Deadline for Comment Has Passed – Pain Patient Advocacy Groups Add Their Voice

Deadline for Comment Has Passed – Pain Patient Advocacy Groups Add Their Voice

The deadline for public comment on the HHS Pain Task Force draft report has passed. The 90-day period expired at midnight eastern time on Monday April 1st. Last we checked, over 3,500 responses have been received…a number that may swell to 4,000 by the time all are tabulated.

One that was filed on Monday caught our attention because it was submitted by eleven pain advocacy groups. We’ll list the organizations at the end of the story.

Here are the highlights of the letter (thanks to US Pain Foundation’s Cindy Steinberg for the summary).

  • While the report raises the issue of suicide in those with chronic pain it does not adequately identify ways to address it; we recommend ways to do that
  • Patients must be considered an active member of the care team and their preferences as well as their limitations caused by factors such as geography, provider workforce, transportation, family responsibilities, socio-economic status and work schedule, if they are able to work, must be considered when developing a care plan
  • Develop outcome measures based on functionality and quality of life rather than just decreases in pain score and reductions in opioid use
  • There is a lack of guidelines and/or resources for patients who experience forced tapering or abandonment which is much too common at present
  • Establish guidelines for providers on how to handle the situation in the case of an unwanted test result
  • Language matters and can worsen stigma; terms like “catastrophizing” and “maladaptive behaviors” used in the report are pejorative and judgmental even if they are currently used frequently by providers.
  • Add caregivers as a special population acknowledging the vital role they play as well as the stress and anxiety they may experience in caring for family members or significant others with pain

The letter was signed by the following organizations:

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 Foundation

RSDA (Reflex Sympathetic Dystrophy Syndrome Association—CRPS)

The Pain Community

The U.S. Pain Foundation

To read the whole letter, click here.

If you belong to any of these organizations, send them an email thanking them for their advocacy. If you have submitted comments to the HHS, let us know what you told them.

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Authored by: Ed Coghlan

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Chris Ward

It’s July 25 and it’s not being imply in .Hospitals are not helping the sititution in Tex or Ark

Current Resident

I posted this reply on another article and put it here as it seem to apply but also in case someone who didn’t read before may like to.
Not long ago a patient that was legitimate and well documented could receive whatever form and type of opiate that worked to reduce pain. Now these patients are being denied medication and told it’s a psychological addiction only to be treated with opiate withdraw medication and psychiatric therapy. These patients need strong opiate medications for severe nerve pain and cancer pain along with many other painful conditions that will never improve. Most of these patients are too ill to go to street for real opiates or to self advocate. Without these medications the patients are left with no options, they will end their suffering by death. The government officials are well aware of this. It is by their own design that this entire drug situation exist. Their motivation is wealth and power not compassion or understanding for the suffering.

Current Resident

Two years have passed since sixteen of our favorite democrat senators ordered the DEA to stop the manufacture of all injectable medications. Jeff Sessions approved the senators’ move and President Trump signed the order. This was included in the current anti-drug bill that pain patients have been enduring or haven’t survived. After some months passed the time came that the drug companies could get an increase on prices, and with advocate pleas some drugs were ordered to begin limited manufacture with most medications only going to hospitals. Since this move didn’t help our nation’s ill, this looks to be an erroneous political move that may have left many of us wondering why our elected representatives have done this thing that is not in the best interest of the people. The answer may be just as simple as the usual which is money but it involves much more than dollars. As someone else pointed out, there is entire shift in demographic being engineered right in front of us that is leaving behind our sick, elderly, veterans, and other groups that may no longer contribute in the way needed by our elected. Not only is this happening in the good old USA but in Europe as well. There are many theories as to what this shift will accomplish and for whom but whatever that is means a deadly demise for the nations ill and other citizens living on the last of their dignity and whatever crumbs allowed to be thrown to them by the wayside.

Barbara, both Republicans and Democrats are in pain and had their medications cut. This started under Obama. Once the alphabet agencies get their orders it goes to their heads and makes them think they are gods. Both Presidents bought into what lobbyists wanted. Someone else is out to get millions for rehab centers and different medications. Blame all politicians not just President Trump.

Researcher

I stopped reading on #1 not addressing that at least 10% of suicides are CPP’s.
Suicide is preventable. When will you learn?
The government DEA FDA etc etc etc POTUS are behind these deaths plus the addicts illegal drug use deaths …FENTANYL being actually made of heroin & amphetamine…why the “save” drug doesn’t work, it’s not opioids causing ANY deaths, & the government has plainly & very PUBLICLY stated they are reducing the population. In writing. It’s on wikipedia. With sources to the original document. DEPOPULATION FOR SUSTAINABILITY in the G8 countries & the US is leading.
How are they doing that? Uhm, didn’t Hitler kill the disabled, sick, gypsies (today addicts & homeless) first.

