Tag Archives: opioid

CDC Opioid Prescribing Guidelines–A Threat To Pain Patients’ Lives

21 Sep

by Heather Grace IPJ Staff Writer

On September 16, the Centers for Disease Control and Prevention (CDC) did something dubious. What’s frightening… it’s likely to have a life-altering impact on all chronic & intractable pain patients. Was this a deliberate act? I’ll let you be the judge.

They decided to release/discuss the CDC Opioid Prescribing Guidelines that will go into effect in 2016. These guidelines were designed to further curb opioid abuse. But in fact, they seem to be about arbitrarily curbing treatment.

In order to even view the CDC’s draft of opioid prescribing guidelines, you had to attend the webinar. They were not downloadable. They recorded the webinar, but are not releasing it to be watched for those who missed it.

And to comment on the CDC’s hard-to-access proposed guidelines, you had just one day. No–that was not a typo! Just one day was allowed for comment! Comments had to be in by 5pm eastern on September 17th, which meant people like me and other west coast advocates did not get to comment. Unfortunately, I didn’t find out until it was too late that it would close at 2pm my time. How many others wanted to comment, but were unable to?

A final version of the CDC’s guidelines will go into effect 2016 onward. Based on what I’ve read/heard from an expert in the field, drastic changes are ahead. We should anticipate a very low arbitrary limit on pain medication for all patients nationwide, even the most seriously ill. What’s most troublesome–the CDC intends to set that limit even lower than the 100mg/day now in effect in many states. (See #5, below.)

The draft guidelines are outlined below thanks to the Pain News Network–thankfully. They will not be available in draft form on the CDC’s website, despite the fact that guidelines will be discussed from now through December.

CDC Draft Guidelines for Opioid Prescribing

  1. Non-pharmacological therapy and non-opioid pharmacological therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks.
  2. Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.
  3. Before starting and periodically during opioid therapy, providers should discuss with patients risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.
  4. When starting opioid therapy, providers should prescribe short-acting opioids instead of extended-release/long acting opioids.
  5. When opioids are started, providers should prescribe the lowest possible effective dosage. Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.
  6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of short-acting opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days will usually be sufficient for non-traumatic pain not related to major surgery.
  7. Providers should evaluate patients within 1 to 4 weeks of starting long-term opioid therapy or of dose escalation to assess benefits and harms of continued opioid therapy. Providers should evaluate patients receiving long-term opioid therapy every 3 months or more frequently for benefits and harms of continued opioid therapy. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids when possible.
  8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid-related harms are present.
  9. Providers should review the patient’s history of controlled substance prescriptions using state Prescription Drug Monitoring Program data to determine whether the patient is receiving excessive opioid dosages or dangerous combinations that put him/her at high risk for overdose. Providers should review Prescription Monitoring Program data when starting opioid therapy and periodically during long-term opioid therapy (ranging from every prescription to every 3 months).
  10. Providers should use urine drug testing before starting opioids for chronic pain and consider urine drug testing at least annually for all patients on long-term opioid therapy to assess for prescribed medications as well as other controlled substances and illicit drugs.
  11. Providers should avoid prescribing of opioid pain medication and benzodiazepines concurrently whenever possible.
  12. Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.

Patients: Prepare to Decrease Pain Med Dosages

Despite the fact that I have to be on pain medication for the rest of my life due to severe constant pain from a central pain syndrome / a spinal cord injury, I was advised by my doctor to prepare to decrease my dose, as it is a likely outcome. I’m really worried. I know people I’ve gotten to know like family will die if we’re forced to conform to the these guidelines.

As for me? As strong as I’ve been, I see myself back “on that ledge” between life and death, contemplating suicide, just like I did before adequate pain care in 2006… if it ever gets to that. If the CDC decides they want us dead, and if they indeed force me back to *that* point in 2016 with these guidelines — the twisted, ugly dark place most people come back from — the world would know exactly why I took my life. I won’t allow stats-massagers to list me as an opioid death.

The thing is, I don’t *want* that to happen. I don’t want pain care to get any worse for anybody! But I’ll be silent no more about the fact that I’m terried… truly terried. Neither should you, if you’re reading this and feel the same.

