HHS Pain Task Force To Meet May 9-10 – Pain Community is Represented

HHS Pain Task Force To Meet May 9-10 – Pain Community is Represented

By Nicole Hemmenway – US Pain Foundation

The 90-day public comment period for the Pain Management Best Practices Inter-Agency Task Force’s (PMTF) draft report came to a close April 1, with more than 6,000 individuals and organizations submitting feedback.

Among those to comment was the Consumer Pain Advocacy Task Force (CPATF), a coalition of pain patient-related nonprofits, including U.S. Pain Foundation, which submitted a 25-page joint letter. In addition to U.S. Pain Foundation, the CPATF letter was signed by the Center for Practical Bioethics; CHAMP (Coalition For Headache And Migraine Patients); Chronic Pain Research Alliance; For Grace: Women In Pain; Global Healthy Living Foundation; Headache and Migraine Policy Forum; International Pain Foundation; Interstitial Cystitis Association; RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and The Pain Community.

“We are very grateful that so many patient organizations joined together to respond to this report with one, unified voice,” says Cindy Steinberg, U.S. Pain Foundation’s National Director of Policy and Advocacy and the only patient advocacy representative on the PMTF. “While the draft report holds a lot of promise, from the patient perspective, we had a number of important suggestions for ways to improve or expand on its recommendations.”

Of note, the CPATF letter commends the draft report’s emphasis on individualized care and encouraged further emphasis of that point. CPATF also urges PMTF to go further and recommend that the Centers for Disease Control and Prevention (CDC) formally revise and reissue their 2016 guidelines on opioid prescribing based on the PMTF recommendations.

Beyond general feedback, the CPATF letter includes specific suggestions on nearly every section of the report.

The PMTF is now working to review the comments received, finalize the report, and submit it to Congress at the end of May. The PMTF will hold its final meeting in Washington, D.C, on May 9 and 10, which will again include a public comment portion and will be live streamed. The pain community is encouraged to participate. More information about the meeting can be found here.

To read the letter, click here.

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Authored by: Nicole Hemmenway

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Shannon Thrasher

Chronic pancreatitis and the pain it causes will not leave my wife until she dies. She should not suffer while researchers look for a cure to addiction. Doctors need the legal capacity to provide long term pain management. WE NEED TO STOP applying rules created for addiction to patients who suffer 24/7/365.

Dee

I pray everything goes good. There are too many suffering and being “labeled”. Doctors afraid to care for their patients. It’s time for change we are ALL different we are ALL individuals. No one should have to suffer and doctors should be able to give their patients some quality of life. That is all anyone ask for. To be able to make it thru a day with comfort and to be able to interact with their families like most do.

Ali

The meetings have shown promise of collective responsibility to assess the needs of the intracable chronic pain patients.
I am so tired, depressed, and tramatized by this last three months. Those in the intracable chronic pain community don’t have much energy after being tappered, stopped medication, and lost medical care.
I am not an Opoids addict but I am a compliant intracable chronic pain patient that withdrawal means return of pancreatitis pain with a vengeance. I am a retired RN,CNN and see these definitions of Opoids addict needs to have compliant intracable chronic pain patients taken out of the equation. I believe those that committed suicide have paid the ultimate price for this change.
These 2016 guidelines have ruined lives that can never return to there previous quality of life.
Yet now there is a flicker of hope these agencies are listening and moving toward a new outlook on use of Opoids for the compliant intracable chronic pain patient.
Our intracable chronic pain community desires to serve our community, family, and work responsibilities with use of Opoids appropriately as before.
This is not our ideal life but it’s a life we can be an asset to others.
I truly appreciate all the agencies that have participated to update the guidelines to meet the needs of our compliant intracable chronic pain patients and others suffering this disease.

Has any looked at the countrys that help their addicts and legalsized drugs? If I have not caused any problems and my meds gave me some quality of life what is the problem? If I pay extra for my insurance or pay for it myself what is the problem? Why do some have to think they know what is good for ALL? Who is to say how a med is working on one the same way? Why is it that people that hasn’t been there allowed to make the rules for others? Why is it that they always seem to pass things in in a hurry that seems to hurt others.I was taught that if you have the time to do something again then why not take the time to do it right the first time? My biggest question is” why would anyone want to take away someone from doing things with their grandkids,kids,family,friends,and the community? Even bigger one is WHY WOULD ANYONE WANT TO MAKE SOMEONE SUFFER OR FEEL LIKE THEY ARE BEING TORTURED??

