In 2019, the Centers for Disease Control and Prevention (CDC) issued warnings to policymakers that a range of policies aimed at addressing the opioid crisis through limiting prescriptions—especially policies based on misinterpretations of its 2016 prescribing guideline—are increasing barriers and causing harm to people living with pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; in increasing numbers, the same group of people is being denied medical care altogether. The Food and Drug Administration concurrently issued an alert about the dangers of abrupt opioid cessation.
Despite these safety alerts and our success in 2019 as a disability community in preventing federal policies that create inflexible limits from passing into law, several soon-to-be-introduced bills double down on stringent, one-size-fits-all limits.
Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. The harm caused by these policies, which may range from increased pain, to loss of function, to suicide or resorting to illegal substances, has now been documented in numerous studies.
Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership, leaders of key committees working on these issues, and sponsors of key bills. We are writing to ask Congress not to contravene the warnings of our public health agencies and to await the outcome of ongoing efforts by the CDC and the FDA (in consultation with the National Academy of Medicine) in updating prescribing guidelines for acute and chronic pain.
As organizations that advocate for the rights of people with disabilities, we hope you will add your organization’s name as a signatory to this letter. Nearly 100 organizations signed a similar letter in 2019, which greatly enhanced our advocacy efforts. You can add your organization at the link above or by emailing [email protected]. The deadline to sign on is Tuesday, March 9, 2021.
Additional Information
The most problematic policies are based on misapplication of the CDC’s Guideline for Prescribing Opioids for Chronic Pain. These include:
- Strict limits on opioid prescribing for acute pain, often of 3-7 days
- Applying dosage guidance designed for opioid naïve individuals to people currently taking opioids and the physicians who care for them
- Mandatory or abrupt tapering off opioids and patient abandonment
- Overreach to unintended populations
Additional information on each of these can be found in the letter.
The CDC and FDA recently issued several clarifications as a result of the harms being caused to people with chronic pain:
- A clarification was published in the New England Journal of Medicine (NEJM) by the CDC Guideline authors, along with a strong press release, addressing the widespread misapplication of the Guideline and the resulting harms.
- The CDC Director issued a letter (PDF) in response to a letter by 300 doctors and former drug czars making it clear that the CDC does not support abrupt or mandatory tapers or discontinuations.
- The CDC wrote a letter to oncologists and hematologists (PDF) addressing previously expressed concerns with overreach of the Guideline. The letter also states the Guideline was never intended to deny access to opioids for anyone with chronic pain.
- The FDA issued a warning against abrupt tapers and sudden discontinuations and announced a label change in response to reports of serious harm.
- HHS came out with safer practice guidelines (PDF) for those who wish to reduce opioids.
While we have significantly decreased access to opioids, there has not been a responsive increase in access to or coverage of non-opioid treatments. One of the bills addressed in the letter – the NOPAIN Act – which we support, attempts to expand such treatment. Nevertheless, it is insufficient, as people with pain need access to the full spectrum of available modalities of pain treatment.
As organizations advocating for the rights of people with disabilities, we hope you will join these efforts to call on Congress to focus on the needs of people with chronic pain.
Further Resources
- Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations, Final Report (PDF)
- Human Rights Watch’s 2018 report “Not Allowed to Be Compassionate: Chronic Pain, The Overdose Crisis and Unintended Harms in the US. A summary of this report is also available.
- International Stakeholder Community of Pain Experts and Leaders Call for Urgent Action on Forced Opioid Tapering
- Coverage of recent CDC/FDA clarifications: No Shortcuts to Prescribing Opioids For Chronic Pain. Millions of Americans Need Nuanced Care and CDC Advises Against Misapplying Opioid Guideline
I’m a severe case intractable pain patient . Without my meds I’d be living in horrific pain induced tears, nausea and vomiting! Pain is a very serious disease that requires adequate pain control. It’s unfathomable and completely inconceivable to Not treat pain. We, the CPC Deserve respect, compassion and our human right to proper healthcare. Disenfranchising us from our Dr care is extremely dangerous & it’s costing lives. When we don’t have pain care there is no health or care. Its time we stop discriminating patients & Drs & give them back the respect, honor & stability they deserve! Opioid therapies not only sustain lives they help inflammation and pain. Quality of life is enormous to those who suffer this much detrimental pain They also help with healing and protect the sick from getting sicker. It is beyond time our voices be heard! It’s time we respect science and our human Rights to adequate pain control /care. It’s time our doctors have control over the care of their patients, nobody without a Dr degree should be able to dictate or evaluate the patients care.
I’m a CHRONIC PAIN PATIENT
WHO is SUFFERING AND BEING TORTURED to DEATH BECAUSE my PAIN MEDICATIONS were reduced .
I can’t take this HORRIFIC PAIN anymore. CHRONIC PAIN is the WORST PAIN IMAGINABLE EVERYDAY FOR years AND years. I would of never BELIEVED that you COULD be in this much HORRIFIC PAIN UNTIL it HAPPENED to me. It’s like the PAIN SIGNALS ARE stuck WIDE OPEN AND don’t shut off like they should. If you or your FAMILY MEMBERS ENDED up with CHRONIC PAIN you will SUFFER to UNTIL your DEATH. These PAIN MEDICATIONS ARE MIRACLES FOR US to RELIEVE terrible PAIN AND SUFFERING. We have used these PAIN MEDICATIONS FOR DECADES AND they made it POSSIBLE to take CARE of OURSELVES AND FAMILIES or work .
I can’t even take CARE of MYSELF AND I live alone I lost my husband in a bad accident in 2016.
