Kate Nicholson on the Health & Human Rights of People in Pain

any type of drug. Hello, Psychoactive listeners. Um, Today We're gonna talk about an issue, uh that I've long been fascinated by, but it's becoming ever more important, and it's the issue that has to deal with the under treatment of pain, and especially chronic pain, and especially in Amerror Ka. I mean, we've all familiar with the overdose crisis and the over pushing and prescribing of opiois by the pharmaceutical companies and now the problems with overdose connected with fentinel

and other drugs like that. But there's been a flip side to this thing, which is that opiois have been around for a very long time, thousands of years in fact, for treating pain and the medication of pain is one that has gone through all sorts of changes and waves over the past years and decades and even centuries. Now my guest today is Kate Nicholson. Kate is I mean, a brilliant lawyer, graduated Harvard Law School many years ago, worked in the Justice Department Civil Rights Division for a

couple of decades. But the reason I'm having her on now is because she recently started an organization called the National Pain Advocacy Center, specifically devoted to advancing the healthy human rights of people in pain. So, Kate, thank you so much for being my guest today. I'm delighted to have you on, and uh, let's get started. Delighted to

be here. Your work dealing with people with disabilities influenced some of your thinking on this, but perhaps even more so was your own personal experience with really terrible pain for really long period of time. So just tell me a little more about what that was like and what you learned through the process. When my pain began, I was already working as a civil rights attorney in the U. S Department of Justice, doing primarily health related civil rights law.

So Sunday afternoon in August, I sat down to get to work like I always did, and after about thirty minutes, my back started to burn really badly. I felt a little like acid was eating my spine, and pretty quickly the pain intensified and a lot of the muscles in my body seized up on me and I ended up in a face plan on the floor of my office.

It turned out that I had had a surgery and a doctor had severed a part of the nerve plexus leading into my spinal cord, and the consequences only appeared when the nerves began to regenerate, scarring it adhesouldn't sort of embedded informed and caused a lot of problems for me, and so, like many chronic pain patients, I entered a real slog through the health care system for about three years.

There was a lot of inflammation in my spine and so they thought maybe it was this rare arthritic disorder. I had abnormal nerve conduction studies, which isn't so surprising since I had, you know, difficulty walking, but they thought maybe I had m S. So um, it took a long time to get to the bottom of what was going on. Meanwhile, you're working throughout this period. Mostly I was.

I took a few leaves of absence UM because I was also being treated throughout this this time UM and I tried gosh about thirty seven different kinds of treat and some of them were integrated, things like biofeedback and self hypnosis. And I tried a lot of different kinds of medication, though not opioids, initially, physical therapy, massage, you know, just a host of different things. I did have a surgery where they tried to go in and separate the

scarring um, but it was not successful. And so when did you start relying on opioids to make it? Was? It was that day. It was a really depressing day in my life because I went to the doctor. It was at this point I'm so disabled that my husband was literally having to carry me everywhere, was carrying me into the doctor's office. We've had this very hopeful surgery that we've been sort of thinking would would address things. And it was that day that the doctors basically uh said,

there will be no cure. Things are not going to get better, They're probably gonna get worse. We've tried everything, you know, we've tried nerve blocks, we've tried every medication and it's not working, and so now we think you really need to try prescription opioids. And I had avoided them up to that point because I was afraid of them.

I had read things and was worried about addiction. I was afraid that I would become, you know, sort of fuzzy and unable to to think, because my only experience with taking opioids in the past had been post surgically. But it turned out that that none of that was really the case. That once I did start them, I really improved. I wasn't foggy, I was I was in less pain and able to work better and to think better. And so they were really enormously helpful to me. Which ones,

what are you using? We ended up with methodone. Probably my doctor's positive. That's because the way it's formulated in the US, it also has an agent that helps with certain neurological conditions or neuropathic pain. So you get into the opioids, you're still doing with the pain. Now the opioids are helping, the methodons helping you're able to work.

And then I just sort of continued my life I mean I I still was very limited, so I had to argue cases locally lying in a reclining folding lawn chair, and overseas litigation across the country using video teleconferencing, which was brand new in the early nineties, at least for for the kinds of work that I was doing. So I remained limited my mobility, but I was able to

continue to work and function despite those difficult circumstances. And so, what's the connection between your being prescribed opioids, successfully deal with your pain and UH would then emerge? This is this massive over prescribing of opioids. How does your personal story fit into the bigger picture of what's going on in the in the country. Well, in a couple of ways. I mean, first of all, um, there was a liberalization

prescribing sort of starting in the eighties. In the early nineties, there was a recognition that pain was undertreated, and that is true, that remains true. Pain is the number one cause of disability both globally. In the US, daily pain affects some fifty million Americans and profoundly impactful pain like mind some twenty millions. So it is still a very

serious problem. But that genuine concern was in some ways sort of hijacked by pharmaceutical malfeasance and the promotion of the idea that if you had pain, you couldn't become addicted to these medications, the understatement of the risks, and and there were and really the risks are relatively low, but it's still a small but significant group of people

who were harmed. Right, So that was the connection. But also the other connection with me is that I didn't have cancer pain, so it is quite possible that I would never have been offered opioids, even after trying thirty seven different kinds of treatment over three years. Because when the Big CEA is involved, doctors are ready to prescribe opioids, but if it's something else, even back then, they would

