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

Fifty million Americans suffer from chronic pain. Most of us know what happened when pharmaceutical opioids were over-marketed and overprescribed in the United States but few people appreciate how far the pendulum has now swung in the opposite direction, with many doctors now refusing to prescribe opioids even to patients who have clearly benefited from them. 

Kate Nicholson served as a civil rights attorney in the U.S. Department of Justice for 18 years, during which time she developed intractable pain that left her unable to sit or stand and barely able to walk for nearly two decades. She recently started an organization, the National Pain Advocacy Center (NPAC), to advance the health and human rights of people in pain. This is an issue I’m passionate about, which is why I recently joined NPAC’s advisory board.

I'll talk to Kate today about her own experience with this topic, the various ways states and doctors have restricted the prescribing of opioids, and what makes this a particularly American problem.

Listen to this episode and let me know what you think. Our number is 1-833-779-2460. Our email is [e-mail]. Or tweet at me, @ethannadelmann.

Learn more about your ad-choices at https://www.iheartpodcastnetwork.com

See omnystudio.com/listener for privacy information.

Episode Transcript

Speaker 1 (00:00):
Hi, I'm Ethan Nadalman, and this is Psychoactive, a production
of I Heart Radio and Protozoa Pictures. Psychoactive is the
show where we talk about all things drugs. But any
views expressed here do not represent those of iHeart Media,
Protozoa Pictures, or their executives and employees. Indeed, heed, as

(00:23):
an inveterate contrarian, I can tell you they may not
even represent my own. And nothing contained in this show
should be used as medical advice or encouragement to use
any type of drug. Hello, Psychoactive listeners. Um, Today We're

(00:45):
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

(01:06):
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

(01:29):
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

(01:51):
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

(02:11):
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

(02:35):
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

(02:56):
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

(03:19):
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

(03:40):
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

(04:04):
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?

(04:24):
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,

(04:47):
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

(05:09):
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,

(05:30):
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

(05:51):
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,

(06:15):
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

(06:37):
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

(06:57):
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,

(07:21):
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,

(07:43):
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

(08:05):
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,

(08:28):
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

(08:51):
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

(09:13):
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

(09:35):
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

(09:58):
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.

(10:19):
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

(10:43):
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

(11:04):
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

(11:25):
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

(11:46):
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

(12:11):
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

(12:31):
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

(12:52):
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

(13:13):
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

(13:35):
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

(13:55):
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

(14:16):
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

(14:38):
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,

(15:01):
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

(15:23):
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

(15:44):
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

(16:06):
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

(16:27):
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

(16:51):
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

(17:21):
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

(17:42):
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,

(18:05):
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

(18:25):
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

(18:46):
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

(19:08):
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

(19:30):
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

(19:54):
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

(20:14):
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

(20:39):
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

(21:00):
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

(21:24):
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

(21:44):
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

(22:07):
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

(22:28):
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

(22:49):
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

(23:09):
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

(23:30):
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

(23:52):
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

(24:15):
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

(24:37):
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

(24:58):
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

(25:18):
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

(25:41):
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

(26:02):
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

(26:26):
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.

(26:46):
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

(27:07):
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

(27:28):
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

(27:48):
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

(28:10):
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

(28:32):
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

(28:54):
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

(29:15):
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

(29:38):
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

(30:00):
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

(30:21):
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,

(30:44):
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

(31:05):
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

(31:26):
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

(31:50):
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

(32:12):
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,

(32:34):
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

(32:54):
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

(33:15):
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

(33:36):
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

(33:57):
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

(34:17):
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

(34:38):
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

(34:58):
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

(35:18):
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

(35:38):
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

(36:01):
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

(36:22):
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,

(36:55):
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.

(37:17):
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

(37:38):
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

(38:03):
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

(38:26):
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

(38:50):
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

(39:12):
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

(39:34):
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,

(39:57):
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

(40:19):
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.

(40:40):
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

(41:02):
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

(41:24):
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

(41:46):
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

(42:08):
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

(42:30):
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

(42:52):
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

(43:13):
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,

(43:36):
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

(43:56):
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,

(44:17):
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

(44:39):
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

(45:00):
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

(45:20):
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

(45:42):
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

(46:04):
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

(46:26):
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

(46:46):
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,

(47:10):
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

(47:32):
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

(47:54):
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,

(48:15):
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

(48:37):
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

(48:58):
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

(49:19):
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

(49:41):
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.

(50:03):
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

(50:24):
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

(50:46):
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

(51:06):
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

(51:31):
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.

(51:53):
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

(52:13):
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

(52:36):
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

(52:57):
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

(53:18):
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,

(53:40):
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

(54:04):
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

(54:25):
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

(54:48):
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.