2003 I was in a bad accident. I have a brain injury, three bleeds in my brain fractured neck back broken collarbone AND paralyzed on my left side with hard work AND PAIN MEDICATION that MADE it POSSIBLE to take CARE of MYSELF AND FAMILY AND I even RODE my HORSE AGAIN.THIS HELPED me MENTALLY AND PHYSICALLY UNTIL. 2007 terrible PAIN stimulator surgery that caused me MORE and new PAIN along the panic attacks. Then I was taken down on my PAIN MEDICATIONS.
I never RODE my HORSE AGAIN or walked my dog. PLEASE HELP US .
This is the WORST CRIME in HISTORY AGAINST CHRONIC PAIN PATIENTS AND VETERANS who ARE SUFFERING and COMMITTING SUICIDE BECAUSE WE CAN’T ESCAPE the HORRIFIC PAIN.
We take our MEDICATIONS as PRESCRIBED. We are not DRUG ADDICTS who ABUSE ILLEGAL DRUGS. I’ve tried everything to get out of PAIN but NOTHING worked but PAIN MEDICATIONS that gave me pain relief. I’m DENIED the PROPER dose of PAIN MEDICATION to get me out of this HORRIFIC UNBEARABLE PAIN. PLEASE HELP me and all the CHRONIC PAIN PATIENTS AND VETERANS WHO ARE SUFFERING AND BEING TORTURED to DEATH
Someday you or a family member may need major surgery. any of you may have an accident or develop an illness which causes excruciating pain. And because of you going along with this ridiculousness you or your family will suffer. Do you really want to wait until it’s too late to do anything about that? I will tell you that no matter what you do the drug addicts will keep dying. You could stop every single pharmaceutical company from producing opiates. The drug addicts will have no qualms in going to the street and more will die from illicit fentanyl. I know because that’s how my son died after a 20-year addiction to opiates. And he didn’t become addicted to pain pills. He started doing heroin in high school with the older kids he was hanging out with. And I’m not blaming the older kids, he had Free Will and made the wrong choice. When he died of fentanyl he didn’t know he was taking fentanyl as most addicts who die from that don’t know what they’re taking. You will save none of the real addicts by stopping the distribution of prescription opiates. I’ve seen my son and his friends and they will just turn to street drugs and more will die. I’ve listened to chronic pain patience. As far as they’re concerned you will have more deaths. Many will commit suicide. Many already have. The others will turn to the streets out of desperation to relieve their pain.
The only data and statistics are on opioid addiction and overdoses. Millions of chronic pain patients have taken prescribed opioids without any problems. Why isn’t that data being used? I have suffered 24/7 pain since being force tapered 2/3 of my pain medication. I was on the same dosage for 8 years. What medical reason does the government have the right to tell my doctor that patients need to be tapered to a certain mme or you might get your license taken away. Something is wrong in America when the government and medical industry can’t separate chronic pain from addiction. It’s all poly substance use causing overdoses not prescribed opioids that are medically prescribed. Something has to be done!!!
Even hospice patients are being denied desperately needed pain medications. Doctor are terrified of the DEA and the DEA is now in charge of our medical community. People on severe accidents, with long term post operative pain are not getting proper pain control. And over doses are up due to street drugs. The prescribing of opioids has never been lower. Please get this government over reach out of the sacred doctor/patient relationship.
i am a chronic pain patients and this ridiculousness has stolen the last few years from me !!! I have arachnoiditis and am in serious pain daily !!!! My meds have been cut in half and now i am having to make choices about things i should not be having to consider!!! A lot of people think this will never happen to them !! Think Again cause here we are !!! Literally in a fight for our lives !!!!
I am a intractable chronic pain patient.
There is a hidden population that most people have no idea exists. We are 40,000,000 strong we are the patients who deal with rare / painful/permanent /incurable/ intractable pain who are treated as the dredge of society at no fault of our own. 8,000,000-10,000,000 patients have been forced tapered off their long term opiate pain meds, forced into withdrawals at no fault of their own! We are told as a society to tell our doctors when we are in pain, but when we do we are degraded/chastised and treat as if we are drug seekers! CORRECT USE DOES NOT EQUAL ABUSE!
We as intractable pain patients implore Representative Benjamin Fredrick to stop targeting our doctors! High impact intractable chronic pain is barbaric , caustic, relentless agony that wears on the mind body and soul and 99% of the time this type of pain is invisible and we have to VALIDATE /PROVE HOW SICK WE ARE! A few descriptive words I use to describe my pain level is lacerating/piercing/ripping/searing/crushing and that I feel these symptoms from the time my eyes open until my eyes close for the day. There is never a reprieve or even a lessened pain day.
Pain is relentless Pain is cruel it does not discriminate it can happen to you! everyone is one situation away from needing pain meds! There is NOT an Opiate Crisis there is an ILLICIT Fentyal and heroin problem! Drug addicts use drugs to escape life, chronic pain patients use drugs to have quality of life and some semblance of life! Chronic pain will humble / humiliate the most prideful person! Compassion and empathy is HUGE and if you think this life can’t happen to you just remember your job will be listed by 5pm the same day you die!
I am a chronic pain patient for 10 plus years. My quality of life has deteriorated due lack of pain control. The last 3 years , I have been house bound and mostly bed bound. I have fibromyalgia, ME/CFS, peripheral neuropathy, and arthritis my back. I am 49 years old. I’ve had multiple steroid injections in my back to see if the would help the pain(they did not.)My pain management under treats my pain, to the point that I became suicidal due to intractable pain from a steroid injection. Finally, an MRI was done and I was able to have surgery. However, the post operative pain control has been difficult to the concerns of the doctors.Please end the suffering of millions chronic pain patients that just want to be able to live their lives. The true epidemics is the steet drugs mixed with fentanyl and are coming in from out of country.