On Sunday, I participated in my second twitter chat with disability rights advocates, this time with #CripTheVote, on the topic of chronic pain and opioids. Recent policy in response to the problem of drug overdoes has put pressure on doctors to restrict or eliminate treatment with opioids for people in pain. Many pain patients are being forced to taper off of opioid analgesics that helped enable them to function, and this practice has lead to several notable suicides. I appreciated being able to answer questions on the current environment. My responses can be found below.
Background: Opioids are substances that act on opioid receptors to produce morphine-like effects. Medically they are primarily used for pain relief, including anesthesia. https://www.drugabuse.gov/drugs-abuse/opioids Note: During this chat we will focus on the usage of prescription opioids for pain relief, not for recreational purposes.
Thank you #CripTheVote for hosting this important #disabilityrights conversation about #chronicpain and #opioids.
Q1 Happy New Year! Community check-in. How are you doing and what are your expectations/hopes related to disability issues & politics this year? #CripTheVote
A1 #CripTheVote As someone who worked enforcing the ADA at DOJ for 20 years, I am disturbed by Sessions rescinding ADA guidance, not because it changes longstanding agency interpretations but because of what it signals about DOJ ADA enforcement. #disabilityrights
A1 #CripTheVote” There are so many concerns, but most involve access to healthcare, the healthcare markets after the tax deal, and new threats to Medicaid. #handsoffmyhealthcare
Q2 For those who are comfortable sharing, what are the most misunderstood aspects of living with chronic pain? What are your thoughts on the media coverage of opioids and chronic pain?
A2 #CripTheVote” Because everyone experiences pain, I think very few understand what a life in #intractable or #severe #chronicpain entails and why access to #treatment is so essential.
A2 #CripTheVote” Having severe, #intractablepain that shapes every aspect of life, that can prevent sleep for months at a time, is extremely challenging.
A2 #CripTheVote” Pain’s invisibility can engender misunderstanding, as when others think a person in #pain who with treatment may be able to perform functions of daily life, seems “well.”
A2 #CripTheVote Culture plays a key role. Anesthesia was discovered 100 years before it was fully in use because of a belief rooted in religion/culture that we should feel #pain, that it helps us build moral fortitude and experience its opposite, pleasure.
A2 #CripTheVote” Cultural perceptions of people in #pain as malingering, whining, or drug-seeking are sometimes perpetuated in media coverage.
A2 #CripTheVote But, honestly, my biggest problem with media coverage is the absence of coverage, the invisibility and silence around #intractable and #chronicpain, especially when it comes to #treatment with #opioids.
Q3 People take opioids for all sorts of reasons. Regarding pain relief, please share your experiences with opioids. What is the difference between chronic pain and other types of pain? What myths, stigmas, criminalization, and surveillance are associated with opioid usage? #CripTheVote
A3 #CripTheVote As noted, you can see my story of how a surgery left me unable to sit, stand, or walk and in severe #pain for more than 20-years, and also how I was helped by treatment with #opioids, here https://www.youtube.com/watch?v=u4vHSLeTe-s.
A3 #CripTheVote I exhausted all other treatment alternatives before taking #opioids. But #opioids in combination with integrative treatment allowed me to continue to work as a Federal civil rights prosecutor even when I couldn’t sit, stand or walk.
A3 #CripTheVote Many people think #opioids make you sedated or dopy but for me, by causing the #pain to remit, they created space in my mind that enabled me to work.
A3 #CripTheVote I used #opioids for a long time but never became addicted. I also never developed tolerance requiring higher doses for the same pain relief. I did need to wean off of #opioids slowly once my pain improved and I no longer required them.
A3 #CripTheVote Going off of #opioids was an anticlimax.
A3 #CripTheVote For most people, pain is a symptom. But when pain lasts 3-6 months or longer, because of centralization, inflammatory and immune responses and biochemical changes, #chronicpain can become a disease in its own right.
A3 #CripTheVote Media coverage often falsely correlates pain patients with opioid abuse, which creates stigma. Most studies show that 70% of people who misuse opioids do not have a valid prescription for them. They receive them from friends or family or buy on the street.
A3 #CripTheVote When people in pain who are properly prescribed opioids are screened for addictive potential and trauma before treatment begins and are monitored with follow-through care, the risk of addiction goes down dramatically.
A3 #CripTheVote #Criminalization breeds #stigma and misunderstanding. We still lose significantly more lives to the socially-acceptable drugs of #alcohol and #cigarettes than we do to drug overdose or opioid-related misuse, drugs without corollary health benefits.
A3 #CripTheVote One area of confusion is that even many doctors do not understand the difference between #addiction, #dependence and tolerance.
A3 #CripTheVote The critical question is whether #opioids are restorative, of functionality, or whether they have destructive consequences, as in the case of addiciton.