Terri James

Please everyone, please say a prayer that we will finally be heard as well as understood. That we will once again be treated like human beings, that we like others do bleed and that our hearts are broken over something that was taken horribly out of context as well as terribly misunderstood by so many. Thank you so much!💞

Rich Reifsnyder

Hi, I am happy and thank The HHS to Have this meeting and hopefully it will benefit all CPP,s.And I am optimistic and Thank the FDA with coming out with their statement around April 24th clarifying the misapplied guidelines.Hopefully everything will be productive and the start for positive changes and everybody will breath easier and a Less Stressful Atmosphere surrounding this issue.

Stephen

My wife, who is not a chronic pain patient, has just been criminalized. She had a 30 day prescription for tramadol over a year ago, never asked for refill, and still has over half the prescription left. She was called into her primary care doctors office (who did not even write this prescription) and forced to sign up for their opioid monitoring program, no prescriptions from other doctors, drug testing, and all the usual requirements. My wife felt like a common criminal with no rights, and was presumed guilty without any logical evidence. Ridiculous!
Buy stock in drug testing companies cause it appears were on our way for mandatory drug testing for anyone who ever has used any type of opioid.

I can only pray that the efforts by each and every well intended advocate who either presented or submitted written proposals will be taken seriously by those at the very top. Yes I may be pessimistic, but I have good reason to be. I learned that government agencies that pretend to be inclusive and receptive are often just following standard procedural protocols while a predetermined outcome has already been approved and initiated by the director weeks or months earlier. (Read as heavily influenced by huge Political and/or Corporate lobbyists.)

That said, I have never lost hope! Thank you for all your efforts.

Walter Strickland

Nicole, thank you so much for the report and you are very much appreciated ! I will help in any way I can in this effort.Without all of us who are the targets / the wrong targets I will add / working together to help in our situation we ha e a chance to have a good outcome so we can be treated for our ongoing struggle to get the proper treatment we need to not be in so much pain and to have a decent quality of life as we did before the CDC stepped in to play doctor.Our good doctors know how to give us the proper treatment me need and deserve .to the CDC and the government ,let our doctors do their jobs for us without fear of loosing their license.Instead go after the real problems / racketeering by unscrupulous doctors , pharmacist , and the main people to go after are the people selling illegal illicit Heroin , Fentynal , etc on the streets, this is the main cause of overdose deaths and we all know this , even the CDC knows this. I have said this before so I will say it again / this is the same strategy used by the government on gun deaths in this country.They cannot stop the illegal use of criminals using guns to kill folks so it is much easier to brandish strengent laws to take lawfully owned and used guns of any type really because we are the easier targets to go after . In both scenarios it make their arrest numbers increase and therefore makes it falsly look like there are solving the problems when in truth they are making the situations much much worse.So to all of us suffering from different conditions causing us to be in unbearable chronic pain let’s stand together and fight the good fight for our rights to get the proper treatment from our doctors and for our doctors and pharmacist to be able to do so because they know is the right thing to do for us and to do so without fear of being arrested at the whilms of the CDC and others , by the way are not doctors.I have input all I can at this time , but to all of us let’s continue to fight the good fight .

dave

Many do good but few do it well. The CPATF does good but not well. We see what happened with their advocacy for the national pain strategy- a rough beast with easily deliverable deliverables that was essentially unfunded and now essentially defunct.
It is not just greed, carelessness, neglects, narcissism of the iron triangle of technocapitalism in pain care that has failed Americans in pain- but the failure to do good well. Unfortunately, in terms of vision, modeling, planning, and consensus building both advocates and the iron triangle arent doing good well enough. And so people in pain continue to be damned by faint hopes of much different or better pain care.
There are very knowledgeable, experienced, sincere, dedicated inspiring and caring advocates-and they are increasing their presences and having success being heard. But frankly, they need to do better in terms of understanding the problems in our pain care system and plotting a better course. Some suffer from a very short term focus, others have failed to imagine much better pain care or advocate for the establishment of energetic rights for people in pain. In some respect, advocates are victims of the poor orientation of the iron triangle and cant see light in the darkness they have awakened to.
I count myself as needing to do much better as an advocate. I have striven for breadth of understanding and seen what is lacking. But i have not been as active as i should be.
I will do better for people in pain and hope other advocates will recognize their shortcomings and work to perfect their efforts as so much depends on our care for others in pain.

