Meeting of the Pain Management Best  Practices Inter-Agency Task Force 
2018-06-18 2018-06-18 2018-05-24 2018-05-24 2018-05-24 2018-05-24 2018-05-26 2018-05-26 2018-05-26 2018-05-26
HHS-OS-2018-0009-2014 HHS-OS-2018-0009-1949 HHS-OS-2018-0009-0004 HHS-OS-2018-0009-0006 HHS-OS-2018-0009-0005 HHS-OS-2018-0009-0057 HHS-OS-2018-0009-0099 HHS-OS-2018-0009-0104 HHS-OS-2018-0009-0088 HHS-OS-2018-0009-0091
04:00:00 04:00:00 04:00:00 04:00:00 04:00:00 04:00:00 04:00:00 04:00:00 04:00:00 04:00:00
https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-2014 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-1949 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0004 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0006 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0005 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0057 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0099 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0104 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0088 https://api.regulations.gov/v4/comments/HHS-OS-2018-0009-0091
Kathleen Lawrence Jennifer Katherine Anonymous Donna Traci Sharon Josie Haley
Queen Garner Vinnard Dominick Anonymous Thacker Morgan Williams Mannor Starkel
I am a chronic pain person.  I have for last 5 yrs taking 2 ophiod medication a day.  This is the only medication that works.  I have done over the counter pills, therapy, injections , chiropractor, surgeries, ect to no relief of my pain. I have had four shoulder surgeries for torn rotator cuff and now have a calisfied shoulder.  CDC now says 90 mm is my limit.  My doctor has tried about every medication to try but did not help.  Herion is what is causing deaths and now doctors are being arrested for writing ophiod prescriptions and this is wrong.  The data includes all ophiod related death.  Why is there a break down of herion only death data?  This is a witch hunt and attack on the innocent for chronic pain and their doctors.  What we need is for law enforcement to do their job and stop the illegal herion,fentanyl from being sold in this country.  These laws on ophiod criss has no barring  herion use but harming chronic pain patients and their doctors.  You are now forcing doctors to turn away the chronic patients to commit sucide because they have no way for quality of life from severe pain that none of you have ever experienced.  It should be up to doctors not government to determine how to treat chronic pain.  We have all been put on a list, tested,  pill counts, ect which a conviced person is not made to do but yet more death have gone up from herion.  Anytime government gets involved  it does more harm than good.  Please listen to the chronic pain patients and doctors and quit harming all of us as your laws and guidelines are harming us and not helping herion addictions.  I now if go to hospital,  I have to bring my medication or no help for pain from surgeries as hospitals will not give you medication ordered by surgereons.  Putting doctors in jail is wrong and making decissions on how to treat is the doctors decision and not to be prosciuttoed for treating patients.  DEA should not be arresting private pain management offices and making doctors to turn away patients for treatment.  Why dont you pass laws on herion addicts for their use?  These laws and forced guidelines have done more harm to the innocent chronic pain patients than the herion addict.  PLEASE wake up and get data on death you have caused now on innocent people who did not have any addictions but to have a quality of life to have some relief of their pain.  It has been documented that chronic pain patients do not develop addictions but only relief of pain.  Limiting surgery patients for pain medication is wrong and should not be lumped into one group as every surgery, person have different levels of pain than government telling you your pain level should be.  Please I beg your to stop passing laws and guidelines you have no business in.  Only the health insurance companies are benefiting as they now will not pay for it.  You need to stop and help turn back the guildelines that were in affect in 2012.  Chronic pain patients are now being treated as criminal for suffering from diseases, bad surgeries, ect and now suffer from pain and ophiod prescriptions are only pain relief for a quality of life you have now taken away from them and  prison doctors and clinics for trying to help chronic pain patients.  So wrong and I can only hope you read this and do the right decisions and stop making bad laws and guidelines that have not stop herion addictions and herion from being sold in this country. Also CDC have admitted data are not correct. I am judged on my appearance, I have tattoos, but I have never failed a drug test, not ever. If a doctor is going to judge on appearance then they need to acknowledge  LACK of signs of addiction, I dont slur my words, I dont lack hygiene, I dress appropriately for the weather, I dont ask for early refills, Im not impoverished, or living outside my means.I am 54, started paying into social security when I was ELEVEN years old,  on disability for an inoperable back since the late 90s (approved in 10 days time FROM APPLICATION-FACT) , I have vertebra L4 shattered in 4 pieces.I have been on Norcos since the 90s, never failed a drug test, never asked for early refills. I lost my pain doctor, I was abandoned actually, and now I am treated as a drug addict teenager. I am sick of being categorized alongside the dregs of society. All Ive ever done is help people, and Im