A3. #CripTheVote Addiction involves the compulsive and continued use of a medication or substance despite life-endangering and destructive consequences.
A3. #CripTheVote Even with proper use in #treatment, #opioids cause physical dependence, meaning that one has to taper to stop using them. This happens with other classes of drugs, such as some blood pressure medication and anti-depressants.
A3. #CripTheVote Sometimes with physical dependence, tolerance also occurs, requiring higher dosages in the case of #opioids for the same #pain-relieving effect.
A3. #CripTheVote Any credible addiction expert will tell you that the psychological aspect of addiction – a learned message of substance use generating rewards – is a greater challenge in treating and overcoming addiction than physical dependency.
Comment: Health disparities based on race and gender can complicate treatment.
A3. #CripTheVote #Healthcare #disparities experienced by women and people of color in medical care generally only worsen the consequences of these policies for people in #pain.
A3. #CripTheVote Historically, women’s pain is often under-addressed by physicians, see The Girl Who Cried Pain, https://papers.ssrn.com/sol3/papers.cfm?abstract_id=383803.
A3. #CripTheVote Where men in pain are historically given #opioids, and women are often instead given #medication like benzo’s for #emotional conditions, an extension of ideas about women and #hysteria.
A3. #CripTheVote Recent studies show that women may experience pain differently than men due to hormonal differences. @forgrace does great work advocating for the unique difficulties of women in pain.
A3. #CripTheVote The correlation of pain, #opioids, and social policy with racial disparity is even more devastating. In addition to the disproportionate impact the “War on Drugs” had on communities of color (see A 7), people of color are undertreated for pain.
A3. #CripTheVote Keith Wailoo, in The Politics of Pain, explains that, when race correlates with lower income the disparities only rise – with reduced access pain management services.
A3. #CripTheVote Keith Wailoo explains that pharmacies in lower-income neighborhoods of color often fail to stock or inadequately stock #opioids because of fears of theft and break-in.
Q4 How will these restrictions affect patients, sick people, chronically ill people & disabled people? What else have you observed in your local communities and in other countries? #CripTheVote
A4. #CripTheVote. CVS/Caremark lead the charge to limit prescriptions to 7 days and also to limit prescriptions over a certain dosage. Several states are adopting similar limitations.
A4. #CripTheVote. While a limitation might in theory make sense for acute pain (so that we don’t have extra pills left over in medicine cabinets), it places an impossible burden on people with disabilities who live with #chronic or #intractable #pain.
A4. #CripTheVote. As a result of CDC guidance (that was intended to address the under-education of primary care physicians about pain) being enacted into law in many states and pharmacy limits, insurance companies are also denying coverage.
A4. #CripTheVote. There is currently an FDA notice in the Federal Register to cut all opioid analgesics over a certain dosage entirely from the drug supply.
A4. #CripTheVote Similar draconian actions by the Veterans Administration have devastated the lives of many #veterans in #pain.
A4. #CripTheVote All of these measures are damaging people in serious pain, robbing them of functioning lives, increasing their degree of #disability, and, resulting in numerous suicides tied specifically to lack of #pain #medication.
Q5 What are the consequences of stricter limits on prescription opioids and doctors shifting toward other forms of pain relief? #CripTheVote
A.5. #CripTheVote The perverse result of these policies and stepped up DEA prosecution of doctors is that people in pain are being force #tapered off of their #opioid #medication and dismissed from physician practices.
A.5. #CripTheVote There has been a push by some healthcare companies, including a notable pilot at Kaiser, to leverage the #opioid crisis to gain coverage for integrative treatments that are necessary for appropriate pain relief.
A.5. #CripTheVote While I applaud this effort to cover psychotherapy, acupuncture, massage and many other modalities for pain, some people in pain need access to these treatments and appropriate pain #medication. It shouldn’t be either/or.
Q6 There’s also the concept of ‘pain acceptance.’ Doctors asking patients to live with a certain level of pain for the rest of their lives. What do you think of this idea? Is it acceptable to you? For more: https://www.vox.com/2017/11/13/16387320/pain-acceptance-opioid-epidemic-chronic-pain-treatment
A.6. #CripTheVote I think most people in serious #pain accept that they will live in a certain amount of pain – that #treatment will not entirely remove pain from their lives – and most #self-manage and take #responsibility as a partner in their care.
A.6. #CripTheVote I also understand that continual pain leads to an upregulated nervous system which can, in turn, increase the pain. So, things like CBT, biofeedback, and meditation can really help. So-called pain #catastrophizing worsens suffering.
A.6. #CripTheVote Jane Ballantyne is part of PROP, the group leading the charge to seriously curtail treatment with opioids for people in pain. As a result, to many in pain, “pain acceptance” becomes more controversial. Some of the language used in discussion of this concept is also dicey.
A.6. #CripTheVote I was still in considerable pain despite my pain treatment.