marilyn

I know we have all been contacting state, local, etc. officials, trying to get our voice heard. I recently ,received an original, not a canned copy, letter from a Dr. Singh, Chief Medical Officer, Inter-Agency Task Force, whatever this is. However, he mentions this hearing of May 9th in the letter. This was forwarded to him from a letter I had written to the White House, so sometimes people listen. We need these guidelines abolished, not reworked. Since when should any federal agency come between a patient & a doctor. Wasn’t enough interference already there before this started. I live in Virginia & they of course, have made these guidelines into law, being the idiots they are. I’m not sure at this point what to do except, politely, of course, keep complaining & writing. I realize that it’s already too late for some, this should also be pointed out. I read somewhere, don’t know the facts of it, hard to check out, but at least 24 of our vets are committing suicide a day, this being the direct correlation. I know the VA has come down really hard on denying our vets opiates. Never called them this before now, always just referred to them as pain meds, oh well. If there’s anything else we can do, tell us.

Marilyn

Max Beichert

To the commenter who was able to negotiate a 5 mg increase in his pain medication dosage, be advised that I have consistently been taught by pain management specialists where typical opioids are concerned, oxycodone being an example, that for an increase in an existing dosage to be experienced as “effective” (other than for possible placebo effects) requires a 50% or more increase over the amount that has failed, or to quote one such doctor: “you might as well be taking ‘TicTacs’.” That is because the efficacy of pain medication is not in a linear proportion to the dosages, far from it, in fact. Therefore, unless the posting patient was previously taking no more than 2.5 mg, an increase of 5 mg will provide no additional perceived pain relief. But it will minimize the doctor’s likelihood of any additional notice of a state medical review board, etc. When you don’t experience the desired relief, confront the doctor. Others, be forewarned, and thus forearmed.

Ali

I am very skeptical about any changes being made to return our lives to normalcy.
As a retired RN I’ve seen our government respond to the nice
patient’s because the govt negligence is kept to very low key. They listen, respond appropriately to meet patients need, write remarks down, appear totally sympathetic, and when the patient leaves the only positive feeling is from the patient that has just been pacified. Been there done that.
Being a septagenerian I’ve seen many government agencies carry on with not doing duediligence to repair a travisty such as agent orange. I had very personnel interaction took years for the government to change there denial. Very close loved one ❤️ died before the government turned it’s wheels in the right direction.
Deaths from the government decisions never recorded for public to see but let a physician be charged you’ll see the government will have every stastics of his accused wrong doing. The deaths from agent orange is only one travisty of negligence the government has allowed to happen. There are many times studies done by our government was blantly done without any duediligence to the citizens it was affecting.
I pray a nice cordial approach will
Change the course of these guidelines for patients with intracable chronic pain.
Each day becomes a life planned around profound pain and patient’s see no relief in sight of the future. Each day these guidelines have become more and more a scene of suicide’s, profound depression, dehumanising, bullying, and physician rejecting intractable chronic pain patients.
The defining line of Opoids causing addiction, abuse, and misuse has crossed over to the compliant intracable chronic pain patients in defining there use to help them have a quality of life.
Does a compliant patient who is told you can’t stop taking because your addicted to opoids truly an addiction or a medication that is used appropriately to control pain
and give quality of life?

Cindy

In reply to Thomas Wayne Kidd’s below post —

I have been printing the articles about the new FDA and CDC statements to bring to my next pain manager appt, and I”ve printed other relevant articles for him in the past. He’s so busy and I dont’ know how much time he has to stay current.

