On January 2, I answered questions about chronic pain and access to pain medication on AXSchat, an international live twitter chat. The AXSchat hosts, Neil Milliken, Antonio Santos, and Debra Ruhl, began with a video interview on December 29th, that you can watch here: http://www.axschat.com/kate-nicholson/. The twitter chat took place on January 2nd, in which I prepared responses to six written questions posed by the hosts, which I have attached below. Preparing these responses in advance allowed me to interact live with people’s questions as they arose. It was a dizzying experience, especially for someone who signed up for twitter in 2014 but only began tweeting a few months ago, but also an exhilarating one, and I was so delighted to see people engaging around this issue.
Here are my prepared responses:
Q1 it’s estimated that 100 million people in America alone live with chronic pain & global numbers are even higher so why is #pain not talked about more? #AXSChat
A1. #AXSChat Social perceptions of pain haven’t caught up to current scientific understanding of #chronicpain. Everyone experiences pain. But when pain lasts 3-6 months or longer, it stops being a symptom and becomes a disease with unique features regardless of its etiology.
A1 #AXSChat (cont.) Understanding #chronicpain as a disease unto itself is critical to raising awareness and visibility.
A1 #AXSChat (cont.) Pain affects 1/3 of the US population according to the Institutes of Medicine study you cite, and severe or persistent, daily pain affect 50 million Americans according to the National Institutes of Health, more than cancer, diabetes, stroke or heart disease.
A1 #AXSChat (cont.) But less than 1-percent of the entire NIH budget –the driver of all medical research in the US—is dedicated to primary pain research.
A1 #AXSChat. (cont.) Our allopathic medical model tends to look at discrete body parts and diseases. Pain is also under-addressed in medical education. So is addiction.
A 1 #AXSChat (cont.) There are also cultural issues at play. Though we are a society that medicates minor pains readily, we are less inclined to support treatment options for severe pain.
A 1 #AXSChat (cont.) Anesthesia was discovered 100 years before it was fully in use because of a belief rooted in religion that we ought to feel pain, that it helps us grow our moral fortitude and experience its opposite, pleasure.
A 1 #AXSChat. (cont.) Some exposure to pain may accomplish these cultural ends, but surgeries without anesthesia and the failure adequately to treat severe pain only puts lives at risk.
A 1 #AXSChat. (cont.) Finally, people in serious pain often lead isolated, lives. They lack a voice. It is pain’s diffuseness and its relative silence that keep our societal response to this truly widespread epidemic from discussion and action.
Q2 If you experience pain how do you deal with it? Do you head straight for the medicine cabinet or do you have other means of coping?
A2. #AXSChat You can watch my personal story with severe, chronic pain, in my recent #tedtalks here: https://www.youtube.com/watch?v=u4vHSLeTe-s.
A2. #AXSChat (cont.) Initially, I avoided using much medication and, especially, opioid medication. Even though I was in severe pain, and couldn’t sit, stand or walk, I tried all other alternatives first.
A2. #AXSChat (cont.) I tried intensive medical interventions like lidocaine infusions, nerve blocks, even a surgery to try to redress the damage that was done from a prior surgical error. I used acupuncture, physical therapy, and a host of other, integrative modalities.
A2. #AXSChat (cont.) Ultimately, these treatments did not provide sufficient relief, so I tried opioid analgesics. Opioids were incredibly life-restoring to me. They didn’t allow me to walk again but sufficient space cleared in my mind so I could work.
A2. #AXSChat (cont.) I never used opioid medication in isolation. I continued to pursue other treatment in addition – acupuncture, cranial sacral/osteopathic treatment, and others.
A2. #AXSChat (cont.) Meditation, perhaps more than anything else over time, helped calm my upregulated nervous system and help reverse my neuropathic pain pathology.
A2. #AXSChat (cont.) The other thing that helped tremendously was an implanted medical device called a spinal stimulator.
