FDA Chronic Pain Hearing is Monday – Are the Media Starting to Get It?

FDA Chronic Pain Hearing is Monday – Are the Media Starting to Get It?

By Ed Coghlan.

As the US Food and Drug Administration prepares for a public meeting on Patient-Focused Drug Development for Chronic Pain on Monday (July 9) it appears that the mainstream media are beginning to understand the other side of the opioid story.

Federal agencies—led by the CDC from a policy point of view and the DEA from enforcement—have been pressuring doctors, pharmacists and insurers to reduce opioid prescribing, under the impression that the opioid “crisis” was being fueled by overprescribing.

This will be a big topic at Monday’s FDA meeting. The agency says it is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies.

We should all listen in and, where appropriate, participate.

At the National Pain Report, we’ve been wondering when the media would begin to understand that the crackdown on opioids—aimed understandably at opioid misuse—is also actually punishing millions of chronic pain patients who use opioids to manage their pain.

Here’s some of our reporting on the media and opioids.

In recent days, it appears that the media have begun to see there are at least two (probably many more) sides to the story.

USA Today had a story in the past week that explicitly wondered about the impact of the opioid crackdown on the chronic pain community.

Read it here.

And then this week, Rick Lunkenheimer opined in Huffington Post about why people suffering from chronic pain may need opioids to manage their pain. He said they may be dangerous for some, but they help him live his life.

Read it here.

One of the smartest people in this field is Michael E. Schatman, Ph.D. who is Director of Research and Network Development at Boston Pain Care and the Department of Public Health & Community Medicine at Tufts University School of Medicine. He thinks the chronic pain story has been dramatically unreported. Here’s what he told the National Pain Report.

“For too many years, the mainstream media have dwelled on the “evils of opioids” – buying into the anti-opioidists’ rhetoric and hyperbole. During the prescription opioid crisis, there were nevertheless millions of individual patients whose quality of lives were improved dramatically by rational opioid prescribing. Tragically, the media failed to share any of these “feel-good” stories, choosing to follow the policy of “if it bleeds, it leads”. Patients and pain care provided are excited to see the mainstream media finally stepping up to the plate, reporting more frequently on the life-shattering impact of recent draconian state laws that have resulted in millions of patients who were faring well on chronic opioid therapy without aberrancy being involuntarily tapered off of these life-saving medications”.

Remember to sign up for the FDA meeting on Monday.

https://www.fda.gov/Drugs/NewsEvents/ucm603093.htm

Authored by: Ed Coghlan

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Jen Charles

Those who have been mouthpieces against opiates, due to their relationship with the rehab industry and addiction medicine implant devices (i.e., funded by Big Pharma and rehab centers) have much, much deeper pockets and contacts than we do (look up Advocates for Opioid Recovery). This hearing was my big hope until I heard one man say that he testified about pain in 2012 to the FDA. Wow, the FDA sure listened and acted on that, in the years since! There were mostly rousing voices of those for whom opiates has meant a new lease on life, but can no longer access them. All well and good. But what will/can be done? About all we heard from the FDA panel was not to blame THEM for all this. Look how far the Gay Mens Health Crisis and ACT Up had to go to just to get early access to AIDS drugs! And they staged many protests and marches that were fueled by a major plague which was being ignored. We do not have to overcome the hurdle of being gay, but we are not as organized, and many of us are profoundly disabled or have financial challenges which keep us from the activism this issue demands and we would like. The FDA *could* deliver a rule to exempt chronic pain patients who have demonstrated responsibility with opioids, from the draconian CDC recommendations, but will that stop the DEA’s and individual state’s intimidation of doctors who prescribe opioids? Doubtfully. Law enforcement’s leash is too long and their mission too ingrained to reel them in any time soon. I hate to be negative, but these are the realities. Store an attorney’s number and do a tutorial on the Deep Web. Or agree to a pain pump or spinal cord stimulator, which is an industry that has and will continue to profit from this “crisis”, as have many other market segments. When Medicare begins their rule of only 7 days’ opioid prescriptions in January and everyone votes on the new dictatorial House opioid bill, then Senate, as who wants to be seen as opposing an anti-opiate bill, the last nail in the pain management coffin will be hammered in. Medicare will be able to toss us into rehab or require we take Suboxone, as we all will be viewed as addicts to “fix”. Other countries seem to be able to fix issues on the turn of a dime, yet we have a long history of refusing to admit mistakes, until decades or centuries later. Sadly, I would leave this country if I were able.