The CDC said the guidelines were developed after a series of meetings with a core expert group and independent peer reviewers that the agency did not identify by name. However, I believe I have found the names of the peer reviewers, thanks to a hidden PDF on their site:

PEER REVIEWERS

Jeanmarie Perrone, MD
Professor of Emergency Medicine, Hospital of the University of Pennsylvania Director, Division of Medical Toxicology, Department of Emergency Medicine University of Pennsylvania
Expertise: medication safety, emergency department prescribing, substance misuse, use of prescription drug monitoring programs, toxicology, provider education

Matthew J. Bair, MD, MS
Associate Professor of Medicine, Indiana University School of Medicine
Expertise: pain management, geriatrics, non-pharmacologic treatments, mental health, veterans’ health

David Tauben, MD
Chief, Pain Medicine
Clinical Associate Professor, Department of Anesthesia and Pain Medicine
Department of Medicine Division of General Internal Medicine
University of Washington
Expertise: medical education, primary care, pain management

You can view the rest of that PDF on my site, in case they remove it.

CDC officials have long been critical of opioid prescribing practices and have repeatedly cited a study that claims over 16,000 Americans are killed annual by overdoses linked to pain medications. But is that true?

Those numbers are grossly overstated, according to my research. I have reviewed many documents on many sites other that Pain-Topics.org, but they have great data on *WHY* the stats are inaccurate/inflated. From my review of this issue, it is clear statistics on a growing problem means more money to fight that problem each year, when the “pie” of government funding is carved up. Perhaps a larger share will go to the CDC next year, thanks to this unreasonable set of rules they plan to force upon people in pain? How terrible that dollar signs are more important than American citizens–even those of us in severe, unending pain.

From my research, I’ve found that pain medication is being sited as a cause of death merely because it exists in people’s systems, even if they were a passenger on a 747 that crashed. Also, to increase numbers of supposed “opioid-deaths,” statistics are inflated by including deaths caused by dangerously mixing of illicit/prescription substances with the intention of getting high. These are not patients who are being treated for serious pain-related illnesses. These are, sadly, people trying intentionally to harm themselves–to create a chemical reaction in their bodies that is unnatural and dangerous.

Not to mention, despite the hype, pain medication abuse is not anywhere near the top 10 causes of death in the U.S.! So why are we the scapegoats? It has to be money… what else could it be? We aren’t hurting anyone. We avoid illicit substances. We beg for help. Repeatedly. Isn’t it time this “war on drugs” stopped making *us* its casualties?

MY QUESTION IS: ARE WE GOING TO LET THE CDC STEAL OUR PAIN CARE AND KILL US ALL?

They claim they will be using evidenced-based material in forming these guidelines, but they don’t talk about all the people who kill themselves because the pain is too much to bear. Nor do they mention all of the people with intractable pain who die due to lack of appropriate care in the emergency room, despite cries for help and pleading with ER docs to call their pain management physician. It’s happened 3 times this year, to people I know!

I suspect a lot of this so-called data comes from PROP (Physicians for Responsible Opioid Prescribing), an extremely controversial organization that has lobbied Congress and criticized the FDA for not doing more to limit access to opioids. Why do I say this? There’s a link to PROP literature calling for “cautious, evidence-based opioid prescribing” on CDC’s website, on a page discussing safe prescribing tools” (See it here, at the bottom of the page.)

In case they remove the link on this page, I’ve included a screenshot of the page, here (click to see larger image):
CDC-Safe-Prescribing

The email used to comment on this atrocity created by the CDC was opioidcomments@cdc.gov. I got an error message when I tried to comment after 5pm on 9/17. But I suggest you flood the CDC with complaints, anyway! Call the Centers for Disease Control at
800-CDC-INFO / (800-232-4636) or TTY: (888) 232-6348, Monday-Friday
8am-8pm eastern. Email them using their contact form: https://wwwn.cdc.gov/dcs/ContactUs/Form. Write them at: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329. View http://www.cdc.gov/contact/index.htm for more options.

Even Better: If someone has time, why not post a comment with the contact info for the peer reviewers, listed above? Let THEM know we’re mad as hell and not gonna take this… It’s time we united for the common good. It’s time ALL PAIN PATIENTS became PAIN PATIENTS/ADVOCATES.

Are you with me?


About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts!

24 Aug

“Advocating for Another” Carnival 2012 – Day 4

by Heather Grace IPJ Staff Writer

severe back painThere are plenty of things the average person doesn’t know about the pain community. Let’s focus on a really harmful myth: The stereotype about pain patients being a bunch of crazed addicts. It really rubs me the wrong way. Our reality couldn’t be further from the truth. And it’s time you heard some of the reasons why. Here we go:

First, I think it’s important to set the record straight regarding the myth that people with pain who are prescribed pain medication are in serious danger of becoming addicts. Chronic/intractable patients who take pain medication are no more likely to become addicted than the general public, despite the media mudslinging. Their biased attacks are damaging to pain patients–threatening access to vital medication throughout the country. I’m not sure why the media has resorted to such harmful tactics, but we’re not actually that newsworthy. Though fact-based stories on addiction stats can be boring, we’re just like the rest of the country. According to government statistics (SAMHSA), the addiction rates are well under 5%.

