSD or CRPS ,Fibromigia,5 Herniated disc,2 torn rotor cuffs ,2 torn biceps,OA and RA all over and other health issues for the last 18 and a half years.I am on pain meds and still in pain.I sometimes feel that I should end it when sometimes my pain is way out of control.Why are we the ones with real pain get penalized because of these druggies.They steal and buy and sell it to get a high.I need it to live with. Not to get a high.If you take your meds as prescribed there would be no problem. Even if you are on pain meds it doesn’t get rid of all your pain it just helps with it. I’m still in pain even with the pills.I just can’t believe that we have to suffer. This isn’t fair. Help the real victims . Please help us . Make some type of something that could help people in chronic pain . Thank you!

Bobbi ferreria

Please help us that are in terrible pain. We are not selling or misusing our meds. Doctors have NOT been able to help us. We can not live a normal life without them. Please help us that are suffering in pain.

Roberta

Speak for me!

Cathy Briggs

Life without opiods means the difference between me working or the government supporting me. Was on Norco for 10+ yrs and had zero withdrawal symptoms. Only the suffering from severe pain daily doing the simplist of tasks without the Norco.Have been in 2 bad accidents and have severe scoliosis and now ankolosing spondylitis in my neck. Approx 20 surgeries and 20 broken bones. Temptation to find heroin or fentynal on the streets occurs often, tho i have not acted on it due to not knowing how.

Cathy Briggd

My life consists of laying in bed recovering from any minor activity i must do since being taken off opiods. Tried many alternate methods and none that bring back quality of life. Had been on same dosage of Norco for 10+ yrs and no symptoms of withdrawal when removed. Without the government supports me, with i work and support myself.

Nancy

I also suffer from chronic pain. I have osteoporosis, and have compression fractures in my vertebral column. I have an artificial disc in my c spine, at least 2 thoracic fractures, spinal stenosis, and degenerative arthritis. I need my pain medication. Yes, I am tired of being treated like an addict. I have all the history and tests to prove my injuries, yet I have to worry about getting cut off my medication. Just because some people abuse drugs, I have to live with chronic pain and be treated with disdain.

Marie Gonzales

Im In Pain all day all night
Interferes with my daily activities even with my sleep either to much sleep or none at all… I have Mood Swings, Depression, trouble with concentration, Pain has effected My health in all Different ways… I have applied for Social Security & have been denied 2× in front of Judge, Which I Think Is [edit]!!!

Clarence Longacre

My Dr at my regular Dr office charge less than the pain manamen and still give me opioid at 1500 dollars a visit my and I see them total of 8 min my Dr charge 127.00 dollars and I get a check up boold test and in there longer this pain management is I scam but I’m made to go there and all I get is my pills

Dawn Wood

The name for withholding chronic pain treatment is torture. Acupuncture helped mine and if doctors don’t prescribe direct treatment for pain they are at cause for multiple dignity lawsuits. Send complaints to Dept of health and human services in Washington DC.

Adrienne Stone

You know what, the concerns over opiod use, especially when it isn’t necessary, are completely valid. In many cases, pain can be reduced and managed with physical therapy, non-opiate medications, biofeedback, etc… Here is the problem: ALMOST NONE OF US HAVE ACCESS TO OTHER THERAPIES. My insurance doesn’t cover the physical therapy I need to relieve my pain and I CAN’T AFFORD THE PREMIUMS for insurance that will cover all those alternatives.
So, before you cut off the only option a lot of people have access to, why don’t you make those alternatives as easy and affordable as the pills?!? I would be on disability without medical marijuana and even that is hard to get and expensive… you’re failing us.