His info about medical marijuana in FL was wrong, and, when he first told me about the 90MME standard, he didn’t answer my questions correctly. I asked what govt agency imposed this and he said Medicare, which made no sense to me. I did a lot of my own research to figure out what was going on, and that’s when I discovered this website and others.

I’m on a forced taper and I’m hoping that the new info will get him to increase my daily dose at least a bit.

I also wonder if our horrible treatment violates the Constitutional ban on cruel and unusual punishments. I wrote this in my comment letter to the Task Force, and I have asked a couple of other advocacy groups about it.

Cindy

Recently, I sent a second letter to Senator Marco Rubio, about how hard it is for pain patients like me to get what we need due to the CDC Guideline problem, etc, and overly strict FL laws enacted due to the FL pill mill scandal.

In response, I got the same letter as last time, with him expressing gratitude for me sharing my concern about the opioid epidemic —-
“Thank you for taking the time to contact me regarding opioids and the devastating effects this epidemic is having on those struggling with addiction, their family and friends and the Nation as a whole.”

and more, a long letter which totally ignored what I wrote about.

The concern he said we shared was not the concern I wrote about — twice.
In fact, it was the opposite. Twice.

I understand their need for form letters, but sending a constituent a letter saying the opposite of what the constituent said, and pretending otherwise, is bizarre. Twice.

Any suggestions from anyone reading this would be appreciated. Thanks.

Gail Honadle

Our State Legislature has Adjourned until January. So NOTHING will get done at the state level in Tennessee to address the Draconian State Opioid Laws. 78 yr old Hip Replacement patients are getting Tylenol for their replacement Surgery and Rehab, then they are scratching their IDIOT HEADS WHY AREN’T they making progress? You know why lack of pain control. Same reason we are having Heart Attacks and committing Suicides. I was the designated Driver for my husband’s supposed last Colon Screen, it got delayed because of a longer than expected prior procedure. I’m a Gastro Patient myself. I waited until the PAIN was to the point I had to take the LAST LOMOTIL 2.5 mg pill I had to stop the spasms, FDA is inaccurate it doesn’t work for Diarrhea, it works on spasms. By the time they got him back to recovery I was ready to Puke, pass out from the Pain, the Gastro just callously walked away leaving me doubled over in pain over the trash can. I got told by a Nurse to go to the ER, which doesn’t know how to treat Gastro conditions and DOESN’T TREAT GASTRO PAIN AT ALL it doesn’t respond to normal pain meds, when I was IN the Gastro Endoscope center with a patient who had signed a NO Drive for 24 hr waiver just coming out of sedation. How dumb are they getting? We had a 1 hr drive in heavy traffic.

Prayer and God got us through. Sure didn’t have anything at home to treat the spasms. My new script which had not been filled in months as it’s as needed and Restricted, took a week to get a new Script was NOT ready for Pick up when I had my AB Ultrasound until next Tuesday to be picked up, they do not E-Script it. BTW when are you doing my Upper Endoscope for Barrett’s Esophagus Pre-Cancer it’s been over 2 yrs?

Rosalind Rivera

This is hopefully productive in terms of chronic pain sufferers in the kinds of treatments that we receive. My doubts as to a positive outcome are staggering and I also wonder how long it will be before appropriate measures will be taken. I also want to point out that in the interim, many of us will not be able to survive for that length of time
Rosalind Rivera
Lucerne Valley, Ca.

Thomas Wayne Kidd

Thank you very much for the article. I am wondering what if anything with be done concerning the blatant violations of our rights under the American with Disabilities act. All of us chronic pain sufferers have been ignored and our rights taken away from us. At my April 24th. appointment with my doctor I reminded him about my rights and showed him a copy of the Patients Bill of Rights. I also told him that they had broken about every agreement in the contract I was made to sign 14 years ago. He did listen to me and talked to me which is a plus. He actually increased my daily dose by 5mg per day of which I am grateful for. We absolutely must stand up for our rights dear friends. Be gentle and be not afraid to ask questions and expect answers. The CDC has said recently that many pain doctors misunderstood and took their recommendations to far. Remind your doctors that we are not criminal and deserve better treatment than what has been happening for the past few years. Ya’ll are in my prayers. Thanks again for the good work. God bless all.