A2. #AXSChat (cont.) It is widely accepted that appropriate pain management requires a multi-modal approach.
A2. #AXSChat (cont.) People in serious pain need access to a variety of treatment options – multi-modal treatment is the best protocol for pain management. Different things work for different people, or even for the same person at different stages of the disease.
A2. #AXSChat (cont.)One significant problem is that many integrative and complementary treatments are not covered or are under-covered by insurance, limiting access to treatment to privileged pain patients.
A2. #AXSChat (cont.) There were efforts to gain coverage of integrative methods during the passage of the Affordable Care Act, but those efforts failed. There are renewed efforts today to use the opioid misuse situation as leverage to get other kinds of treatment covered.
A2. #AXSChat (cont.) Much as I applaud efforts to expand access to treatment options, I believe that there are some patients, as I was one of them for many years, who still require the option of appropriate treatment with opioids. One shouldn’t be substituted for the other.
A2. #AXSChat (cont.) Opioids are the most powerful pain medicine we have.
Q3 Do people understand the difference between relying on pain medication to get by (dependency) and addiction? #AXSChat
A3. #AXSChat Even many doctors don’t understand the difference between dependence, tolerance and addiction.
A3. #AXSChat (cont.) The critical question is whether the medications are restorative and create function and maintain health, even if one depends on them daily for function.
A3. #AXSChat (cont.) Addiction involves the compulsive and continued use of a medication or substance despite endangering and destructive consequences.
A3. #AXSChat (cont.) Opioids cause the body to develop physical dependence, meaning that one has to taper slowly to stop using them. This is also true of other classes of drugs, such as medication to treat high blood pressure and some anti-depressants.
A3. #AXSChat (cont.) Sometimes with physical dependence, tolerance also occurs, requiring higher dosages in the case of opioids for the same pain-relieving effect.
A3. #AXSChat (cont.) Any credible addiction expert will tell you that it is the psychological aspect of addiction – a learned message of substance use generating rewards – that is the challenge in treating and overcoming addiction, not physical dependency.
Q4 Why do you think some drugs used for pain are less socially acceptable than others even if those others are equally dangerous such as alcohol? #AXSChat
A4. #AXSChat. That is a big question. Every culture has its ideas about which drugs are socially-acceptable and which are not. It generally has to do with who uses the medication – substances used by groups empowered by a society carry less stigma.
A4. #AXSChat (cont.) It’s a longer answer than serves twitter, but our ideas about drugs, especially opioids or controlled substances, are also tied historically to social ideas about race.
A4. #AXSChat (cont.) In the US, 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.
A4. #AXSChat (cont.) This history is part of the reason for our criminalization and “war on drugs” approach to addiction. The Global Commission on Drug Policy, with members from all political sides, determined the war on street drugs did nothing to curtail supply or consumption.
A4. #AXSChat (cont.) From prohibition forward, the punitive and criminalizing approach to substance misuse has proved a failure and something which endangers live rather than protecting them.
A4. #AXSChat (cont.) But we are back at it with a “war on drugs” approach to prescription opioids, with stepped up prosecution of pain doctors and regulatory limits to allowed opioid dosages, to the detriment of pain treatment.
A4. #AXSChat (cont.) The war on drugs approach is intensifying even though studies show that prescribing of opioids has dropped every year since 2012, and opioid-related deaths continue to rise. The big problem is black tar heroin and illegal fentanyl.
A4. #AXSChat (cont.) As is often the case, the law and policy are behind the times and are failing to address what is happening today.
A4. #AXSChat (cont.) There is no question that opioids became over-prescribed when pain became recognized in the 1990s as important to treat, due largely to pharmaceutical companies supporting pain studies, and aggressively engaging in direct marketing and advertising.
A4. #AXSChat (cont.)Most studies show that 70% of people who misuse opioids do not have a valid prescription for them. They receive the medications from friends or family or buy on the street.
A4. #AXSChat (cont.) 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.