be leery of this sort of thing. I remember when the late nineties mid nineties when Perdue Pharma, you know, the now infamous pharmaceutical comely owned by the Sackler family, came up with oxycontent and it initially appeared to be virtually racle drug, right that people dealing with serious pain, we're finding great relief from this thing, and it seemed like a very positive development. Um But obviously things, and

it may have been true for many people. UM, Yet at the same time we then see them beginning to promote these drugs much more aggressively to all sorts of people. UM And what's your take about what happened with that

with a Perduce farm in the other companies. The theory behind oxycoton is that if you have pain that lasts, you know, all the time, that taking a pill that's going to spike and then wear off every few hours might not be as effective as something that's going to have a slow, extended release through a period of time. UM and Oxyconton was marketed to do that. It wasn't as effective as it was marketed to be in terms of how long the range lasted, and there were some

problems with it. But I think the bigger issue with oxyconton was in the way it was marketed, the understatement of the risks and um the larger availability of it, and pitching to a lot of doctors and medical professionals who really are not very trained in dealing with pain, right right. Again, That's that's the other problem. And I sort of have this under acknowledge condition pain partly because it's ubiquitous, because we all have pain at some level,

but most people don't really understand that. Well. Acute pain is adaptive and normal, and people who have a genetic condition that makes them not able to feel pain will not live very long. So it's necessary that we experience pain to teach us to rest or seek medical care. Chronic pain is something very different. It's often described by experts as a disease because it actually isn't adaptive. It damages the body, affecting almost every organ system, and that's

why it requires treatment. And I'm just thinking, you know, because also people talk about real pain or unreal pain, or physical pain versus emotional pain, or or how it's all mixed up, or pain exists in the brain, or you know, different cultures experience pain differently. What's you're thinking about this reality of pain? Well, I think it's all real, whether it's physical or emotional pain, right, I don't I

think it's all real. I think there are spectrums, Like I said, the difference between sort of the kind of pain that everyone experiences in a small pain and having intractable pain that's more like a disease, just as there's a difference between people feeling sad and people having intractable depression. I think there are there are spectrums in many illnesses, and it is in the brain. It is experience in the brain, but a lot of our body operates from

our brain. Um So that's that's, you know, sort of a funny Cartesian idea of the division between mind and body that that just isn't biologically accurate. The thing that is true about the connection between emotions and pain is that the way pain works is it's a you know, a noxious signal. But if we didn't have an emotional response to it, we wouldn't react to that signal. And so there is a connection between how we experience pain and the emotional experience of pain. So I think it's

it's a spectrum. But um so you lived with this pain in a very serious way for what almost twenty years, So you had this relatively successful surgery that moderated quite a bit. That's true. I mean it was a little more complicated than that. Um. I was using a medical device that has advanced a lot, called a spinal stimulator that was starting to improve things for me a little bit. And then I had the surgery on the spinal cord issue UM and moved to Colorado, was starting to learn

to walk again and was really improving. UM. And that's what brought me into this current conversation because I was finally, after you know, almost two decades of trying to trying to get a better quality of life, that possibility was really in front of me. And I was rehabilitating and learning to walk again and going down on the medication. And I went into my doctor's office one day, UM, and she said, I'm not going to prescribe opioids anymore to any of my patients, and you won't find anyone

else in the area who's willing to either. And this was and what had happened is that a local clinician who was well respected had fallen under d e a investigation for opia prescribing, and that really just sent shock waves through the whole medical community locally. And this was coming at a time and prescribing in America started to drop in there was a growing awareness UM and pushed back in the press. I was worried. I said, well,

can't you at least give me a taper plan? Because I knew that people who take opioids long term become physically dependent on them, which is different from being addicted it. It lacks the sort of compulsive use, but it's dangerous to stop the medication abruptly, and she just wasn't willing

to help me. It's luckily I had a prior treatment team in d C where I lived before, and I was able to go back there and they gave me a taper plan, and um, I was to get off of them, and as I said, I was already improving, and so it didn't cause any major problems in my personal condition, but it did let me see what was coming in the environment. So now you're able to live a life where you have occasional pain and the opioids or what. I still have continual pain, but it's it's

at a very low level. It's not nearly as severe. Um it doesn't limit my activities very much, and I don't require use of any medications anymore. I do use a lot of complimentary and adjunctive techniques, and I started meditating very early on when I had pain, and using mindfulness techniques. But yeah, I no longer require use of prescribed opioids. So it instigated you to get into this issue as an advocate. Was that experience of having a doctor I want to cut you off the opioids right

away like that. I mean, you must have been furious exactly what I was mostly scared. I mean, I've been working so hard to get better and and I thought everything was gonna, you know, collapse in front of me. And I had been hearing through the DISAPL the rights community about more and more people being cut off of their pain medication. So I got up and did a ted X talk and started advocating about you know, the

appropriate use of opioids and people being denied care. And I was also interested in that because of some of my previous work. As I mentioned to you, I was a health related civil rights attorney, and some of my early cases were in the HIV and AIDS crisis. And what we saw was that in these public health crises, the people were trying to help often become stigmatized and

