Tag Archives: opioids

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.

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The Dark Side of Pain: Serious Challenges We ALL Face

23 Aug

“Advocating for Another” Carnival 2012 – Day 3

by Heather Grace IPJ Staff Writer

Life with chronic or intractable pain can be extremely challenging. There are so many variables that are simply not a factor for people with other illnesses. Pain is a disease that is widely misunderstood, and this breeds all kinds of problems. Here are the top 3 concerns we all face:

1. Effective Treatment

Diseases like diabetes or high blood pressure have simple treatment protocols. Nearly any doctor can treat a patient with elevated blood pressure or elevated blood sugar. Sadly, pain is a different story. Though most patients end up in front of a physician because they are experiencing some form of discomfort, treating pain has become a crisis worldwide.

The Journal of the American Geriatric Society (October, 2005) found that doctors generally receive only a few short hours of training in how to treat and cure pain. They were especially uninformed on the treatment of musculoskeletal, neuropathic and low back pain. Doctors also don’t receive training in multidisciplinary and alternative treatments via medical school.

Trust Me The issue? Doctors are expected to learn more about pain and examining physical complaints while in residency, as well as in the early days of practice. This creates a huge gap in knowledge. Lack of knowledge makes it hard for doctors to know how to treat patients. Often, they just do what their mentors show them to do, and nothing more. If that mentor doesn’t feel comfortable treating pain, then neither will the new physician.

Pain sufferers acknowledge that pain care is in crisis. One survey of over 1,000 people by Purdue Pharma was quite revealing: 2/3 of pain patients said that their over-the-counter medication wasn’t working, while over 50% said their prescription medication wasn’t working. On average, people with pain had been to three doctors and taken four types of medication without success.

Some doctors are ill equipped to treat pain, while others are simply afraid. Doctors face scrutiny from medical boards, the Drug Enforcement Agency (DEA) and even insurers. Whatever the reason, I know many people who have spent years with untreated or undertreated pain. Many more are currently suffering. Writhing in pain, many pain sufferers are just trying to survive day to day, and sometimes hour to hour. Pain treatment is in crisis, and it is only getting worse each year.

2. Media Backlash

Media Attacks The media is a huge barrier to effective pain care. We’ve all seen the headlines. It seems there are overdose deaths all over the country everyday. The truth is, the number of deaths each year isn’t substantially increasing. About 15,000 people per year in the last several years have died with opioid pain medication in their system. Given the fact that chronic pain impacts upwards of 100 million people in the U.S. (IOM, June 2011), less than 2% of the country’s chronic pain patients die each year with opioid pain medication in their system. (See more on the so-called opioid “epidemic” at http://updates.pain-topics.org/2011/11/are-opioid-pain-reliever-deaths.html.)

The pervasive negative messages impact pain care on so many fronts. It doesn’t matter if prescription pain medication saves lives or not. As soon as an effective treatment is classified in news reports as addictive, dangerous and/or deadly, access to treatment becomes an even greater problem–even if the stories aren’t true. Media reports are believed, especially when the same information is repeated all over the place. Once a damaging story hits “the wire,” it spreads like wildfire. The biggest problem? The public believes news reports, never questioning their validity.

OTC medication Even if a pain sufferer hasn’t seen all the headlines, family members are sure to voice their concerns. Chronic pain patients will then feel great shame about their need to take pain medication. Eventually they stop talking about their pain, and especially their pain treatment. Worse yet, the news reports make many believe that taking prescription pain medication is too risky. Patients often use alternatives like acetaminophen, ibuprofen and NSAIDS in large quantities. Even though this can damage internal organs, as pain increases, patients take larger and larger doses of these seemingly harmless over-the-counter medications.

The problem is compounded when the constant media bombardment intimidates physicians. Doctors become hesitant to prescribe pain medication, afraid of a backlash from their medical board or the DEA. Doctors also fear lawsuits from concerned family members, especially when a pain patient dies–even if the death is unrelated to the treatment.

Worst of all, the accurate stories in the media are often buried. There is so little information that doesn’t fall victim to sensational pain medication stereotypes. For stories you can count on, I recommend http://www.pain-topics.org and http://www.ppmjournal.com.

3. Support System Fades Away

We all have a really rough time dealing with the disease of pain. Not just because pain takes a lot out of us, both physically and emotionally. Sadly, that’s not the worst part. There is an awful, unspoken trauma people with pain experience when loved ones–the people that we believed would be there for us 100% no matter what–fade from the picture. They disappear when pain sufferers need their support most. If you’ve walked down the dark and uncertain path that is chronic pain, you know what I am talking about… People leave.

No matter how wonderful our friends and family are, they may not be by our side through the worst of our pain. Seriously ill people are often deserted by the same loved ones who said they’d always be by our side. It can be jarring to lose all sense of normalcy to pain, only to lose even more… when our support system becomes rocky.

We’ve all felt hurt and confused when our supposedly closest allies are not willing to be there through the rough spots. You realize that when people ask “how are you doing?” they don’t want the gory details. Instead of being a shoulder to cry on, most people want/expect to hear, “fine” in return. The losses really add up as we find out that so many people we thought were close friends were really just casual acquaintances.

Everyone I know who has chronic or intractable pain has also lost friends and family because they misunderstand pain. That’s the most devastating part. They love and trust you one moment, and once the diagnosis is shared, all faith in you is dashed. Instead of telling you their concerns, doubt swirls within your loved ones. They’re worried you’re a faker, or an attention-seeker, or maybe just lazy. Or worse. Sometimes they take media reports to heart and believe you’re crazy, or an addict. Or both. Losing people this way us a deep and painful wound.

Even people who believe you may leave. Some have a hard time seeing you suffer, in pain without any answers for years of your life. It hurts them, and it also makes them uncomfortable to be so powerless–unable to help. Sometimes, they fade away because it is easier than to be feel sad and helpless all the time.

Navigating the horrors of pain can be devastating! The challenges of life with chronic/intractable pain are many. It is not by any means easy to live with such a serious yet misunderstood illness. Being tough is a requirement–pain takes over every bit of who you once were, and forces you to begin again. If you’re lucky, you see some bright spots among these challenges. You fight bravely through the worst of it, and learn countless valuable life lessons. In the end you realize there is only one option in taking on such a challenge: if you can’t beat the pain–you learn to live with it, on good days and bad.

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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