A4. #AXSChat (cont.) 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. These drugs have no accepted, corollary health benefits.
Q5 Given the huge cost of hours of productivity lost to chronic pain ($300m in US) is it time society started to invest more in pain management research & training? #AXSChat
A5. #AXSChat Yes, absolutely, it is essential. We are not meeting the public health needs of our population in the US, or world-wide.
A5. #AXSChat (cont.) Given the prevalence of pain and its costs to society—and the fact that chronic pain is also the number one cause of long-term disability in the US—we must shift our attention to pain management and treatment.
A5. #AXSChat (cont.) Unfortunately, our response as a society to opioid abuse is having the opposite effect. Already we have far too few pain management specialists in the US and worldwide to treat the hundreds of millions of people in pain.
A5. #AXSChat (cont.) Pressures from fear of prosecution and regulations that interpose themselves into the doctor-patient relationship are hurting pain treatment.
A5. #AXSChat (cont.) Pain management specialists are protectively changing their practices to the detriment of treatment or are stopping the practice of pain management altogether.
A5. #AXSChat (cont.) The current environment is doing nothing to encourage young physicians to specialize in pain treatment.
Q6 If you could do one thing to make life better for people with chronic pain what would it be? #ACSChat
A6. #AXSChat I would change the current conversation and policy regarding our societal approach to opioid misuse and drug overdoses.
A6. #AXSChat (cont.) Our approach is hurting pain patients and is doing very little to help the other group of people protected by the Americans with Disabilities Act, the law I enforced for years, people with addiction and opioid use disorder.
A6. #AXSChat (cont.) Most addiction begins in adolescence and childhood trauma is a driver. Despite our focus on the #opioidepidemic, we’ve allocated little actual money to treatment of addiction.
A6. #AXSChat (cont.) 50 million Americans have severe or persistent, every-day pain, or 1 in 6, and pain is a serious problem worldwide. By contrast, 2.5 million Americans abuse opioids. You might think from the news cycle that those numbers were reversed.
A6. #AXSChat (cont.) Our policy approach to the #opioidepidemic is threatening pain treatment and pain management.
A6. #AXSChat (cont.) We have stepped up prosecution of doctors—many legitimately treating pain patients. CDC guidelines intended to assist primary care physicians who are under-educated in pain treatment are being enacted with maximum dosages for opioids in state legislatures.
A6. #AXSChat (cont.) Similar actions modeled on the CDC guidelines are gaining the force of law in Canada.
A6. #AXSChat (cont.) The former has the perverse effect of causing doctors to be unwilling to prescribe pain medicine even where appropriate for fear of prosecution. The later intrudes in the doctor-patient relationship and denies appropriate individualized care by physicians.
A6. #AXSChat (cont.) Major pharmacies like CVS are limiting the supply of opioids that patients are allowed to receive to 7 days, something untenable for #chronicpain patients.
A6. #AXSChat (cont.) There is a notice right now in the Federal Register for the FDA to remove all opioid medication over a certain dosage from the drug supply entirely. Some of the most draconian measures are being perpetrated on our Veterans in pain.
A6. #AXSChat (cont.) All of this is leading to forced tapering and discontinuation of pain medicine for people in severe pain. It has been tied quite clearly to suicide, with people writing notes that they simply can’t go on without pain medicine.
A6. #AXSChat (cont.) For those who fight to live, the other available option is obtaining illegal drugs on the streets, whose purity and efficacy is always in question.
A6. #AXSChat (cont.) The story of opioid abuse, driven by hysteria and fear, is in every news cycle. Even reputable publications do not look beneath the surface of studies they site, and employ them in an inflammatory way that fails to acknowledge the complexity of the situation.
A6. #AXSChat (cont.) We’ve created a desperate and life-threatening situation for many people who are already suffering with serious pain. In my experience, it is hard enough to function and create a productive life in severe pain, even with appropriate treatment.