Donna B Miles

I have suffered from chronic pain for years. I have chronic pancreatitis, diverticulosis, Hep C from a transfusion in the 70’s but didn’t find out until 2003. I have had a gastrointestinal bleed for over six months and no doctor knows where the blood is coming from. I have had 37 major surgeries starting at the age of 9. In the past two years I have suffered a broken kneecap, a closed compound break in both bones in my left arm. A broken sternum, a broken hip and a broken pelvic bone. I had a complete shoulder replacement on my left shoulder in May of this year, (I had my right shoulder completely replaced almost 5 years ago). I also have the worst case of scoliosis many doctors have ever seen. I went to the emergency room recently because my diverticulosis had turned into diverticulitis and was doubled over in severe pain. The doctor said all she could give me was one regular Tylenol. I refused it. I’m not supposed to take Tylenol because of the Hep C and I can’t take Nsaids because of the gastrointestinal bleed. So I live in pain constantly. I can’t sleep because of it. I have no appetite and my weight is down to 101 lbs. from 111 lbs.
I also suffered 2 heart attacks in March of 2016, a week apart and now I have congestive heart failure. I also have survived Hogkins Lymphoma when I was 22-23 and breast cancer in 2008.
You need to make pain meds available for people who suffer this kind of pain. I’m not addicted, I’ve never given away or sold my pain meds when and if I get them.

Thank you for your time and and God bless you and your family.

Donna B Miles
Lyman, South Carolina

Use kratom for chronic pain it has no opioids An has some benefits for depression it is not addictive. I have rheumatoid arthritis fibromyalgia An ulcerative colitis An hardware in my lower back. I am 67 an I feel 10 years younger an able to keep up with my 3 great grand children

Elizabeth

All I have to say is that I became disabled 20 years ago while I was doing my nursing visits my entire back was blown out I have had a total of six surgeries to try and repair the damage I’m 60 years Young and I try to be somewhat active if the government wants to step in and take away my pain medication I will be forced to live a life in bed. What I would like the government to look at is the amount of overdoses that they keep referring to is not from prescription medication it is from heroin and Fentanyl Lowe’s two types of drugs need to be looked at separately I have to take pain medication I’m not out there shooting up heroin. So they need to get that straight I know cancer patients that are suffering in agony because the pharmacist does not feel comfortable filling their prescription. Also what I don’t understand is how does a pharmacist have more control over my medical treatment then my physician how does a pharmacist have more power then my physician who has known me for years. I can understand if a pharmacist notices that two separate prescriptions would not be compatible that would be totally understandable but for a pharmacist to be able to override a physician makes absolutely no sense at all. I think this whole situation has got blown out of proportion yes people are overdosing but they are overdosing from illegal drugs this entire subject has nothing to do with the federal government or anybody else for that matter except the trust and confidentiality that I have between myself and my physician it’s just as easy as that. In the state of Florida they have developed a system to find out if patients are Doctor shopping if patients are doing anything illegal and that’s fine but for the patients like myself I’ve done nothing wrong and if they take away my pain medication I will have to give up custody of my six year old grandson I’ll have to give away my dog and more than likely I will have to move into a facility where they will be able to help me get out of bed clean cook for me because without my pain medication I will become an invalid and it is Nobody’s Business except between me and my physician thank you

John dow

Remove trump from are country he is the one that’s making us suffer through all of this he’s the one that signed the pain medication to be removed from everyone I suffer from chronic pain everyday it’s just not fair yes my doctor is already acted whatever Dr Donald Trump says why can’t doctors just to their job and not have to be dictated by somebody that didn’t go to school for 8 years and end up with $100,000 bill that they have to pay that

I am s intractable chronic pain patient I didn’t chuse to be to be in this club by no means! It chose me at 40 and has destroyed my life every since! The only gift sent from god is my life saving pain medicine that has allowed me to regain a great amount of my life and keep me off the suicide list .until the CDC and the other govermeant decided to illegally put out misinformation and outright lies called the fake opiod hoax! So instead of being intractable chronic pain patients with horrible pain medical conditions we are treated as criminals and low class citizens and abused at every angle!! Our life saving pain medicine cut to nothing and what quality of life we had destroyed!, now that just wait to see how long we can stand the horrific pain and end up on the extremely long suicide list!! America have lost their minds and all compassion for disabled chronic pain patients period!!!!!in Christ we trust amen

christina kessler

I live with chronic pain everyday and night. i never sleep a full night without tossing and turning. its horrible that so many people who actually NEED the pain meds can’t get them. .