then denied care. And so one of my big cases was this case called Bragdon versus Abbott, which was about whether someone even with asymptomatic HIV could have access to basic dental care. And we had to win that right all the way in the U. S. Supreme Court. So it is a phenomenon of the I think public health crisis, that people often become stigmatized, and that that those stigmas

can result in discrimination and barriers to healthcare. And so having had that professional experience and then the personal experience, it seemed important for me to be able to get up and talk about it. And people were sadly going to take me seriously because I was someone who used them for many years, got off of them with no trouble,

and was not using them anymore. And did you find that there was already a substantial advocacy world of people trying to make this an issue, or were medical associations alert to this, or the or the doctors mostly running scared as well like your doctor had been. I think mostly when I first stepped into it, there were a lot of people running scared. Uh. Since that time, there's been more advocacy, I meet, the American Medical Association has

certainly become more involved. A lot of things changed in the conversation In the United States when the Centers for Disease Control and Prevention issued guidance for prescribing opioids for chronic pain um and a lot of the recommendations in the guideline are very sensible, but a couple of the provisions were very concrete, and they became a really weaponized and used by law enforcement, insurers, UH, and a lot of policy actors to limit prescribed opioids in a way

that meant that people who need them to manage serious conditions, including cancer and sickle cell disease and multiple scurosis, had trouble getting access at the pharmacy, and doctors either abandoned their patients, stopped prescribing forcibly tapered people, which is a dangerous practice that public health agencies have now come out against,

but it's still happening to people all the time. There was a recent update to a survey done the University of Michigan that looked at nine different states, and they found that more than fifty percent of primary care providers will not take on a new patient who uses opioids to manage paint. A different survey found are reluctant to so people are losing access not just to medication, but

to healthcare altogether. It's such another example of sort of widespread physician fear and ignorance undermining effective treatment for people. We'll be talking more after we hear this ad you

and I have talked briefly about. I sometimes see more and more analogies between what's going on in this issue of pain management and what's going on in the issue of tobacco harm reduction, where you have these vaping devices and heat not burn device and East cigarettes which are actually can be quite effective in helping long term smokers

quit smoking. But because people got so freaked out about young people, you know, using East SIGs and vaping and jeweling, that there's massive crackdown, and you now have doctors believing all sorts of things are absolutely false according to the scientific evidence, and being fearful of giving correct information, are oftentimes being more guided by inaccurate headlines than they are

by what's really going on. And people read about, you know, the opioid overdose crisis, which is very real and very serious, and then they think they can't prescribe opioids. And meanwhile, I think, right, I mean early twenty years ago, fifteen years ago, what was driving the increase in drug addiction and over those fatalities. I think was this over aggressive marketing by the pharmaceutical companies, by the produce pharmers in a range of others. But for the last ten to

fifteen years. You know, pharmaceuticals opioids I think play less and less of a role, and doctor over prescribing plays even less of a role and more and more it has to do with heroin or fenenal, or people getting drugs that are legally prescribed to somebody else but now

they're getting their hands on it. Basically, that's what's going on, right right, I mean, I think it's always been the case if you look at the Service for Drug Use and Health that even in the days when UH prescription opioids were showing up in in overdose stats, if you look at all the surveys, it looks like most people who were using non medically or misusing them in the greatest risk for addiction or overdose, or were not actually the direct recipients of a prescription from a doctor. The

biggest problem even with prescribed opioids was diversion. And that doesn't mean that some people weren't prescribed and opioid and became addicted. That of course happened as well, but it's

a relatively small percentage of people. The bigger problem where these leftover supplies and medicine cabinets are uh, distribution channels in hospitals where people were able to get their hands on prescribed opioid that wasn't given to them by a doctor directly, but because there was liberalized prescribing, the supply was it was so much greater. So, I mean, I think that's certainly true. There are lots of sort of chinks in the armor and the discussion of the addictiveness

of these medications. Neither. Director Nora Volcaw, who I think has very little interest in understating the problem since her job is fighting, you know, sort of against addiction UH and misuse, says that even when they're prescribed for chronic pain, which is sort of longer term prescribing, and so the risks are higher um and even in groups of people who have pre existing risk factors, whether they speaking commin at mental health issues or prior substance huse, problematic prior

substance huose. She says that well documented studies say the risk is less than eight percent, and often you know, it's it's much lower than that. Now, that's still a significant it's a small percentage, but it's a significant percentage of right. But my understanding also is that if you look at the people who are being prescribed opioids by

physicians for their pain. That among the people who have never had an issue with misuse of substances before, the likelihood that they're now going to get addicted exists, but it's very low. It's one percent, it's less than one percent. Whereas most of the people getting in trouble are oftentimes people who had issues with substance abuse earlier and now they're in a pain situation, and uh, they may be

more susceptible to getting in trouble. And of course that people who do have pain and are prescribed to opioids and then end up what they used to sort of too, are probably the most vulnerable in the current environment. Well, you know, I remember there was a doctor, his name

was Hurwitz. I think he was the subject of a sixty minute special report, And there was a certain category of physicians that I regard as basically among the most courageous physicians on the face of the earth, right, And these are physicians who were willing to deal with pain management issues among people who were or had been addicted to illegal drugs, because the reality is using these opioids illegally doesn't necessarily prevent you from having pain, and you