HOWARD

MY MEDS HAVE BEEN CUT IN HALF, IM 66 AND I DON’T PLAN TO LEAVE THIS WORLD ANY TIME SOON. I JUST WANT MY PAIN MEDS LEFT ALONE, IAM A DISABLE VETERAN, THE VA DOSEN’T HELP YOU AT ALL.

I first really have to cringe when I hear someone want to point fingers at one person.This has to do with career politicians doing whatever was best for them at the time.There is such a long list of government getting involved in things that they just look at as a whole instead of how each is affected.I live with chronic pain from injuries and birth defects.Absolutly no one accept me knows what I physically feel.I through the years have got to know my body and,”even when I had my meds before they tapered them” know when things are wrong,worse,better or different.For any to say this is the way it is for all is just wrong!.You name it and I have done it about and came to a point where I learned to live with what I got in meds and no more and how to keep myself functioning in the best way so I could have some quality of life,family and friends,and being a part of the community.There is a big difference to the people that is starting out with pain and addicted to people that has been through a ton of stuff to find out if they are real chronic pain people and haven’t had any problems for years with their meds.Why mess with what has been working on some for long periods of time?Who was they hurting? “The ones that said that’s not the normal for all??.” Like the ones that said someone like Trump could never become President! We are all individuals and should be treated that way.I know that time takes time and to think that all have to be treated like the others is just not going to work.There is a great saying I have known and it is “What keeps a person in everlasting ignorance?It is to have contempt prior to investigation. I have really found out what torture is that I have never really payed that much attention to.When I was able to be a part of life again after not being able to be part of for years and then it was given back at least some for a while (which you become so greatful for!) then to now paying to go in and tapered down to become worse is torture!.

Cindy

I just read the attached letter – most of it. I’m so glad about the section about unwanted test results, although I think in this NPR email, that term should have been explained. It’s not clear what that means. And if I hadn’t had my horrid experience, I’d have not even suspected its meaning.

My former pain manager terminated me, with no notice, due to a tox screen which had an impossible result.

I called to make my next monthly appt and was told I was no longer a patient. Which made no sense. Finally I was told that my last screen showed very high alcohol. But, I never ever drank alcohol.

My crying and hysteria on the phone got me nowhere; they refused to allow me to come in for an immediate tox screen or to see the doctor; and when I said I’d come and sit in the waiting room until she’d see me, they basically said that if I did, they would call the police.

I was terrified that no other pain manager would ever take me on. Luckily, I ended up with someone much better.

And my new manager is a man. The horrid one was a woman — which I had insisted on, since I thought that with my type of pain especially, a woman would have more empathy. Boy was I wrong. Her office always made tons of admin errors and she didn’t care at all when I told her the endless problems — hugely long waits; lost appts; not sending requested medical records over and over and then getting mad at me for my continuing to ask for them when it was their fault they never sent them to my PCP. And more.

As I write this, it just occurred to me that the error with my tox screen most likely did not happen at the lab, but happened at her horribly run office.

Rose Scalise

My Draft Report Comments-Part 1
GENERAL COMMENTS
1) Do not mix the governing of pain care patients and the governing of illegal drug users. Too much of the discussion concerning chronic pain management in the Draft Report intertwines legitimate pain care (patients, providers, and stakeholders concerned with legal sources of prescribed controlled substances) with the illegal drug use environment (illegal drug users/addicts, illegal drug dealers, and illegal sources of controlled substances). Even statistical mortality rates of ODs are unclear as to whether they reflect only patient care populations or illegal drug user populations or both added together. This is a huge problem because false conclusions and actions may result and have resulted. Also this intermingling of spheres perpetuates stigmas, leads to wrongful administration of patient care or lack thereof, creates distrust, and disrespects chronic pain patients along with those involved in providing care. In the last several years the priorities of those governing the pain care management environment have been put ahead of the patient care priorities of the chronic pain patient. Chronic pain patients should be the priority stakeholder, but we are in the “back seat” so that the needs of other stakeholders can be met. This has caused unnecessary suffering to chronic pain patients and damage to the providers of that care (even to the point of drastically reducing access due to the closing of pain care providers or their quitting). So all significant topics of the draft report should have subsections as follows: a) Chronic Pain Management Care, b) Acute Pain Management Care, and c) Illegal Drug Use Environment. Addressing each of these spheres separately ensures that all standards, developments, applications, and/or requirements are clearly defined and aimed at the appropriate environment.
Comment awaiting moderation