Billy

How many deaths will come from suicide when people cannot handle the pain they are in ???? . I read somewhere that it is something like 4 out of 10 commit suicide from pain will it 9 out 10 .. will the people in Washington be happy then ??

Riley

I’m 36 and use my pain medication exactly as prescribed. I don’t like feeling “high” which is why I don’t drink alcohol at all. I’ve had back surgery, two hand surgeries and suffer from ovarian cysts, which feel like labor pains. The degenerative disc disease on top of debilitating menstrual cramps is the worst pain in the world and I wouldn’t wish that on anyone. Thanks to my norco prescription, I can function when I can’t manage the pain via CBD treats, massage, yoga or my TENS device. I receive 20 pills a month and never abuse them. On days I don’t take my pain medication, I don’t suffer from withdrawals or any addiction symptoms. Please don’t take away people’s prescriptions whom use it responsibly. I have a full time job and am a functioning member of society but if I couldn’t get my prescription, I’d be bed ridden in the fetal position on bad days when pain is not manageable by other options. Ibuprofen makes my heart race and hurts my stomach so that’s not an option. Most people that are addicted or overdosing are NOT doing so while under the care of a physician. Cutting opioids from practicing medicine will solve nothing. It will only give certain people a facade of something being done to solve a much more complex issue.

Max

I won’t uae.a.lot of space here, but chronic severe pain that stems back to an injury in combat in Vietnam. Have been totally disabled for 24 years now, partial work for 5 years before then. Prescribed a small.daily dose of.oxymoron for last 15 years through the VA. Just enough to survive, never wanted.or.asked for an increase since I could spend a good deal of time in bed. Lost my VA doctor a year ago did to his transfer. Every possible pain relief procedure.was tried, many nerve blocks, many steriod.shots, n-saids until chronic kidney disease, many physical therapy visits, many accupuncture visits, surgery, chiropractor visits, massage therapy. At first visit with new 1Star rated doctor at 1Star rated VS Hospital was good that it was” not the goal of the VS to alleviate pain caused by combat related injuries, that only death would alleviate pain. ” Was told.plan was to totally Wean off the only thing giving any relief, the low dose of pain med. Disagreed with that and was told.to go to a private pain management clinic where I was.good the VA plan was just stupid, so now paying out of pocket for treatment of a combat related injury…the we care for our disabled veterans VA and government was made happy. They have fooled the public, billions on remodeling, bonus’s, and last on back of employees who delay and deny. Veterans know what is going on and one day those who are asked to fight will know and will not be willing to.sacrifice all.for.a.nation that just does not care. Sorry I went over, it’s 2 am and pain is real!

Tina

I’m so proud to see so many people share their stories. I’m very sorry for the suffering. I suffer greatly from pain everyday myself. I am sadden by the stories that share the horrific judgement put on them by physicians. I’ve had that happen to me in the ER a couple times and I remember crying for weeks. It was so personal and I couldn’t understand why they would treat me like an addict while I was laying in a fetal position passing kidney stones in so much pain that I was losing my mind. The second time it happened I literally crawled out of the bed, phoned a friend and had them come pick me up and take me to another hospital. The emergency squad had brought me in. I was treated promptly at the second hospital. The 3rd time I was denied pain relief was after surgery. I had gone home after surgery on my kidneys and something was HORRIBLY wrong. Rushed to the ER in severe back/kidney pain. I was left crying for hours on my bed. I cried so my, so hard for so long. The bottoms of both my lungs collapsed. They induced me into a coma and I was on a ventilator for 3 days. Non of which I remember but all of which could have been avoided. I constantly have kidney stones pass to this day. I have herniated discs, bulging discs, arthritis from the top of my spine to the bottom. My hips and knees are now giving me problems at the great age of 50. Unloading trucks. Carrying rolls of carpet and heavy furniture is not an ideal job for a woman. I have to admit I have a VERY GOOD pain management doctor. Unfortunately I have watched many of my friends who are in pain and desperately need medicine for their pain to work and pay bills every month. I’ve seen them sick from being cut off. Loose their jobs. Some their minds and some their lives. I would absolutely love to sign a petition if anyone wants to start one. I agree the government has NO RIGHT to butt into the medical profession. Makes me angry. I don’t know if anyone has gotten this far into my post but if you have and you have a story. Please share. Blessings to all suffering.