Living with Pain

Regardless of the public’s often negative viewpoint, people with diseaseses like Central Pain Syndrome, Adhesive Arachnoiditis or Trigeminal Neuralgia often depend on prescription medication. It’s an important part of many patients’ pain care protocol. Not because they want to use this medication; it’s not because they enjoy the ongoing doubt by family and friends, the hesitation of physicians, the media attacks that end up riling up the public into near-frenzy. As patients, each of us takes whatever treatment works for us, because we want some semblance of a life back. Period.

We never asked for any of this. Personally I’m shy by nature. I don’t want to be the center of attention for any reason. But to question my character, to believe I am capable of being a bad person, scheming and creating this whole “illness” — that makes me sick to my stomach.

I’m not an addict. I’m not enjoying one minute of any of this. I didn’t enjoy the years of mistrust that kept me from getting care. I didn’t enjoy the fact that I was a rag doll being tossed around the Worker’s Comp System at will. And, I certainly don’t enjoy the fact that I will live with intractable pain for the rest of my life because they didn’t treat my illness effectively when I begged them over and over for their help. Even more, I don’t enjoy all the worry this situation creates.

pain medication

I don’t think most people realize that we who life under the microscope merely because we are sick absolutely hate it. I hate that I have to worry every minute about my doctor being there for me from month to month. What if he retired? Or was investigated and bankrupted by his defense? What if he just couldn’t take the pressure any more and walked away? Worry about the pharmacy having my medication, or like my doc, being investigated and going broke. Then, there’s worrying I will get a knock on my door from the friendly neighborhood DEA. Merely being a patient has gotten many people arrested, and even imprisoned–and I know I wouldn’t survive that! And then there’s the very real concern that federal or state laws will regulate me right into an early grave.

If you think I’m a bad example and no one else worries like this, think again. I’ve talked to many others and they are all scared. As if the stress is good for us! If your illness was constantly in the media spotlight, how would you feel? What if there was also increasingly tough legislation that you knew was endangering people’s lives all over the country? It’s a scary time to be a pain patient.

I even dislike the process and all the nonsense that goes with it. Unlike other illnesses, we cannot just see the doctor every 3-4 months or longer. Nope. Even though I like my doctor, I despise being forced to check in like clockwork, monthly. Same with the meds. We cannot get 90 days worth of medication at a time with a bunch of refills–despite the fact that this is a lifelong illness. Oh no, we’re at the pharmacy every 30 days. And what’s even more annoying to me… refills are not allowed. And, if you happen to see your doc a little early? That makes things even more fun. When I go to the pharmacy, the prescription has to be put on hold and filled later. Why? It hasn’t been long enough since I last filled it. What’s even more upsetting is that I am stuck in California. I cannot move–even if living elsewhere may be cheaper, because I’m terrified I couldn’t find a decent doctor elsewhere. (I’m blessed to have a very good one here.)

Reading all of the above should present a pretty clear picture of all the reasons why none of us enjoy being reliant on opioid medication for our treatment. Why on earth would any of us want to live this way? It’s not a choice–that’s what people need to understand. Not at all.

And, here’s the real shocker. Like most people who are in severe, constant pain, I have never gotten a “high” feeling from my medication. Ever. I think that would surprise most people. But, here’s the thing… We need the medication just as if we had anemia and needed to take iron. Or had diabetes and needed insulin. It’s the correct treatment for a serious illness. I’ve talked to many other people who’ve had the same experience. We don’t see why people abuse pain medication. It doesn’t make sense to us, because we’ve never seen that side of these medications. To us, they are vital treatments for a gravely serious disease. To us, pain medication is a lifesaving treatment. Period.

I wouldn’t wish my pain on anyone. Ever. But, I really do wish everyone would have the decency to believe us when we say we’re in serious pain and persist with our pleas for help over so many years. All we want is some mercy. Some understanding. The willingness to see us for who we are without judging. To believe us. The fact that we don’t have that from the world around us is what really surprises me.

People with chronic and intractable pain are just like anyone with a life-threatening health problem. We very ill people who need ongoing access to a truly vital treatment. Is that really so difficult to understand?

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

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