walk into a doctor's office and the doctor's got a hard time saying, does this person in real pain or they just trying to scare me so that they can get a prescription for opioids if they want to use for their whether it's recreational, whatever you want to call it. And the doctors willing to live on the edge in dealing with that sort of stuff I just immense admiration for. And they went after him with a vengeance. I remember

reading the cases, the appellate cases in his matter. I do think that, you know, the physicians who are willing to deal with the people who have pain and a use disorder are very few and far between. And the problem is, you know, it's already dangerous just to cut someone off precipitously or forcibly taper them who has pain and no evidence of a use disorder. There are many studies that show it puts people in a much threefold

greater risk of overdose or death by suicide. I mean, it's a very dangerous practice that's happening to lots of pain patients today. But it's even more dangerous if someone may have a use disorder right there in some ways the most vulnerable patients. But you're right about what you said a little while ago about what's driving the overdose crisis at least since we started paying attention to it in the last decade um, and that is largely a

very potent, tampered with street supply. The latest numbers from the CDC show that it's you know, deaths orrupt related to illicit ventnyl stimulants play an increasing role. Heroin also plays a role. Dess related to preserved opioids are actually down at this point, but we never saw the huge numbers that we've seen until people were really using this sort of dangerous street supply. A lot of policymakers now believe that pain isn't really undertreated, that it's just a

pharmaceutical ruse. I mean, what we see is these crazy pendulance things in this country, and what I've seen the sacklers put in scare quotes opioid crisis to try and pretend that it didn't exist or understate it um And today in laws and policies, policymakers are putting undertreated pain

when they talk about the history of what happened. Also in these quotes to say that that didn't really exist, And so I would definitely say that, you know, pharmaceutical companies in the Sackler family in particular, you know, hijacked the conversation and did a lot of damage. Um. But it's a more complicated than that, right, I mean, there are some studies that show that drug over to deaths have been on a steady upward trajectory since the nineteen forties,

and the drug of choice is just changed. You know. My own view is that aggressive pharmaceutical marketing and liberal prescribing did harm, and that the gen is a little hard to put back in the bottle, you know, because once you start with prohibition, you end up getting a more dangerous supply. Yeah, I was gonna say, I just remember, you know, years ago, maybe back in the late seventies

or eighties. Uh, there was a friend of mine, a drug expert named Dr John Morrigan at the Cuney Medical School, and he loved puncturing popular myths about drugs, and he coined the term opiophobia to refer to the irrational fear

of opioids. Uh. And what he meant by this was that you had cases of patients who would be lying on their deathbed, dying from cancer and horrific pain, and would be refusing opioids to manage their pain because quote unquote they didn't want to die in addict or their family members who were re using the pain medication, or nurses and doctors who actually believe that stuff. And we're allowing people to die in horrific pain because of this

pervasive opiophobia. You know, I guess in a way it almost seems like a semi American sort of perspective that we have a hard time finding that reasonable balance. Either we're in a kind of super moralistic, prohibitionist mentality about this drug or that, or on the other hand, we're in some super capitalistic marketing. There is nothing wrong here, and finding that middle ground is the one that becomes such a challenge. Absolutely, the lack of nuances is extraordinary.

And even though as I said, I could see some of this swing even in stigmatization with HIV, now that I've sort of entered the drug policy conversation, nowhere are there more myths, um and is there more sort of shame and misperception than in anything related to drugs? Right, And a lot of this has been going on in the US for centuries, and so when they're being cautious now in the crackdown, I mean, part of this comes from greater wariness. Part of this comes from law enforcement

agencies beginning to go after some doctors. Some of it comes from new state laws and regulations, things like, I mean, how does this movement to you know, so dramatically restrict access to opioids happen? Well, I think a lot of it was driven by sort of the media narrative and the way the story is told, where you had a lot of stories about, um, you know, a teenager who had a bum ankle uh and went to the doctor and you know it was the high school football star

or the cheerleader and then became addicted. They were very compelling stories. No one wants to believe that they're sending their child to a doctor and condemning them eventually to death. Uh. And we did have, of course, arise in overdose deaths.

Now it's interesting because MIAs Lobbits wrote a really interesting piece for the Columbia Journalism Review, and she talked to some folks who were keeping databases of stories, and journalists were really just interested in that story they were looking for people who had never had issues before, who were not using them at a party, but who had been prescribed in opia by a doctor, because that's a compelling victim.

And I think doctors became shamed and blamed for causing people's teenagers to die on the streets, which just a pretty pretty powerful message. And you know, we did let it go on for a way too long before anybody

stepped in to do a lot about it. But you know, one thing that also kind of piste me off about that whole period was obviously you have these stories that you're talking about and and doctors being careless and incautious, but the fact of the matter was was that even among people getting addicted in that way, you know, what was called iatrogenically addicted by by physician prescribing huge numbers of these fatalities were actually not taking too much of

the one drug they're being prescribed. They involved what might be called fatal drug combinations. You know, it might have been a football player, you know, who was injured and was taking oxies, but he goes to a party and gets drunk, not being aware that combining alcohol and oxyes um is a thing that will kill you or oxyes

and benzoiazepines valiant type drugs. And meanwhile, the government and all the sort of drug educators are reverse to putting out the information that is really dangerous is the combination of drugs that may feel really good if you combine them in the right amount, but it just double that