HOWARD HEROLD

FINALLY, THE GOVERNMENT WILL REALIZE THAT CHRONIC-PAIN IS NOT A JOKE, BUT A REAL DESEASE !!!!! THANKS

On a note of hope, several associates of the Alliance for the Treatment of Intractable Pain will be physically present at the FDA meeting and actively lobbying for a fundamental insight that has been missing up to now in almost all public discussion of the so-called “opioid crisis”. The origin of our major US public health problem with addiction and overdose is not medically prescribed and managed pain relievers given to people with chronic pain — and never was. And the published statistics of the CDC itself PROVE this insight beyond any rational opposition or argument. The contribution of medical opioids to our so-called epidemic is so small that any effect is lost in the noise of street drugs. The number one barrier to effective pain management is not addiction. It is misdirected public policy that seeks to control the effects of street drugs and social despair by restricting medically managed drugs and CREATING more despair.

This insanity must stop!

Patricia Haas

Because of the so called opioid addiction I have never been given them. I have had chronic pain for 4.5 years. I feel that if I had them I would be able to lead a better life. My pain keeps getting worse and yet nothing is done for me but physical therapy which has sometimes made my pain worse. There is so much to this it is hard to explain. I have a limited amount of things I can do.

Csmith

any of you know a doctor can not inflict due harm? And do you know a patient has rights ? It is called “patients bill of rights”… inthis it states
“a patient has the RIGHT TO BE PAIN FREE”!
And that the nurse was told they HAVE TO FOLLOW…per state guidelines “ when they have a patient that we are to treat pain as the fifth vital sign”!
Do you know… that your physician CANNOT HE CANNOT BY LAW JUST STOP PRESCRIBING YOUR MEDS WITHOUT A 30 day taper even if you got caught or it was proven u were abusing your pain meds they should have a script available see you for emergencies for those 30 days or until you found replacement dr…! If they do just stop prescribing without just cause …you turn him /her in to the board of medicine with their licence file also for abandoment charge! He could ne fined .. lose their medical license &/or be fined as well… most drs just need a polite reminder of yr rights ! Also DID YOU KNOW THAT ALLLLLL HOSPITALS HAVE A PATIENT ADVOCATE and if you are finding yrself suffering w pain in a facility make sure youget them in yrroom right away!!! They should be 1 in facility 24 /7 …! Hospitals in LTC /skilled nursing ise yr social work or abudseman for yr rights…
(meaning this law is only to effect acute pain NOT non malignant / non acute pain) soooo dont let yr dr tell u other wise!!!
IF I WERE YOU GET AN ATTORNEY In DISABILITY TO PROTECT/advocte for you ..there are quite a few who will take case free until disability comes thru!
Good luck
CPP- RN

Is there a way to watch the meeting without installing the app on your link. I’m not allowed to install apps and the memory is almost full and it won’t let me delete many things when I try.

Cindy Deim

I’m not understanding how to get into the webcast. Could you please explain that? I would greatly appreciate.
Thanks you,
Cindy

MrMarty

I will be listening intently for the entire hearing. Thank you for everyone that has added input or physically being there today. Your courage and commitment and strength has helped many of us who can’t Physically do as much as we wish. But we can write & call our elected misinformed, profit minded decision makers. Call them out on their incorrect data , misguided goals to help continue to confuse the media mouth spew. We’re all in this together we will not lose this fight if we stay together. #NOPAINRALLY

I really hope that not only the media gets it, but the morons in government. It took British Columbia 2 years to turn around their draconian opioid policies –based on our CDC lies– and I hope it doens’t take that long here. I admit I’m not optimistic that our government is even capable of admitting mistakes.

Very sick

I’m praying and many other chronic pain patients and caregivers are doing the same. Hopefully, some positive actions will take place. As the POTUS often says, “We will see”. Thank you Ed, for this article and links.