Karen

I am concerned that those of us with chronic pain, who are paying the price for current idiotic government regulation, will have to continue to hurt as we watch those without pain decide what is best for us. Those who know best have made life miserable for chronic pain sufferers, AND addicts are dying in droves or straining their communities’ resources to the breaking point in efforts to keep them alive. Big Pharma, Congress, and other dope pushers are raking in the money; our law makers in Congress pat themselves on the back for their continuing war on drugs; and people in pain are treated like criminals. Please, just don’t make things worse for people like me: 75 years old, with spinal arthritis, osteoporosis, and compression fractures occurring faster than I can get them “super glued.” (And some can’t be repaired, at all.) I really fear what new “best practices” this “task force” may dream up when they all gather to figure out what to do to us next. I’ll wager that if the members of this “task force” and of Congress felt daily, tear-producing pain when undertaking such strenuous activities as sitting, standing, or lying down, their recommendations and the law would change in record time.

julia saavedra

Please here the real people who are chronic patients not the people that are using medication for recreational use or even using it for the first time.Those are the people that die.Not chronic patients that have being using there meds.For a very long time and have a real medical history.One year of me d ical history is not enough to recieve any kind of narcotics meds. From any Dr.

Diablero

I was in the army served my country all the while adopting my younger brother who had 12 surgeries before he was 18 due to our abusive father my husband was shot 3 blocks from the house he was raised in then I have my one and only car accident not my fault the tractor trailer driver fell asleep and hit me distorying my spine. Not one of my family has been treated like a person every one of us has been treated like a addict when all we want is to live something that resembles a life. They need to see us and hear us but that would be to much to ask for.

Billy

If you have a legitimate reason with medical evidence like x-rays, mri, etc, which support your claim you should not have to be looked upon as a “drug seeker”. No doubt, there are lots of people that just like to get high on opioids, but I need, not want them, for my chronic pain. I would rather be user something that works better and is completely without the risk of overdose, i.e. marijuana, but I live in a state that doesn’t allow it, so until they do allow it I am stuck with pain meds, and since the big opioid epidemic it has become increasingly more difficult for me to get them.

Randy

I’m a 58 year old male with stage 4 cancer, thank God that it is in remission, but it destroyed a good portion of my lower spine, I have enough steel in me to build a chevorlet truck. And the agony of the pain is unbearable most of the time. When all this started my Dr had me at a comfortable level but since all these regulations he has cut me back so much that I don’t have any quality of life and it’s a joke. Now why should someone that takes his meds like I am supposed to have to pay because others just want to get high and kids steal their parents or grandparents meds. The people that come up with these new laws should have to live in my world for a day or two then let’s see how fast things get changed. If someone doesn’t come to their senses fast and change these rules , regulations or laws we that suffer with this type of pain won’t have a chance. Now what are they going to do when the over dose deaths start to climb because chronic pain patients turn to illegal street drugs, and that’s happening now in a lot of states, just watch the new or look it up online it there. And then why is people who are making these laws up have never known a days worth of pain or suffering much less like chronic pain patients that have to live with it the rest of their lives. Anyway thanks for the space to voice how I feel and God bless all who suffer with this.