level may stop your breathing. So, yes, doctors were to blame, but the failure of public health authorities and government officials and school authorities I think also played a very big role in educating people about what were the safer or more dangerous ways to be using these substances, whether you already be using the medically or whether you were using them recreationally or something in between without question, and that

continues to be a problem. I mean, these deaths were always like what they call polypharmacy deaths, right, They usually involved multiple drugs used in combination. One of the states that had higher death rates found that the average number

of substances in someone's body who died was six. Right, But the headline would read heroin death oftentimes oxy death, and there's I mean, and the fatal drug combination thing would either never show up in the article, maybe because they didn't have the autopsy report as yet, or when it did, it wasn't part of the headline because it wasn't provocative and because talking about what was it, Polly drug overdose doesn't make for a catchy headline in the

way that heroin or OxyContin or something like that does. Absolutely um and in fact, all of the drugs, even the drugs that are attributed to prescription opioids, the way they're counted, that doesn't mean that the opioid, prescription opioid caused death. That means that a prescription opioid was in someone's system at the time of death. They could have also had fentinyl, heroin, alcohol, benzo diazepine in their system and cocaine, right, but it would still be counted as

a prescription opioid related to death. It caused this culture of real fear, I think, and you know, not very scientific conveyance of the problem, and that continues to be the case. I mean, very few people talk about drug combinations, certainly in the media. Fentinyl is now in the media a lot, but you know, even then, they don't really talk about the difference between illicitly produced fentyl and you know, pharmaceutical use and and all of that. It's just sort

of you know, this the scare tactics. Yeah. I mean what's different about the fentanyl now, of course, right, is that fentanyl is the drug that can kill you all by itself. I mean, it's fifty times more potent per graham or whatever than morphine, and so that is a real issue. But it's typically you know, being uh mixed with other things as well, so we we can suspect the fentanyl is the primary thing driving it, you know, But meanwhile, hundreds of thousands of people are receiving fentanyl

post surgery and hospitals. It's one of the best drugs you can give for that sort of thing. And the fentanyl overdose problem in America has nothing to do with fentinyl being diverted, right, It's fentanyl being produced illegally in China, Mexico and being imported here in ways that are impossible for law enforcement to stop, which is why accurate information

is all the more important. So so, so, okay, I mean the evolution of this thing, you know, as the crackdown mounts um on openly prescribing what are the key ingredients to all of this? Well, I think that, as I mentioned, I think we were caught a little as

a society flat footed. And in sixteen, the Centers for Disease Control and Prevention in the United States issued this guidance to try and sort of help guide doctors in safer prescribing practices, because, as you mentioned, because pain is sort of ignored as a as a condition and under undertreated and underrepresented, it's also underrepresented in medical education doctors.

Even though pain is one of the top clinical complaints in the world, very little uh in medical education addresses the treatment of pain, at least in basic medical education. And so the CDC stepped in and said, well, we need to, you know, explain what the risks areta doctors and encourage them, you know, to try other things first to treat pain, and when they are prescribing, to prescribe at the lowest effective dose for the shortest effective period

of time. And all of that was a sense able thing. What happened, though, is that there were a couple of provisions related to this problem, like the dentist who prescribe fifty oxygotten after dental surgery. Um, the attempt to kind of contain prescribing for acute pain, so you didn't have a lot of people with this leftover supply in their in their medicine chests, and the cd said CDC said that with a lot of apute pain conditions, you're not going to need more than a three to seven day supply.

And then then in a different provision, there was this other problem that they identified, which was in the nineties, there was this idea that you just titrated dose to to palliation, so um you kept going up, and there was as long as someone was still in pain, there

wasn't a danger in giving them increasingly higher doses. And so there was this feeling that people were on an unsafe level, or that we didn't want to start people on an unsafe level because there were some studies coming out showing that there was, you know, an elevation of risk with an elevation of dose. The absolute risk still

isn't extraordinarily high. There was a study in North Carolina that looked at people who'd been prescribed even at higher doses and found that their risk of overdose was something like point zero to two. It wasn't hugely high as an absolute matter, but your risk definitely goes up depending on the dosage you're prescribed, and so in that provision they said be careful prescribing more than fifty to ninety

morphine milligram equivalence. And that's just an attempt to take all of these different medications and put them on the same scale. That's what they mean by equivalence. What happened is, in the haste to address what people saw as many people dying on the streets, state legislatures enacted strict limits to opioid prescribing for keep prescribing. Insurance companies came in and said they want to prove more than a certain

morphine milligram equivalent. The d e A and state medical boards started to look at prescribing patterns through prescription drug monitoring programs. Then doctors started getting letters, letters from police agencies, or from medical review boards, or from d e A agents, from medical boards, from the use attorney's offices, just you know, different levels of law enforcement. And that's sort of the

thing had been going on. I think back in the eighties and early nineties, right there was a period when the d e A Office of Diversion Control and others were sending these letters, and I guess they backed off, maybe backed off too much and then started redoing it again. Maybe, But in those days, we didn't have prescription drug monitory programs in all the states. Now that information is pretty

widely available, and what's happening now is even worse. There's sort of the companies that run these agencies come up with what they call a knarc's care score. They have an algorithm that tries to rate someone's risk for misuse, and people are being denied care based on that. And you know, dosage is one thing. Whether you have had more than one providers is another, which can be a proxy for doctor shopping and trying to get medication that

way to misuse. But it also it can be that you live in a rural area and have to go to an urban area to see a doctor, or your doctor's practice clothes so you had to go get a new doctor. I mean, there are lots of more innocent reasons.