Terry

A very good article, as usual Ed, about the chronic pain patient’s fight for life. Unfortunately it is the government who initiated these guidelines and ruined millions of lives in one fell swoop, and as we all know, once the government imparts their agenda and guidelines, it’s the average Joe who pays the price. I can’t quote even one instance when our government changed laws, guidelines or mandates and then walked it back, admitting that they were initially wrong and there is now evidence that their decision(s) will be reversed, it’s NEVER happened and it never will. Our representatives and senators, who by the way are supposidly working with our (citizens), best interests at heart. The problem with the so called “opiate epidemic” is as always, not what the people want. Our government has gotten so divisive and self serving that what the constituents want are NOT even part of the equation anymore. So this “dog and pony ” show coming up July 9, is a big joke and we the people are the butt of their joke, as usual. I may sound bitter, angry, disillusioned and unconvinced that anything will come from the “show” Monday, July 9, but that’s what I am. So I urge everyone NOT to hold out any hope that the government will change the CDC guidelines, to reflect the chronic pain patients needs, to help folks get their lives back and actually listen to the REAL authorities on the subject, look at the actual and correct statistics that are available. They’ve been presented these actual statistics and still refuse to admit their original findings were incorrect, our government doesn’t make mistakes. So go to the big meeting on Monday, cheer, complain, carry signs of protest if it makes you feel better but at the end of the day, nothing will come of it. Do you really think that even if by some miracle, they reverse their findings and change the guidelines back to how they were originally, that your pain management doctor is going to reinstate your meds to the previous amount you were prescribed? It will NEVER happen. So unfortunately after months of fighting, blogging, emailing my state representatives and senators and fighting the good fight, I am throwing in the towel and getting used to my new life and I suggest that you do as well. Good luck to all of my chronic pain brothers and sisters, and God bless you all.

Maureen M.

I will be praying for Dr. Lewis and others on our behalf to be heard loud and clear and for positive changes to come of this meeting, in a major way!!
Thank you all involved for your tremendous efforts on our behalf.

Kris Aaron

The media may be starting to “get it”, but politicians won’t willingly give up their favorite whipping boy. Being opposed to ANY opioid use and ranting about their “destructive and addictive” qualities is an easy way to get votes from people who have no clue what chronic pain can do to the human mind.
Some brave lawmakers can be persuaded that opiates are the only way life is liveable for pain patients. Others don’t care — they don’t believe there are enough of us to swing an election, which is all that matters to them.

Thank you Mr. Choglan. “Finally” some good news from people who can make a difference and it’s about time! Of course I will forever be thankful to Mr.Robert Rose, our tireless veteran who in my opinion went above & beyond the “call of duty” more times than he should have, Dr. Lawhern who has relentlessly advocated for us and Dr. Lewis who most recently stepped in after years of us feeling abandoned. Wouldn’t it be wonderful if the smartest man on this particular subject would contact more than the National Pain Report when it comes to these thing’s! I certainly hope so. I will continue to pray to God that these stories become more abundant and the sooner the better. That these stories spark the interest of our government and the public as did the Opioid Injustice that has literally killed so many good people. It’s a tragedy when someone feels driven to take their lives due to the fact that they can no longer stand to live with physical debilitating pain that eat’s away not only at your body but your mind as well; especially when all of this could have been so easily avoided. If only our government would have just stopped and thought for a moment. It’s a tragedy when there are people on this earth that are still living who have become dead inside only because they are sick and have literally been abandoned. The stories I’ve read still haunt me and will for the rest of my life. The many tragedies of the opioid crisis don’t stop there either. It has affected many wonderful doctors,nurses and pharmacist’s who worked very hard and studied many long hours to only find themselves, reprimanded, fined, jailed, and dismissed from their positions because they were only trying to do their jobs, to save lives; not kill them as our government has. I can’t believe it’s gone on this long in a country that’s supposed to be so educated, so proud, yet so very, very idiotic not to mention heartless. We’ve told our stories and those of us that are still living can only hope and pray. There’s nothing else left for us to do……

Matthew J. Smith

Do people need to register somewhere if they want an opportunity to speak at the hearing ?