tired of being treated like Im one of the problems with society. I informed my PCP that I had witnessed drug sales IN THEIR LOBBY, to which they didnt even respond, but when I needed medications from that office I was shunned and lied to, and treated like I was a criminal.Doctors need better guidance from you, as they seem too scared to act outside of what they PERCEIVE to be the parameters (what I interpret as lack of own self confidence).They too often discontinue meds, or refuse to continue meds,  absent fact or finding of fault on the part of the patient . The denial of appropriate care is a violation of a basic human right, ESPECIALLY in a country that legislates healthcare !!! I suspect my own PCP of illicit or abusive drug use, perhaps doctors should submit to testing as well, and be allowed to express that they are openly clean as well, and not addicted to any substances.How many doctors are actually hiding their own addictions, while cutting legit pain patients off their meds ?Doctors need to be reminded to FIRST DO NO HARM , not all people prescribed pain meds are drug abusers.Even addicts need to be treated with compassion, not judgment , ostricisation ,  and lack of care.Doctors need to acknowledge individuality in their patients, and not group all pain patients into one nefarious category,THAT is medical negligence. If we are not supposed to take other patients meds, then we should not be looked at in the same negative category as any other patients.It isnt fair to my family, or anyone around me ,for me to be hurting and compromised , and be grumpy , because some doctor is on a power trip, so busy knowing it all, that they fail to acknowledge any facts.Its hard to trust any doctor after being treated this way. I have been abandoned by four doctors in a row, I have had medical records LOST by doctors.The only thing Im guilty of is wrecking my body (once worked 9 days with a broken back, got harder by the day), working to take care of my family and pay my taxes like a real american , I didnt ask to be put on disability and I sure didnt ask to be put in the position I am in now, denied proper medical care because of someone elses actions. How can I have any quality of life if it is taken away from me ?I am attaching a copy of parameters that was not compiled by me, but by my wife, and I wholeheartedly agree with all the points outlined in it. (I also use my wifes email address, please do not disregard my comments  due to a shared email address.)  To whom it may concern,  I am a 40yr old chronic pain patient, Im legally disabled and have been treated by a pain management Dr for over 5yrs. When the CDC guidelines came out, nearly every Dr/specialist/dentist/etc..began taking meds from every patient, terminal, chronic, and acute pain patients alike - all because of incorrect data and overreaction. Now millions of people, including myself, have been left suffering in pain, and what is that going to accomplish? Nothing!!! Chronic pain patients are seeking a life with less pain, while addicts are seeking a high, taking anything they can find, which is more often than not, a drug thats been smuggled in or made by an at home chemist, whos putting Lord knows what into them  - Fentanyl, as we all know, is used very often. When research into the actual cause of listed opioid deaths is completed, 99% of the cases involved Fentanyl, Oxycontin, Morphine or Heroin, occasionally Xanax or Valium was also present. Nearly all were known drug addicts, taking too much while chasing a high, while pain mgmt patients take the same amount every day, and dont take more than prescribed! For me, with my overactive thyroid, any medication I take to work only half as long as its supposed too, from the very first dose, and now because of the CDC guidelines, my Dr cut my medicine amounts in half without warning or cause, purely based on the CDC 90 MME number, which does not take into account metabolism and genetics affecting the efficacy of meds for each persons body and metabolism. I agree that Dentists and primary care Drs treating acute pain patients should not be prescribing the strongest, more addictive meds, without at least consulting a specialist. I lost my younger brother to a heroin overdose in 2011, he switched after becoming addicted to Oxycontin, which his dentist gave him oxy for a toothache!!! It wasnt abscessed or severe, yet the dentist gave him one of the most abused/strongest meds on the market. He was an addict, stealing to support his habit, only wanting to get high, and after numerous times going through rehab, and even overdosing once already, nothing scared him enough to want to stop using. I believe hed still be alive if that dentist hadnt prescribed it.   Treating every person as if were addicts, and all built the same, absolutely will not work, and it will do nothing to stop the number of overdose deaths, if anything, theyll increase, as chronic pain patients either commit suicide because they cant live with the pain anymore, or, they themselves turn to buying illegal drugs on the streets, just trying to get some relief, and die from some nasty concoction that isnt what they expected. The 2 meds I take, are not listed one single time as cause of death, and yet theyre affected because theyre categorized the same as the ones people are actually dying on. We need individualized health care, built to each persons body, genetics and metabolism  - were not one size fits all! Stop punishing millions of innocent people, keep in mind that if we cant walk, stand, sit, etc...we wont be able