There was just this huge proliferation of policies. I mean, one study found out was something like almost five hundred in a period of a few years, and a lot of them are very strict and um I actually met with this the CDC, as did some others who were seeing problems in this area, and the CDC came out and issued a corrective and said that was a misapplication

of its guideline. But that correction has not filtered down to the lives of patients, and so there are a lot of a lot of patients who are really caught in the lurch. And I would say that, you know, there's also this problem, of course, that it doesn't affect everyone equally, you know, because of the way we've waged the drug war disproportionately against communities of color, and because

of systemic racism. Even in pain treatment, there are lots of studies that show that the pain of BIPOC folks are rated less severe by many clinicians because of false

beliefs about biological differences that do not scientifically exists. I mean, we have a woman in our group went into an e er black woman and the nurse called the cops on her just for reporting pain because they thought she was trying to get drugs, right, right, racist beliefs that black people don't experience pain in the same degree as white And then you have pharmacies in black neighborhoods that

are less likely to carry opioids. I mean, it's just it was pervasive throughout the entire system in many regards, absolutely, and even you know, with the pharmacies that's even controlled for for income, it's remarkable, but a lot of pharmacies in black neighborhoods don't stock opioids. Let's take a break here and go to an ad with Drug Policy Alliance, and we were fighting some of the stupid policies and

stigma that people in method on maintenance confronted. And one of the issues we we dealt with was that there was, first of all, a less is more ideology, so doctors were saying, well, sixty milligrams. All the scientific research showed that closer to a hundred milligrams would be the appropriate dose for maintenance, and that that's what you should aim for. But the less is more ideology meant that people were being under prescribed method on therefore it wasn't working as well.

Therefore there was an anti sentiment among patients. And the second thing that happened, and this, you know, is that whereas a hundred milligrams might be the appropriate dose for the majority of people and some could deal with lower, then you get these occasional odd balls for whom the appropriate dose was three or four or five hundred milligrams right just the way that they were wired. And I imagine you have the same phenomenon happening in the pain

management area. Yeah, you definitely do. I mean you have people who are hyper and hyper metabolizers of opioids. Lad Europe, they actually test for that. We don't do that in the US. And so yeah, there are people who are

going to require more. But because of this range that was written in a guideline that was designed as recommendations for primary care physicians and not as law policy, we now have a rapid uptake throughout the health care system, sort of suggesting that anybody over ninety as a risk,

and so people are being forced to lower doses. There's one study of Medicaid patients in Vermont that showed the average time of discontinuation was twenty four hours, which is really dangerous, and about half of them had to be hospitalized as a result. But even for those that are just tapered down to ninety, it's being done in a quick and reckless manner, and for some people they really needed to be on those higher doses, and their quality

of life suffers. Terribly. And you know, again, the studies showed this kind of tapering. You know, there could be careful tapering with a lot of other adjunctive therapies thrown in that can absolutely you know, improve the lives of some people. But the way it's happening in the real world is endangering people's health, distables and people. I hear from people all the time who are acutely suicidal. I hear from people who have lost someone to an overdose

after the pain medication was denied. I hear from people who are now bedridden, who can no longer work, and families who are financially devastated. It's causing a great deal of harm. And you know, some eight to thirteen million people use opioids to manage pain. That's a pretty big

number of people to be affected. So by and large, this proliferation of state laws and regulations and all of the other things around it, in terms of the shift by physicians and by insurance companies, one could argue then that it's done some good in terms of pushing physicians to correct a pre existing problem with overprescribing and encouraging them to look at alternatives opioids before they go to opioids, but that in terms of the harm it's generating, in

terms of depriving people of access to opioids for legitimate needs, that probably this push is doing a lot more armed than good. When when push comes to shove, I think it's doing both. I mean, I think that's sort of the problem. Just like liberal prescribing. I mean, some people who may have needed medication got it when it was only limited to cancer, but a lot of people were

harmed as a result of liberal prescribing. And then when you have a sort of clampdown yet it's it's helping some people who may not be exposed who it would have been vulnerable, but it's also hurting a whole other group of people. You know, we just talked about the issues around race and racism. In terms of pain management, we've touched on the issues around class and that people a better resources can look around as you did, right

and able to find somebody, whereas that's not the case. Um. But then there's also a gender issue, right, I mean, aren't women more likely to request, need or whatever pain killers? Well, yeah, there's a huge gender issue in in the pain area. Some studies suggest that up to of people with chronic pain are women, or at least female identifying, and there are studies also showing that women experience more pain, experience

pain more severely. There is some recent interesting data around that that's sort of based in how we've traditionally had testing. So all of our biomedical testing is done on animals, rats, and mice. And it was only in sten that ni H, the National Institutes of Health and United States anyway, started to say that you needed to use more than just male animals when you're trying to find out more about diseases.