Rose Scalise

My Draft Report Comments-Part 2
GENERAL COMMENTS
2) Correctly label and separate the governing of pain care patients from the governing of illegal drug users. CARA (Comprehensive Addiction and Recovery Act) is the legislation that created the task force that wrote the draft pain report. The name of the act itself creates an unfavorable impression of pain patients. “Addiction” is the overall category into which the subset of pain care patients and the subset of illegal drug users are equally placed, and therefore similarly characterized. This creates a wrongful framework for patient care. There is a vast difference between an addict who takes illegal controlled substances to get high and a pain patient who takes legally prescribed controlled substances to attain a reasonable quality of life (which I do not have at this time). There ought to be separate standards and laws for the pain patient care environment versus standards and laws for the illegal drug use environment. Hopefully, clearly separating these two environments when issuing standards and regulations can be corrected at some point in time. (Remember that illegal drug users do not routinely get drug and alcohol testing, pill counts, and prescriptions reported to data bases. We are constantly monitored. We should not be lumped in with drug users that go to a dealer, buy drugs illegally, go home, get high, and unfortunately sometimes die.)
3) Always prioritize patient care before the agenda of other stakeholders. A consequence of stakeholders being the priority is that the doctor’s judgment has been effectively over ridden and the pain patient pays the price with more and increased suffering.

Rose Scalise

My Draft Report Comments-Part 3
GENERAL COMMENTS
4) Give strongest weight to benefits, risks, outcomes, and cost of pain patient care. To avoid opioids, many interventions can result in more damage to a pain patient, higher cost, infections, and complications. Often more complicated measures are being “pushed” on chronic pain patients because of fear and intermingling attributes of the patient care environment and the illegal drug use environment. There is a certain “hysteria” surrounding the pain patient and opioids because many stakeholders mix problems associated with illegal fentanyl, heroin, cocaine and other illegal drugs. Opioids are cheap in comparison to other drugs and relatively safe. (a.) I am 66 and have been a stable chronic pain patient for 12 years. After retiring, I was tapered to 60 mg oxycodone and 100 mg tramadol per day. Because of the reactions to the “opioid crisis, over half my medications were cut. As a result the quality of my life is over half reduced, and due to reduced activity I gained over 30 pounds. This definitely is adverse to my health. b.) For years, I was given bottles of Naprosyn and as a result I developed hypertension for which I must take more pills to manage. Was it worth staving off opioids for a couple of years…not to me. Hypertension may be the cause of my ultimate downfall and death. c,) Also, some providers are using duplicated care when established patients are transferred as a means to profit. After moving I wanted to transfer my pain care to be closer to home. The new provider wanted me to go through everything I did over 12 years ago such as expensive diagnostic testing, risky injections that made me worse, trials of a variety of medications, etc. All of this was in my medical records, but he would not accept it. This is an unnecessary additional risk to me and an unnecessary cost to the third party payor.)
Comment awaiting modera

Rose Scalise

My Draft Report Comments-Part 4
GENERAL COMMENTS
5) Dispell unproven maxims. I have heard this over and over: “Frequently people get hooked on illegal opioids because of prescribed opioids for an episode of acute pain such as post injury or postop. In my experience this is not true. I was given 5 mg Percocets for several days when I was 18 for post wisdom teeth extraction. At the age of 26, I was given 10 mg Percocets for a week postop for a large and deep pilonidal cyst excision. In my mid-40s, I was given oxymorphone and then 10 mg Percocets for a week post knee surgery. Finally, post abdominal surgery I was given oxymorphone for a week and then 10 mg Percocets the second week. After my medication regimen was complete, I did not feel a need to go look for illegal opioids. And, I did not feel any discomfort nor withdrawal.
6) Create a definition section. For example, on page 5 second paragraph there is footnote 19 which references “opioid misuse.” These types of terms must be defined and include how it will be measured.
7) Keep mortality numbers and statistics separate for each group–the chronic pain care population, the acute pain care population, and the illegal drug use population.
8) Develop via diagnostic coding and procedural coding a list of indicators for procedures and morbidity which should be kept on an ongoing basis so that various treatment approaches can be objectively assessed such as complication rates, infection rates, common adverse effects, and secondary diagnosis that happen as a result of chronic pain management. For example, as a direct result of long term Naprosyn treatment, I developed hypertension.
9) Consider a mission statement for the Draft Report so that all recommendations, goals, objectives, and requirements or regulations are in direct support of the mission statement.
Comment awaiting moderation