Mary Finn

Heroin was used as a medicine for physical ailments. It was radically abused. In 1924 Congress made it illegal due to 200,000 overdose deaths and the ensuing criminality as a result of heroin in society, as this too had usage skyrocketed when heroin was a legal medicine. The statistic of overdoses plummetted in society as a result. In the late 1990’s doctors were told the newly named opiates for pain management were less than 1% addictive, a known 100% falsity today. The crime associated with the abuse of these legalized opiates is similarly horrific as it was in the 20’s. Opiates, prior to the lie, were used in hospital settings only in very small amounts for major surgeries, half a dose, to one dose only. (They were also used for people in pain for end of life care if wanted.) Prior to the lie, medical professionals were well aware of the addictive qualities of opiates, so would never have considered prescribing them as take home medicines to anyone. Unscrupulous, unintelligent, arrogant beyond belief, and those looking at their own bank accounts in the supposed name of the greater good, severely hurt and continue to hurt people for “pain management”. The statistics prove out. Overdoses and horrific crimes dropped dramatically when heroin was stopped being touted as the cure all in the 1920’s. The CDC, a federal agency, has stated loudly that opiates destroy organs and are not and never were meant to be a longterm solution for anyone ever. I vehemently disagree that those addicted to opiates who od’d and died would have done so anyways with another drug. To me that comment is extreme arrogance and completely and utterly untrue. Many people who died thought they were taking medicine. The medical field needs to actually gain trust back from the American public. It would do so by not being so quick to believe falsities being purported by anyone who claims to be an authority. And opiate usage in the late 90’s was hailed as a landmark breakthrough, words, which markedly proved elsewise, similar to the legalization of heroin in the earlier part of the century. Anyone can see the devastation this problem has caused just by looking at the people who walk the streets of the US addicted. It can be fixed. It should be fixed. Let’s learn from this and do what our Congress did in 1924! No prescriptions, hospital use only in tiny amounts, physical therapy, body healing techniques, not continual body damaging.

Maureen M.

Thank you Ed. I wish Cindy and the other task force members the best of all in representing our CP community. Specially those of us who are suffering even more so due to med changes. Life has become so much more difficult than it ever was. Our pain levels are off the charts.
@Lynn Miller- very well said.

I will speak at the Task Force as follows:

As I noted in May before this group, CDC data show us that there is very little relationship between rates of opioid prescribing by doctors, versus opioid-related overdose mortality. Today, I offer insight on the demographics of chronic pain, addiction, and opioid mortality.

If medical prescribing contributes substantially to opioid mortality, then we would expect to see higher mortality in groups prescribed opioids most often, but we don’t. People over 50 are prescribed opioids 250% more often than young adults. But over the past 17 years, mortality has skyrocketed in youth while remaining stable among seniors at the lowest level for any age group. Patients who benefited the most from liberalized prescription policy before 2010 have shown no increased risk of opioid mortality. Where is cause and effect here?

The typical initiating drug abuser and the typical chronic pain patient are very different people. Beginning drug abusers are most often young males from economically distressed areas, sometimes with a mental health history. By a ratio of 60/40, chronic pain patients are most often women of middle age. If their lives are stable enough to see a doctor, these women almost never become abusers.

Large scale studies also show that risk of abuse or chronic prescribing among post surgical patients prescribed opioids is 0.6% or less. Yet prevailing public policy seeks to “save” this small minority by restricting pain treatment to 99.4%. Where is the justice in that?

The following is from Dr Nora Volkow, (NEJM, March 2016):

“Unlike tolerance and physical dependence, addiction is not a predictable result of opioid prescribing. Addiction occurs in only a small percentage of persons who are exposed to opioids — even among those with preexisting vulnerabilities. Older medical texts and several versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) either overemphasized the role of tolerance and physical dependence in the definition of addiction or equated these processes (DSM-III and DSM-IV). However, more recent studies have shown that the molecular mechanisms underlying addiction are distinct from those responsible for tolerance and physical dependence…”

From this background, I urge the Task Force NOT to further restrict availability of opioid analgesic therapy to people in agony. The medical evidence does not support such action.