to vote either! Go after the true source of the problem, illegally manufactured and smuggled drugs  - not chronic pain patients just trying to live a semi-normal life with less pain. Thank you for your time, Jennifer V  I am 62 year old disabled woman. I have osteoporosis and I have suffered two major BURST fractures and have lost count of how many compression fracture I have suffered. I suffed at least 2 compression fractures that were between 25%-50%. I have suffered a dislocated fracture of my R wrist an external device was used to set that fracture. I have broken of my feet at least twice. I suffered 3 compression fractures at my neck when I was knocked out by a 40 lb block of ice that fell off an M1Tank while I was working at APG, MD. I have at least 2 buldging discs and a pinched nerve at my T12 vertebra. I have Fibromyalgia, arthritis thru out my back, DDD and migraines. In an effort to deal with my chronic pain issues I have spent, out of pocket, over $10,000 on epidurals, acupuncture, Thi chi classes, maggage, chair yoga classes, vitamins, essential oils, herb and PT. I currently walk 3 miles almost every day and eat a healthy diet. While these things help me deal with my chronic pain I still can not function without my opioid pain medication. I have been on them for 20 years. About 10 years ago I came off of my pain medication for approximately 2 years because I wanted to see how my body felt. During that year my life went down hill. I barely made it too work because I was in so much pain, I was not able to do any chores around the house, I never had sex with my husband, I was unable to exercise and I had no social life at all. The pain was so severe that I could not be around my grandchildren. Then in March of 2011 I was in an accident that resulted in a 60% burst fracture. Since the accident I have remained on pain medication Oxycontin. I experienced an unusually long recovery time because of the osteoporosis. I was not a candidate for cement fill because the vertebra was shattered and the cement would have leaked though the veterbra which would have caused me to be paralyzed. This was confirmed by two orthopedic surgeon. I also want to mention that I had both my knees replaced in 2016 and 2017. Knee replacements do not make you 100% pain free.  After my burst fracture in 2011 I was put back on Oxycontin. I built tolerance to the Oxycontin because my recovery time was so long and because I was in a great deal of knee pain. My orthopedic surgeon wanted me to wait until I was 60 before he would replaced my knees I would not turn 60 until 2016. During the time with my PCP I felt that my pain was adequately managed. I held a job, was able to have limited visits with friends and family and exercise 3 times per week. In 2014 my Primary Care Physician (PCP) told me that things were changing...that due to opioid overdoses the CDC was writing guidelines for opioid prescribing and he felt I would be better served going to a Pain Management Doctor (PMD). The first thing the PMD did was cut my Oxycontin in half. His reasons were that the drugs were no longer working for me. This was devastating for me and my life completely changed over night. I was no longer able to work, exercise or socialize. During the next 4 weeks he lowered my meds 2 more times. I suffer terribly but despite excruciating pain I try really hard to do the things I HAVE to do to try and help my pain and stop my osteoporosis from getting worse. Now my doctor says he does not know how much longer he can continue to prescribe my opioid pain medication. I can not take even more pain. Please do not prevent doctors from prescribing pain medication to chronic pain patients. Please do not take away my pain medication I would lose the ability to function. There has got to be a way to handle this opioid (heroin) crisis without making pain patients suffer. It is inhumane, torture and cruel. We are suffering we are losing hope and some of us are contemplating sucide. I am begging you dont take our meds away. Sincerely Kathy Dominick Any coordinated federal policy on pain management must start with the role of government. Government has a compelling public interest in prosecuting pill mills and shutting down the illicit drug trade. Government should have no role in regulating what dosages physicians prescribe to legitimate patients.Patients in pain management need two things from the federal government: 1) The CDC must immediately revise opioid prescribing guidelines to clarify that benchmark dosages do not apply in cases where pain is intractable, the painful condition is expected to last a lifetime, and other treatments have been ineffective or do not yet exist. Patients with a lifelong diagnosis of intractable pain should get the same exceptions from dosage limitations that cancer patients get - at the doctors office, at the pharmacy, and for every insurance plan covering prescription medication.2) The DEA and state medical boards must never target physicians for disciplinary review based solely on number and dosage of opioid prescriptions, absent other evidence of criminal activity. Doctors who specialize in treating intractable pain will prescribe more pain medicine at higher dosages. Treating this as a warning sign in itself is, in effect, federal discrimination against patients with disabilities.For the last twenty years Ive been in pain management for a lifelong condition called IC/BPS. There is no cure, and the cause is unknown; the most likely theory is that its autoimmune.To give you an idea what that is, imagine