But at least in animals, entirely different cells are involved in what makes pain become chronic in male and female animals, uh glial cell activation in males and T cell activation in females, And so there may very well be a biologic reason for this disparity. Of course, there may also be a number of social reasons. But what we find is I like to say that pain is sort of a me to issue in in a similar way I used in the hashtag pain too, because women are far

more often to missed or disbelieved. We also know that relationships matter. You know, whether you go to a provider who believes your pain and listens to you, just listening to your story. Right, that could be a milierative rather than being dismissed. That can actually be a form of treatment.

Or these studies where they show that a physician who sits down by the bedside and touches the patient for a few minutes and talks to them for ten minutes, people to require less prescription drugs, get out of a hospital fast, suffer less pain you know, goes up significantly as a result of that simple human interaction. Right. Other countries have fewer problems, I think, at least in sort

of Western Europe and other places. And that is they also I think their healthcare systems are set up to deal with pain, that they'll let people off of work long enough to really heal from something. You know that the incentive in this country is very much, you know, take a pillcy you can get back to work. So yeah, I think there are structural, interpersonal, and and belief systems all play a role. The tough thing is that, you know,

pain responses is really individual. It's individual because pain comes from a variety of conditions and ideologies. You know, you may have inflammatory pain from an autoimmune disorder, you may have neuropathic pain from a neurological problem. They're going to be treating me to be really treated differently. They're not

the same kind of problems. So diagnosis matters a lot. Severity, you know, is wide ranging, and so a system like we have in the United States for for payers, for insurers covering some things and not others, different incentives come in. But I think we do need to expand access to these other modes. That's what's happening sometimes is that insurers will say, Okay, you have to do this or that, or you have to try all of these things, and

only if you exhaust them do you get this. And and people are also pushed into things like you know, in more interventional things, um like nerve blocks or surgeries or medical devices which you know also have a pharma related potential issue. I think that maybe the next big issue we see. And all of those things were helpful to me, right, I had a spinal stimulator, which is

an a planet surgical device that helped me. But you're you're sometimes seeing people being pushed into procedures that also are more dangerous to that person than taking you know, a prescribed opioid is I'm curious when you talk about, you know, doctor viewers who cut you off suddenly, you know, and you're a lawyer. Um, has any doctor ever been successfully sued from malpractice for suddenly cutting somebody off their opioids and having that patient die or something that's terrible happening?

You know. I haven't heard of a lawsuit. I have heard of a lot of people, you know, having heart attacks or things like checkcardia, you know, and then there's this, you know, as a lawyer, their causation arguments, and people like to poke holes and say that sort of like what we sound the George Floyd trial, right, you know, it was the fimal But anyway, there are lots of attempts to muddy the waters about why someone had something

medically happened. Um, the only thing I know of that happened is that I believe in New Hampshire, for the first time, maybe last year, a state medical board actually sanctioned to doctor for doing that. So most of the letters and sanctions that go out are about you're prescribing too much and this was you endangered this person's life. I'd love to see a story like that get major media attention because that's the only way to some extent,

to correct what's been going on, you know. Now, you know, I should also just come clean in this because even as I've been sympathetic and actually you know, devoted part of my organization's resources to advocating for the sorts of things that that your organization is now advocating for, I had my own personal pain experience, you know, I mean I had you know, when I was twenty four, I suddenly had a terrible back pain where I couldn't stand up straight for a few weeks, and it was terrible.

Finally got so bad and the doctor said, well, this was in the in the mid eighties, and he said, well, there is an intervention. It's called chemo pap pain. We inject something into your spine and and it can work well, but there's a one percent chance of paralysis. So I

turned down that treatment and miraculously got better. And then when I was in my young third ease, the pain just became overwhelming and I got m R I or cat scan, and they diagnosed you know, herniated disks, and I was on pain killers and this and that and and some massage would work a little bit for an hour or two, but not really, and a surgeon was going to operate on me, and um, you know, under the advice of a of a friend who was physician,

he said, don't get it. And what he suggested. I read a book called Healing Back Pain by John Sarnol and he was, you know, a serious physician at the Rusk Instituted at n y U Medical Center. And his view, in fact was that the vast majority of people who got diagnosed with herniated disks and we're suffering lower back pain, that in fact their pain had nothing to do with

the herniated disc right. And he had a whole theory basically that said that when you look at m RIS and cat scans, you see huge numbers of people with hernia this and no pain. And conversely you have used numbers of with pain but no herniated diss So the notion that there was a cause of relationship between the

two didn't seem to work for a well. And his theory was that in fact, what was going on was that one was suffering from an underlying emotional pain, anger, frustrations, whatever, and that the brain played a trick whereby the emotional pain got converted into a physical pain and and and he assumed that the method was that the brain would curtel the flow of blood around the nerves and muscles

to that part of the body. And what the pain was, whether it was back pain or sciatic or something else, was to something think culturally determined, and that in the end when that there was basically nothing wrong with my back, and I just needed to accept this diagnosis. I needed to get right off the opioids and the benzos, benz

andi esopines. The doctor put me on and I followed his approach, and it worked, and it caused me to believe that maybe a very significant number of people in the country suffering from kind of a chronic back pain or sciatica might have something similar. That we're living in a culture where this type of form of pain and

disability is very culturally accepted. It's mostly it's number one caused the misdays of work, that yes, people do have conditions like you had, and many others have where they have an accident or you know, other sorts of things, but that in fact it was a type of emotional pain being morphed into a physical pain for which opioids um basically didn't work, and for which surgery was inappropriate.