Koki Niehaus

I’m a 56 yr old disabled grandmother that has worked a full-time + part-time job to support my daughter because after several trips to court the judge NEVER enforced the child support order. So now my body is just destroyed. I’ve got Fibromyalgia, need right knee replaced to fix the bone on bone, several herniated bulging discs in my lower back, stomach ulcer, Psoriatic Arthritis(that’s NOT only is the skin psoriasis getting worse every day but now my joints are getting unstable and bulging), mallet finger and liver disease (from drinking alcohol with 3,000-5,000mgs of Tylenol daily to ease the pain)! I finally found a Pain Specialist that prescribed meds that wasn’t hard on my liver or stomach do that I could have some kind of a decent life. But NOW…. I’m taking meds that barely eases my pain only when sitting but NEVER takes it totally away! I can barely walk to the bathroom using my cane BUT everywhere else I’m wheelchair bound. Because of my liver and stomach I can’t take any anti-inflammatory meds or Tylenol, aspirin, Ibuprofen,etc… So I live every day in HELL! Not a day goes by that I don’t think about what should I do???? Buy street drugs (which I’ve never done except tried edible med grade marijuana that did NOT help. It just made my heart rate go up, shake and a headache.) OR should I just commit SUICIDE and end it ALL???
It’s must NOT fair to put everyone with pain issues in one med limited category. That’s just like racial or sexual profiling or discrimination!!! My doctor’s hands are tied because of politicians that obviously DON’T suffer from chronic illnesses and pain OR just don’t give a damn!!! WHAT CAN WE DO???

Mary Mitchell

The President is one of the many who just does not care about the millions of Americans in chronic pain. He doesn’t care that we can buy a pack of cigarettes that he knows will eventually cause cancer and kill us , but we cannot be trusted to know when we are in so much pain that we need to take a pain pill. We might but probably won’t get addicted to. The American public is so stupid that we just think we’re in pain , that we couldn’t possibly be able to responsibly take pain medication without the government regulating us. That is what we have become. A nation that is controlled by their government in ways they don’t even understand yet. How far will it go. First a pain pill, doctors scared to treat pain patients. How many will die just for the government to say it was their fault, they were addicted, not that they were desperate and in severe pain and could not live another day. NO THE PRESIDENT DOES NOT CARE.

Spencer Davis

I suffer from chronic pain due to multiple whiplash injuries, and now at 57, have cervical spondylosis (aka degenerative disc disease), as well as facet joint arthritis and tested positive for Lyne disease. I suffer with intractable chronic pain daily.

Due to Florida’s new draconian opiod law, hich took effect July 1st, sponsored by our GOP legislature and Gov. Rick Scott, which took effect July 1st, I was told by my rheumatologist’s office staff that my Tramadol script would no longer be refilled. They cited the new law as the reason. I was shocked and bewildered. It’s clear that all the docs in our state are running scared of both the Florida Medical Board and the DEA. Who can blame them?

Luckily, my chiropractor took my side, and sent a letter to my rheumatologist on my behalf, which helped me get signed up on a quarterly PDMP program.

I find it absurd that I had to sign a pain management contract and submit to quarterly “wiz quizzes”, just to get a refill on pain meds, which I used to get from my GP, and have taken for 10 years without issues. I am not a drug addict, am stable, married, disabled, have no criminal record, not even a parking ticket, yet they treat me (and everyone else) like a parolee from state prison.

Still, I’m lucky. I had help from a health care provider that really cares. Others have been kicked to the curb in record numbers, and had to go “cold turkey”. One pain patient who was dropped by her doctor, had to move from Kentucky to Colorado to get pain prescriptions restored.

These new draconian laws, and the DEA’s harassing scare tactics against doctors nationwide, can only lead to more suicides, more heroin use, and mire crime, even violent crime. The pendelum has swung too far and chronic pain patients nationwide are now becoming unintended victims. Or, as someone from the WHO pointed out, our new opiod laws constitute a human rights violation as “cruel punishment.”