your body is mis-programmed to punch bloody holes in your bladder 24/7. Imagine urine dripping in from your kidneys feels exactly like salt on a hundred razor cuts, and the only (partial) relief is peeing.Unfortunately I am one of the 5% with my diagnosis for whom all known treatments (diet, non-opioid medication, electrical stimulation, weeks in a multidisciplinary pain clinic, physical therapy, meditation/hypnosis/mindfulness, alternative medicine, pouring various medications into my own bladder through a catheter multiple times daily, and all other treatments currently known to science) have no effect. Barring a research miracle, this will continue for the 40+ years I have left to live.Combined with other coping strategies, pain medication gives me a productive, near-normal life. Pain medication has allowed me to earn a doctorate, teach college, and raise a healthy, happy son with my loving husband.With my current treatment, managed by a pain specialist, I can be away from a toilet for up to an hour. I can teach class, fly on a plane, and walk in the park with my child. In twenty years, I have never achieved that level of functionality with any other treatment. At or below dosages recommended by the CDC, I get approximately ten minutes between bathroom visits. Needless to say, this is not consistent with working, parenting, or any semblance of a normal life. Consider an analogy: Suppose you are visually impaired, and need a cane to get around. Suppose theres a national epidemic of people beating each other with canes. Would the solution be to make canes illegal? Clearly not - this would deny millions of Americans with disabilities a legal accommodation they need to participate in society.My lifelong disability requires pain medication as an accommodation for me to participate in society, just as a person who uses a wheelchair requires a ramp.Please reject the false and insidious narrative that opioid medication is only for cancer and end-of-life care. I am living proof, there is such a thing as palliative care - care for a disease with no known treatments remaining - that is not also end-of-life care.As your task force meets, you may hear stories of chronic pain patients started on long-term medication too soon, before non-opioid treatments had been fully exhausted. Please also remember, your policy must serve patients for whom that is not remotely the case.When you hear the claim that quality of life is always better without opioids, I urge you to please remember me. I am a long term chronic pain patient who uses opiates to have any quality of life at all. I have RA, Sjogrens Syndrome, Fibromyalgia, Osteoarthritis, ulcerative colitis, intercystial cystitis I have had pain since I was a child. We were too poor at the time to have it doctored so I was given aspirins. Then I took ibuprofen until I developed ulcers of the esophagus and even developed Barrents esophagus. Opiates are the only thing I can take safely now. Have you ever felt so ill that you couldnt get up to go to the doctor? As a pain patient, my life is now knowing I have to go over to my doctors office every month to get a script to fill. It doesnt matter how exhausted I am or how much pain I am in, it has to go like that now. A blizzard could be on its way and you still cant get them filled any sooner than the exact date. I would think that electronic scripts would be way more crime proof than this way. I dont have an issue getting my blood pressure meds, stomach meds or any other filled. I get to the pharmacy counter where I have to prove myself to get a drug that is prescribed by a doctor. A doctor who knows and has already assessed my need for it. Meanwhile, I see people buying carts of alcohol and carton of cigarettes. No issue. No explaining. Every month I live in fear of being cut off or tapered down. If the DEA is going into the addiction prevention business, they should include alcohol and tobacco as they are drugs. I have been working for a drug prevention coalition in my area for 15 years. I understand addiction and drug trends. The opiate/heroin issue is fading replaced by meth for adults and vaping for youth. The outcries to fix the opiate issue will lessen because the suburbs will feel safe again. Meth is considered a redneck drug and there will be no outcry to fix that ...Meanwhile, pain patients will be the true victims of this war. I urge you to stop trying to baby proof the world. It doesnt work. Too many chronic pain patients are going to be suffering even more because their doctors are afraid to prescribe pain medications now. You need to figure out where the people who are dying from opiates are getting them from. The people that I have heard of that have died bought them from someone not knowing that they were laced with fentanyl. I think you are targeting the wrong audience. You dont know how despairing it is when your doctor tells you that they will not treat your pain anymore. Ive been dealing with Pain Management for several years now, its always the same band aid fixes used by different doctors that have short lived results.  Im 51 years old, I have Osteoarthritis, degenerate joint disorder, spinal stenosis, Fibromyalgia, and compilations from hip replacement.  Theses are the major issues I have that have also caused smaller issues that have become quite painful in just dealing with daily living.  Ive been given oral medications, topical medications, spinal injections, and physical therapy.  Ive had several operations that have led to more complications,  total hip replacement led to infections and multiple surgeries.  