Rose Scalise

My Draft Report Comments-Part 5
SPECIFIC COMMENTS
Page 17 Recommendation 1a: Add: Upon initiation of opioid therapy, discuss PDMP check with the patient who is being checked educating the patient concerning the database, the fact it is statewide, multistate, and national. (It will be at some point. Chains such as CVS already are.) Inform the patient checks are periodic at any time during opioid therapy and that all prescriptions are also reported.
Page 17 Recommendation 1c: Delete: “Physicians and other health care providers should” Add: Capital E to engage so that it reads “Engage patients to discuss…”
Page 18 Add: Recommendation 1j: Ensure security of patient data, restrict access, and require PDMP systems to have an audit trail for each access to minimally include accessor, time, and date so that if there is any misuse of patient identifiable data in conjunction with opioid prescriptions, immediate identification of who accessed the data and when can be done. (Too much sharing of opioid data puts patients at risk from those who would use their data access for nefarious purposes. For example, I must often educate pharmacy staff to never say oxycodone when speaking to me about my prescription. I tell them there are people who would kill or mug me to get it.
Page 19 Recommendation 1a: Add: Educate patients at onset of opioid therapy about PDMP checks, UDTs, the role each plays, and that periodic applications of these measures may be done any time during opioid therapy.
Page 19 Recommendation 2b: Delete: “Physicians and other health care providers should” Add: Capital E to educate and extra words at end of sentence so that it reads, “Educate patients on use of UDTs and their role in identifying both potential inappropriate use and appropriate use at onset of opioid therapy as well as any time during opioid therapy.”

Rose Scalise

My Draft Report Comments-Part 6
SPECIFIC COMMENTS
Page 19 Recommendation 3a: Delete: In second sentence delete “Treatment agreements should” Revise: Second sentence to read, “In treatment agreements include the responsibilities of both patient and provider to include at a minimum satisfactory quality of life concerns, satisfactory function, satisfactory UDTs, and satisfactory PDMP checks.”
Page 22 Add: Recommendation 1d: Require positive coverage decisions across third party payors and charge caps as an average so self pay patients can have the benefit of reimbursement limits enjoyed by third party payors.

And that is all she wrote. I was unable to review pages 23 to end and still get my comments submitted before midnight 3.31.19.

Rose Scalise

Thank you Ed for summarizing the letter. I am reading it and it is very good. I will return with supportive comments on some of the significant points they made. For example one of the points you emphasized from the letter is about suicide and the fact that chronic pain patients want to end the pain and not their lives. I would add that we also want to end being treated like a criminal and end the discrimination and prejudice we experience. In addition, I think there is an unwritten standard that goes something like this: If you have ever had a suicidal thought, you are high risk and therefore not a good patient to include in my pain management practice. Of course I have never had those thoughts.

I submitted my comments on the draft report before midnight 3.31.19. I hope it is OK for me to share & post them here. It will take 6 postings.

Alice Carroll

Wow! This is awesome. These groups have done an excellent job putting forth what was missing or not emphasized enough. I sincerely hope after all this work that Congress takes time to read the Task Force Report and to educate themselves as to what the Chronic Pain Community’s needs are and stops the discriminatory behavior in Medicare and Medicaid coverage towards those living with chronic pain.

The CDC also needs to be directed to quit the propaganda and start interpreting data realistically rather than cherry-picking and manipulating it to their own bias. If they cannot do that they need to be replaced and funding pulled.

My fear is that these big lawsuits are going to open the floodgates to more propaganda and State and Local governments are going to do their best to demonize opioids so that they can win in the court of public opinion and thereafter the lawsuits they hope will rival the Tobacco Settlement. By acknowledging the successful use of opioids for long-term chronic pain we fly in the face of the premise that these drugs should never have been approved for long-term use. This is what the lawyers must prove in order to win several of these lawsuits and I believe what led to the resignation of the FDA Chief, Scott Gottlieb. (From 60 Minutes, February 24, 2019, Did the FDA Ignite the Opioid Epidemic?)

David W Cole

Thanks Ed, and a big thank you to all the agencies that participated in these recommendations. We all know the CDC guidelines are lacking in evidence-based treatments as well as no reliable scientific data to back up anything in them. That’s what happens when the CDC and 10 addiction specialist right recommendations for pain patients. In my opinion the CDC guidelines have murdered thousands of pain patients and tortured Millions. Now I just wonder how long Congress will sit on their hands before anything is done, how many more patients will die from suicide, or be forced to live being tortured. The only thing I wish they would have mentioned in their recommendations is we need are doctors protected from the DEA. Doctors cannot be held accountable for a drug addict that slips through the cracks. Doctors are healers not dealers. Of course we had a few bad apples, a lot more than I thought, however the number remains relatively small to the number of doctors that we have.

Barbara Snow

I have read the whole report, I wish you could have added turn off brain center’s that signals pain? I know you can’t but what a great option. My situation is I am a chronic pain patient, who is a caretaker 24/7 to my father-in-law, in Florida. A state with no heart. The task at hand will be next to impossible with Trump in office. Sad but true. I think about suicide every day. Some R&R would be nice. No instead I get to do all the thing’s required to make a house run, everything! Just that stupid 40mgs a day. Again I’m going to emphasise that State’s should not make their own dosing rules. And the FDA has no business in our health decisions. Also I habe found some wonderful self healing hypnosis meditation and heal while sleep meditation videos on YouTube and mind valley. Good luck.🙏