In my opinion, chronic pain patients need to band together and file a federal class action lawsuit to stop this nonsense. Meanwhile, I am disturbed to learn that only one person speaks for thousands of us a patient advocate.

Dana

I suffer with Chronic Pain, I have since I was 13 years old. I used to have Endometrosis so bad I would be in bed 3-5 days a month, in addition I suffer from debilitating Migraine headaches. I finally went to a Pain Doctor in 2009 for back problems & symptoms of Fibromyalgia/R.A.
My back was bad all through my 20’s, I have severe Fibromyalgia, Severe Arthritis, Anemias, etc…migraines, Trigeminal Neuralgias. The way Chronic pain patients are treated as suspect #1 is terrible. I have had my pain meds cut twice. I have had to just “get by” when I explain that I’m having worse symptoms I’m met with a vague look by the P.A. and a lecture. I have been to the E.R as a result of my conditions, I would gladly get off pain medicine if I could function without it. I would be bedridden if I did not receive treatment.
It is very wrong for politicians to lump in law abiding pain patients , with law breaking Drug Addicts, who will go to any lengths to get drugs. I am notorious to the state pharmacy board in the state I live in, isn’t that enough ?
Doctors & Surgeons, other health providers take an oath to “Do No Harm” if they have a patient that is terminal, in terrible pain why are they being treated as suspicious if they are helping there patient ? I say indemnify the doctors, have Adults sign and be advised of risks.
Adults should be able to determine there course for there health. Treatment for patients should be between Doctor and patient !
Lastly, addicts are ill as well. There should be treatment beds for addicts, not 5 beds when 200 are needed. AA, NA are the most successful fellowships for Addicts and Alcoholics and it’s free. If the courts would stop there involvement AA & NA message it would be more successful.
Lastly, Chronic Pain patients know that just taking pain meds will not help there daily pain, they must include movement, Mindfulness, Alternative Medicine, Surgery, Healthy Eating and Activity, if possible, you are told at Pain Mgmt that you have to learn to just live with pain. 60% of my pain is not covered and it does have a direct impact on my daily functioning and ability to work.
I would rather work then have daily pain !

Monica McAfee

I take pain meds so I can work to support my grandaughter and just to be active thru the day, WHY ARE WE BEING PUNISHED? Like others that take their pain medications like they are suppose to , why are we the ones that have to suffer.
Enforce more pill counts…more drug tests…SOMETHING….JUST DONT PUNISH US…THE ONES THAT NEED THEM TO FUNCTION

Wow! I have read such great, meaninful and very important points made by so many people who suffer from chronic pain on this discussion!
Thank you, as i share so very much of what you have all said.
It is absolutely crushing and cruel for people who are truly suffering torturous chronic pain to be further hurt and dehumanized by some of the current treatment and attitudes of so many doctors, espesially tte younger ones at this time.
I can imagine a scenario where the illegal drug trade is profiting greatly from Dr’s paranoia regarding prescribing adequate pain treatment for those who are literally being tortured daily by any number of chronic pain producing conditions.
That leaves me to wonder if there is corruption and not concern, behind the blaming of Drs and their subsequent reluctance to chance criticism of good and humane pain control.
Many people would rather die than be classified as an addict or drug seeker as that is a very painfully insult added to the existing insult of their disability from severe chronic pain.
This, unfortunately is very difficult for some people lacking empathy and who have never known severe chronic pain to UNDERSTAND.
➡Simulate severe chronic pain for people in positions of decision-making on this issue. I believe that is a very resonable request in this situation. Simulate this for a solid week… or just one a day, until they will have learned what we who suffer severe chronic pain actually feel in our bodies, minds and souls.