The current Administration declared the opioid epidemic a public health emergency in the fall of 2017. https://www.nytimes.com/2017/10/26/us/politics/trump-opioid-crisis.html #CripTheVote
Q7 Clearly, there is a racial and class disparity (among others) in the way the US govt treats substance abuse. What are the main differences you’ve observed with the current ‘war’ against opioids and the ‘war on drugs’ in the 1980s? What differences have you noticed in the media coverage? #CripTheVote
A 7 #CripTheVote Our ideas about drugs and who gets to use them are tied to social ideas about race. @maiasz Unbroken Brain
A7 #CripTheVote
Fear of Chinese immigrants who came to help build the railroad affected laws regarding opium, and during Jim Crow fears about the prowess and power that purported to embolden black men in the case of cocaine, shaped our drug laws. @maiasz Unbroken Brain
A7 #CripTheVote This stigmatizing and fear-based history is part of the reason for our criminalization and “war on drugs” approach to #addiction.
A7 #CripTheVote The “war on drugs” from the 1970s forward devastated people and communities of color. Michelle Alexander’s @thenewjimcrow and 13th by @ava well document this history.
A7 #CripTheVote Studies show that whites and blacks use drugs at similar rates and the rate of selling drugs is higher among whites but prosecution, conviction and prison time for drug use and sales are radically disproportionate against people of color. @maiasz Unbroken Brain
A7 #CripTheVote Today’s political and media coverage talks of treatment vs. prosecution of current opioid users who are predominately white.
A7 #CripTheVote But we are still taking a “war on drugs” approach to prescription opioids, with stepped up prosecution of pain doctors and regulatory limits to allowed opioid dosages.
A7 #CripTheVote The criminalization approach is not effective. The Global Commission on Drug Policy, which represents people of different political viewpoints, found that the original war on drugs did nothing to curtail supply or use.
A7 #CripTheVote From prohibition forward, criminalization of substance misuse often endangers lives rather than protecting them.
A7 #CripTheVote Our current war on prescribers is intensifying even though studies show that prescribing has dropped every year since 2012, and opioid-related deaths continue to rise. The bigger problem today is black tar heroin and illegal fentanyl.
A7 #CripTheVote As is often the case, the law and policy are behind the times and are failing to address what is happening today. A balanced approach that considers the nuance and complexity of all aspects of #opioids is needed.
A7 #CripTheVote We are also failing to #treat #addiction and people who have opioid use disorder who are also people with disabilities. Adding naloxone to clinics to prevent overdose is one last-ditch effort but many more are needed.
A7 #CripTheVote Most #addiction specialists will tell you that addiction rarely results from a single exposure to a drug. Addiction often begins in adolescence and many cases involve trauma or co-existence with another disability.
A7 #CripTheVote 48 million surgeries are performed annually in the US, and opioids are a primary pain medicine used post surgically. 50 million Americans have severe or persistent pain. We’d have more than 2.5 million Americans misusing #opioids if exposure were the main issue.
Q8 What are some policy changes you would like to see that would support people who need treatment for addiction and protects access to prescription opioids to those who need it?
A8 #CripTheVote The main thing we need is thoughtful #PublicPolicy that is neither hysteria driven nor driven by a single agenda. #Opioids are a complicated issue and need to be addressed with nuance.
A8 #CripTheVote We need to consider both sides of opioids – their utility to treat pain and their susceptibility to abuse. And we need to tailor policy to current conditions and to meeting the needs of people in pain and people with opioid use disorder.
A8 #CripTheVote 7-Day limitations by pharmacies and states are designed to address acute pain – to keep left over medicine out of the hands of those who might misuse them. We need exceptions for chronic pain that are workable, and don’t lend themselves to insurance denials or hoops.
A8 #CripTheVote We need a public health campaign about the dangers of sharing prescription opioids, and about proper storage and disposal options.
A8 #CripTheVote There is progress on the disposal front. Just Wednesday, Walmart announced that it is offering a product that turns unused prescription medications into a harmless, biodegradable gel for disposal. https://www.reuters.com/article/us-walmart-opioids/wal-mart-launches-program-to-safely-dispose-of-unused-opioids-idUSKBN1F60FF
A8 #CripTheVote We need curriculum changes in medical schools to educate doctors who don’t go onto specialize in pain or addiction about both. This is especially important for primary care and ER docs.
A8 #CripTheVote 50 million Americans are in severe or persistent pain, or 1 in 6, more than are affected by heart disease, diabetes, cancer or stroke and costs (by conservative estimates) approximately $ 600 billion, annually.
A8 #CripTheVote Yet less than 1% of the National Institutes of Health budget, which drives all biomedical research in the US, is on primary pain research.
A8 #CripTheVote We need greater #publichealth attention to #pain and #chronicillness and more public health dollars dedicated to pain research (and to developing approaches that provide relief but are not susceptible to abuse).