Shoulder surgery led to muscle wasting and limited use of my left arm, and finally neck surgery where fixtures backed out and now my neck wants to go forward. Now im on the verge to start yet again more issues that came from complications, the roto cuffs in both my arms have been effected. Along with the trap muscles in my shoulders are in constant spasm due to both my neck and shoulder issues.  I know how the proces works, you go see your family physician who in turn will send me to see a Orthopedic surgeion.  I will undergo MRIs, Xrays, and maybe changes in my medications, I am now at the point where it may involve some type of surgery again.  But I know that no matter what is done to me I will be in chronic pain for the rest of my life.I used to work for a major health insurance company I fully understand benefits and the changes that have been made concerning opid medications.  Now we have alternative medications and services that are out there but are non covered by the Health insurance companies and guidelines.  Through several of the persons who have preformed physical thereapy on my person have advised me things and then would say but its none covered.  I want to address this now.Acupuncture:  Per my health insurance which is Medicare they will purchase or rent a muscle stimulator or Tens unit but not cover Acupuncture.  As a person who is looking for releif how am I to know what will and will not work if Im given a band aid of a Tens unit that after a period of time I keep turning it up to dull the nerves in my body to the point it doesnt work any more?  Can I try Acupuncture?  No its a none covered benfit under my health insurance, As a widow living on social security disability this will not fit in my budget.  So I can not tell you if this will work for me to help control pain.Physical massage therapy:  I can have as a covered benefit if my Doctor prescribes physical therapy part of this therapy can be Physical massage but its limited to moduals of time and never extends past that.  As I have a person preforming physical therapy on my body in the form of the modual of physical massage I am always being told I would benefit from more massage.  But due to the limitations in benefits and services this is a Non covered Benefit by pretty much every single health insurance company.Medical marijuana:  Yes I carry a Medical marijuana card but lets look at this please.  One obtaining a card is not covered by Health insurance.  The fee was $200 for a doctor to approve and confirm I meet one or more of the conditions.  Next its either $50 dollars for the card that is full price on the website or $25 dollars if your on assistance programs.  Then you will have follow up appointments with the physician that is $100 each.  Then finally the products weather its oils, foods, vaps and so on all of that is out of my pocket.  As a person living on assistance and social security disability plus a recent widow, this all is a huge hit on my pocket.So in the years that Ive required Pain management so much has changed that I feel I have no quality of life anymore.  Since Im a recent widow things have gotten worse on my end in just normal home management.  Yes you have a Opid problem in the united states but this has caused us the people who are suffering already limited on what we can and can not do to give us just a moment rest, a good nights sleep, or maybe some quality in life.Ive given up on what anyone can do to help me, being a chronic pain sufferer I now have medical issues Ive never thought I would have to deal with besides Pain. High blood pressure, Diabietes type II, Insomia, Depression, Anexity, Concentration issues, forgetfulness, liver monitoring due to medications. And the Physicians will have a pill for everyone of them issues but the one thing that is making my life a total hell. PAIN My mother was continually cut down on her pain medication by her doctor. She has had Hepatitis C since her early 20s and has tried interferon treatments several times and it didnt work. This last time almost killed her.  This disease has caused many issues for her and pain. She has never abused her medication. , never llost them, never dropped them in the toilet, never had them stolen or any other reason that actual addicts claim when trying to seek more. To lump everyone together is absurd! Each patient should be treated differently. If a patient gives any of the above excuses yes cut them off! But for Gods Sake dont punish the people who are not a problem and need help with their pain! I hope a solution is found soon so people suffering can find some relief and not by the way of suicide which I believe a lot of people will choose if they feel they cannot live with the immense pain they are in.  I am sure that these all sound very similar since we are all left out  in the cold with no help. I personally  was cold turkeyed off my pain meds and it was awful. I am not a criminal I am sick with incurable diseases. Shame on every single person who is allowing needless suffering by MILLIONS!!!!  How sad and pathetic a world we live in when we are forced to suffer all day everyday because of nonsense and numbers that are incorrect. None of us did anything wrong or asked for this to happen and Im sure if whomever makes decisions spent time in our bodies they would think and feel alot different. We forgot along the way about putting ourselves in others shoes. We also have forgotten compassion and empathy. Someone NEEDS to make this right. Thanks for reading, Haley S from Montana 