Allison

TREATING EVERY PERSON THAT IS ON A PRESCRIBED . OPIOID PILL AS THEY ARE ADDICTS, AND COULD OVER DOSE IS VERY UNEDUCATED AND NAIVE. WHY? BECAUSE THOUSANDS. UPON THOUSAND HAVE BEEN ON ” OPIOIDS ” FOR PAIN FOR YEARS. AND HAVE ” NOT ” OVERDOSED ” OR ARE ADDICTED. TAKING RESPONSIBLE PEOPLE ” OFF’ THEIR PAIN MEDICATION IS ” GENOCIDE”… CREATING A CRISIS WITHIN A CRISIS. !! PAIN PATIENTS. ARE. NOT THE PROBLEM.. NOW IF YOU GO TO THE ER. THEY GIVE YOU TYLENOL. ARE YOU SERIOUS !! INHUMAN, WHAT’S GOING ON. TREATING DOCTORS LIKE THEY ARE CRIMINAL’S. THIS HAS GOT TO STOP.. !! LIVING WITH CHRONIC PAIN DAY IN AND DAY OUT IS DEPRESSING. YOUR MIND CAN’T HANDLE HIGH LEVELS’ OF PAIN. SOME ARE EVEN COMMITTING SUICIDE.. THIS HAS GOTTEN SO FAR OUT OF HAND… JUST TO STOP A OVER DOSE.. OR ADDICTION. SO BAD.. WHAT IS HAPPENING IN THIS COUNTRY. !! .. THOSE. PEOPLE THAT HAVE COMMITTED SUICIDE… THEIR ” BLOOD ” IS ON YOUR HANDS !!..

Kim C Slayton

I’ve been a pain patient four 8 years after 7 years my pain was so bad I did have surgery on my neck all went well for 3 months not wanting to go back to a pain clinic where all they do is mask pain and tell you what they’re going to give you for the pain Med and keep you in the dark of just how serious your condition is unfortunately I had to learn. For myself not wanting to go back to a pain clinic I sought help with medical marijuana which is not all that it is cracked up to be it does ease the pain. I had to go through all the hoops to get to a pain doctor only to find out that he was not going to give me any Percocet or any other narcotic as long as I had marijuana in my system lots of pain high blood pressure fever and sweats joint injections not enabling me to live my life the way that I would like I sat here and pain only because silly pain doctor decided that he just wasn’t going 2 prescribe me any percocet of any kind because of the marijuana I don’t think that’s right actually it sucks.
I would like to see a DO it MD go through the system. All of us have to go through because the law could not stay ahead of the bad people. the people who actually need this medicine are not getting it.
With that said put that in your pipe and smoke it😎

Kristen

I live in R.I.and feel greatful I have a very good Dr who understands that I suffer like so many of you with multiple Chronic Pain issues including being in remission from Cancer.My Pain has gotten so bad that I am finding that I’m spending more days in bed than ever.The simple task are becoming more difficult.If it weren’t for my pain meds I know I would be confined to my bed.That being said the fear of lossing my meds are always there.My med has already been lowered once due to the guidelines However I also blame the pharmacy for sticking their nose where it doesn’t belong.They act like they are Drs and will decide each month if they will fill my script It’s always a huge problem every month with these idiots.I know im going off the subject but I wanted to know if anyone has had a recent MRI because I did and I compared my new results with the past 4 years and it seems to me they down played and minimized the interpretations of latest MRI.I am schedualed to see a Surgeon next week and plan on bringing the older MRIs from the last 4 years on a disc to show him.I find this strange and wonder if this is a new sneaky tactic.There is no way my conditions have magically gotten better, but I wish they did.I also have it documented that I have nerve damage and may lose my ability to be mobile.My Dr agrees something isn’t adding up here! This BS has got to stop and allow the Drs to decide what is the best treatment for their patients and Stop punishing our Drs for doing their jobs.I will add that though I have my new MRI results on paper ,When I went to the Hospital to request the CD version I was denied which I never have been before.Thank you to everyone on here.I am praying for all of us suffering and hope someone out there listens to us and stop comparing us to the Junkies who have ruined it for so many of us that are suffering.