He pointed out that people who had had surgery for herniated disks were just as likely to suffer recurrence of pain three years later as people who had never had the surgery. And so it caused me to believe that when you look at a lot of the people suffering from these these addiction and the misuse of opioids, it may be from certain types of pain that we believe is physical that feels incredibly physical, because you can't believe that that level of pain could actually just be caused

by emotional stuff. Absolutely, And I have friends who had told me that exact same story about John Sarno's book changing their lots. So I have I've heard that many times. Do you think now that the pendulum is swinging back towards a more balanced perspective, that the CDC is getting his act together, that maybe the doctors are being to learn, or are we still swinging in the wrong direction. I

think that we will remain opiophobic for a while. I have seen public health agencies, including the CDC and the f d A and the Department of Health and Human Services come out against, for example, force tapering. I have seen no slowing in the number of random, you know, daily emails and phone calls I received from desperate people all over the country. It has not filtered down to the lives of the people that you know who are

most deeply affected. And although I do think there was some recognition UM, Otherwise these public health agencies wouldn't have come out and said, you know this, and this is a problem and we're trying to you know. And the CDC did say to policy makers, hey, you know, these were not intended to be strict limits. The science behind these recommendations is nowhere in the or where it would need to be to do what you've done with it. I still think that we will be in um an

opioid phobic period for some time. I think the general public still thinks we are in a place where prescription opioids and over prescribing are driving desks on the street. Politicians still think that we are back ten years ago and that they need to be really aggressive, and frankly, the progressive media has no appetite for this side. They have bought the big bad pharma, opiids, bad narratives so

completely that they do not want to touch. Do you have any any significant allies among elected officials in Congress or even at the gubernatorial level in places yes, um I can not be terribly public, but there are some who are who are allies. Some of them unfortunately are no longer. There where allies a few years ago. But there's no public champions on this issue, not many. There are a couple, ironically, they intend to be the doctors who are in the Congress who have a deeper understanding

of this um it is. It's so interesting as someone who is politically progressive myself at you know, oftentimes it's the more libertarian or conservative representatives that can see the side of it. I think a lot of progressives other they're not all just see this as a pharmaceutical ruse.

Part of my doing this program is the hope that people will listen to this and have a more enlightened view of drugs and drug policy and drug treatment in their own lives right, whether it means about the drugs they take, or about the patients they have, or about the politicians they support. Now you started this organization, I'm very excited about it. I know other people as well. I mean, where do you see the places where you think you're going to be able to make the greatest

difference in the coming years. Well, one aspect is just bringing together I think the pain community and the sort of drug policy and addiction communities that these communities have been divided largely because of the stigma around drug use. Um pain patients for the first time had the stigma of addiction thrown their way, and so they want to point finger and blame people who they see as misusing

medication or who become addicted. People with addiction some want to say, hey, it's you people in pain who messed it up. If you people hadn't been such whiners, then evil pharma wouldn't have come in here, and we wouldn't have all of these people dead and all of these people addicted, and so there's a lot of finger pointing, and so one of the things the organization does is sort of bring those groups together. And we have a significant community council of people with a lot of different

types of pain. We have a community council people in recovery from addiction. We have a science and policy council of people who are experts in drug policy and addiction and pain management, as well as a number of health policy and civil rights and disability rights experts and sort

of legislation. And one of the things we're trying to do is, in addition to playing whackable and reacting and stopping these policies, which we have been fairly successful at at doing, is to get everyone at the table and come up, you know, what do we need? What would good policy, good paid policy look like that represents everyone's needs because the problem has been that no one has

looked at this very comprehensively. I mean, we know we need more coverage of certain things, and I've worked with that in some issues, and I'm on a task force for women in pain, and they're all of these silos focusing on different subsegments of the issue. But I feel like there's not enough coming together with a variety of lived experiences and expertise to really tackle the big picture. See that this is a complicated situation that requires some

complicated answers. Okay, listen, I mean, I'm just incredibly impressed with the work that you're doing. I'm very grateful for your taking the time to have this long conversation with me, So thank you so much for joining me, and uh, you know, more power and everything you're trying to accomplish

the organization that you started. Drug Policy Alliances is by far the superstar in this arena and has been such a great ally, um and I've learned so much from people within that organization and community, so uh, it's just an absolute it honor. Psychoactive is a production of I Heart Radio and Protozoa Pictures. It's hosted by me Ethan Nadelman.

It's produced by Katcha Kumkova and Ben Kbrick. The executive producers are Dylan Golden, Ari Handel, Elizabeth Geesus and Darren Aronovski for Protozoa Pictures, Alex Williams and Matt Frederick for I Heart Radio and me Ethan Nadelman. Our music is by Ari Belusian and a special thanks to Avivit Brio, Sef Bianca Grimshaw and Robert Beatty. If you'd like to share your own stories, comments, or ideas, please leave us a message at eight three three seven seven nine sixty.

That's one eight three three psycho zero. You can also email us as Psychoactive at Protozoa dot com or find me on Twitter at Ethan Nadelman. And if you couldn't keep track of all this. Find the information in the show notes.