Not Dead Yet: The Opioid Crisis the News Isn’t Talking About

Response to RFI – Opioid Public Health Emergency[1] 

February 20, 2018

We are members of Not Dead Yet, a national grassroots disability rights organization, and some of us are living with chronic pain ourselves. Based on our knowledge of the disability community through personal experience and through our work, we have not seen disabled people with chronic pain experiencing opioid use disorder. What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication[2]  previously available as part of comprehensive strategies and approaches to address chronic pain. They are experiencing an increase in chronic pain and other symptoms associated with that pain. Disabled people and others with chronic pain are rarely the ones who are abusing opioids,[3] but they are the ones who are having to deal with chronic pain symptoms without access to medications that made this pain more tolerable.

That is not to say that some disabled people will not have opioid use disorder. However, from our observation, chronic pain is not a causal factor[4] in who has abused opioids. Instead, opioids are a mitigating factor in how independent those with chronic pain are able to be. Having to deal with chronic pain with no relief, when opioid medication prevented such pain, can greatly affect the quality of life[5] disabled people with chronic pain have. It can affect their ability to perform activities of daily living. It can affect their ability to sleep. It can affect their mood. It can affect their productivity. Those with chronic pain that is untreated or mistreated are more likely to be depressed,[6] and depression itself can also be linked[7] to physical pain. Being depressed and in pain can also make disabled people more susceptible to suicidal ideation,[8] especially when there is seemingly no relief to the long-term pain they experience.

For some disabled people, opioids are the only medication or treatment that can help their pain. Now, those who have chronic pain are treated with suspicion,[9] as though they are abusing opioids, especially by medical personnel at doctors’ offices and hospitals when they seek out this medication. Doctors are increasingly afraid and unwilling[10] to prescribe opioids, so instead of continuing effective treatment for those who have seen great benefits from using these medications, too often doctors are essentially abandoning those who truly need access to opioids.

Opioid abuse is a problem, but it is not a problem for the overwhelming majority[11] of the disability community or others with chronic pain. It’s a problem for those who have already been abusing these medications. Those are typically not people who need these medications to handle long-term chronic pain.

Yet, as sometimes misguided approaches to addressing the opioid crisis are hastily undertaken across the country, the very individuals, who benefit greatly in terms of health and productivity from continued opioid use as part of a comprehensive pain management strategy, are the people who face the most scrutiny and harm by not having access to medically necessary and appropriate medication.

HHS/ACL must recognize the harmful effects of a misguided crackdown on the legitimate use of opioids for chronic pain, educate state governments and providers about research on this issue, and discourage federal, state and local programs that do more harm than good in addressing the opioid crisis.

[1] https://www.acl.gov/sites/default/files/about-acl/2018-01/Final_RFI_Opioid_Use_Disorder_PwD_Jan2018.pdf
[2] Andrew Rosenblum, et al., Opioids and the Treatment of Chronic Pain: Controversies, Current Status, and Future Directions (2008)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711509/
[3] Maia Szalavitz, Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause (Scientific American, May 10, 2016)https://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/
[4] Michael A, Yokell, et al., Presentation of Prescription and Nonprescription Opioid Overdoses to US Emergency Departments (Jama Intern Med, Dec 2014)https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1918924
[5] McCarberg BH, et al., The impact of pain on quality of life and the unmet needs of pain management: results from pain sufferers and physicians participating in an Internet survey (Am J Ther 2008) https://www.ncbi.nlm.nih.gov/pubmed/18645331
[6] Bair MJ, et al., Depression and pain comorbidity: a literature review, (Arch Intern Med, Nov 2003) https://www.ncbi.nlm.nih.gov/pubmed/14609780
[7] Madhukar H. Trivedi, M.D., The Link Between Depression and Physical Symptoms (Prim Care Companion J Clin Psychiatry, 2004)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486942/
[8] Beverly Kleiber, et al., Depression and Pain (Psychiatry, May 2005) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000181/
[9] Chronic pain patients say opioid crackdown is hurting them (Chicago Tribune, June 5, 2017) http://www.chicagotribune.com/lifestyles/health/ct-opioid-patients-backlash-met-20170603-story.html
[10] Kelly K. Daneen, et al., Between a Rock and a Hard Place: Can Physicians Prescribe Opioids to Treat Pain Adequately While Avoiding Legal Sanction? (Am J Law Med 2016)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494184/

[11] Nobel M, et al., Opioids for long-term treatment of noncancer pain (Cochrane, Jan 2010) http://www.cochrane.org/CD006605/SYMPT_opioids-long-term-treatment-noncancer-pain