The Chronic Pain Epidemic: What’s to Be Done?

[MUSIC PLAYING] DAVID FREEMAN: Hello, everybody. My name is David Freeman. I’m the managing editor of
the impact and innovation section of The Huffington Post. I’m also the moderator
for today’s panel, which is about what can be
done about the chronic pain epidemic. This event is presented jointly
with The Huffington Post. And this program is part of
the Dr. Lawrence H. And Roberta Cohn Forums. Dr. Cohn passed away in January. But we’re pleased to have in
the audience Roberta Cohn, and their daughter,
Leslie today with us. The event is also presented and
associated with Harvard Health Publications. The Forum, The Huffington Post,
Harvard Health Publications are streaming this event
live on their websites. It’s also streaming on Facebook. So people can feel
free to join in. And joining us today we have
four panelists– three here and one remotely. To my immediate right
is Cindy Steinberg, who is the National Director
of Policy and Advocacy US Pain Foundation, a member of the
Interagency Pain Research Coordinating Committee of
NIH, and policy council chair of the Massachusetts
Pain Initiative. So welcome. Dr. Vaughan Rees to her right
is an addiction specialist and lecturer on Social
and Behavioral Sciences at the Harvard T.H. Chan
School of Public Health. Dr. Anne Louise Oaklander,
who is Associate Professor of Neurology and
Director of the nerve unit at Massachusetts General
Hospital, Harvard Medical School. And joining remotely
from a secure location is Linda Porter,
Director of the Office of Pain Policy of the
National Institutes of Health, and co-chair of the
National Pain Strategy. I should also mention
today that we originally were to be joined by
Josephine Briggs, director of NIH Center for Complementary
and Integrative Health. But she couldn’t be here. So thanks to her as well. So the program will include
a brief Q&A at the end. And you can e-mail questions to
the forum at HSPH.Harvard.edu. You can also participate in
a live chat that’s happening on the forum site right now. And so let’s get started. Chronic pain affects
millions of people. I guess it’s actually
tens of millions. But I think we’ll
find out about that. So let’s take a look at a clip
from the University of New England of someone who
lives with chronic pain. ERNIE MERRITT:
Through the years, my job has always been
working with my hands. I went to high school
and then the army, and then became a plumber. And at work I was working in
a confined space too long. And I went to stand up and I
couldn’t stand up straight, and ended up going
to the doctor after. And they found out it
was a herniated disk. So from there I had the
one back surgery where they took part of the disc out. And I was good for a year. I went back to work. And sitting on my
toolbox, I went to get up, and my leg gave out. Went back to the doctor. And they said a disc
fragment broke off. You need another surgery. They said we have
to do a fusion. And they put the
rods and screws in. They took some more x-rays,
like six months, eight months, then a year. Said the fusion didn’t take. Your screws are moving
in your vertebrates. It was 2001 was
the last surgery. I woke up with a
brace around my waist. I said, what’s that for? And they said, well,
that’s temporary. We want to make sure that it’s
going to have time to fuse. I still wear the
brace to this day. I never get back to work after
that, because I didn’t recover. So I wear a $2,000 brace
to be able to stand or sit. For the aches and pains I can
only take Tylenol or Advil, because I can’t take medications
because I have another disease. It’s narcolepsy. But I need something,
because it’s almost like an arthritis building. It’s hard to explain
it to some people that don’t have chronic pain. DAVID FREEMAN: So Cindy, you
work on federal and state pain policy. And you’re also someone who
lives with chronic pain. Tell us about the
scope of the problem, and also your own experience. CINDY STEINBERG: Sure. I learned about
chronic pain because of an accident that happened
to me more than 15 years ago. Yet I still live every
day of my life with pain. I had a career in business
that I really loved. And one day I was
opening up a file drawer. And unbeknownst
to me, moving men had stacked cubicle walls
against the back of a file drawer. And I opened it. And the cabinet
and all the walls fell on me, pinning me
underneath the cabinet and the walls and crushing me,
and causing extensive damage to my spine and back. And I spent five years
searching for help, trying many different
therapies in what was difficult and confusing and
sometimes demeaning experience. I finally found a terrific
doctor who helped me. But he insisted that
I give up my career. So he was right. And I walked away
from a career I loved. I hung a sign at a local library
that I was starting a support group for people with pain. And people just
started showing up. So people with carpal tunnel
and migraine and disk disease and rheumatoid arthritis
and cancer and neuropathy and with conditions
I’d never heard of like vulvodynia and CRPS
and Ehlers-Danlos and Marfans and pudendal neuralgia. And more and more people
just kept coming each month. It was all ages– teens to their
90s, men and women, all socioeconomic backgrounds. And it’s been 16 years. And I’m still
running that group. At this point, more
than 350 people have just come to this small
local group in the Boston area. And a remarkably
common experience for everyone that
comes to the group is that they’ve had
to see at least four or five practitioners
before they can find help, if they ever do. It’s frustrating. It’s exhausting. And it’s costly. Pain devastates the very
fabric of people’s lives. Marriages sometimes fall apart. Friendships are lost. Many are unable to
work and earn a living. They can’t care for their
children and their families. Their self-esteem suffers. They’re unable to enjoy things
that give them pleasure. And they become
housebound, isolated, and sometimes depressed. And then, of course, there
is the relentless physical experience, which may be
burning, stabbing, gnawing, knifing, and other
unpleasant sensations. I equate it to feeling like
you’re a prisoner trapped in your body. But it’s worse than that. You are a prisoner who
is being tortured 24/7. And there’s no means of escape. And yet when people seek help
from health care providers, they’re often met
with skepticism and doubt and mistrust and an
appalling lack of compassion. David talked about the numbers. The scope of chronic pain
in America is enormous. Pain is the number
one reason why Americans visit their doctor. It’s the leading
cause of disability. The Institute of
Medicine has documented that 100 million people
live with chronic pain. And approximately 10% of
those have pain so severe they’re disabled by it. Yet, chronic pain is
largely misunderstood by policymakers, the media,
and the public at large. And there are many challenges
in treating chronic pain. But a critical one
now is the tendency to conflate the opioid epidemic
with the pain epidemic. People with substance abuse
disorder and those living with chronic pain are largely
two separate groups of people with very little overlap. Opioid pain medications are
one of many possible treatments for pain. They don’t help everyone. And for the people they do
help, they don’t completely take the pain away. But for many pain
sufferers who take them responsibly and
legitimately, they are a lifeline that
allows them to function and have some quality of life. DAVID FREEMAN: So
that’s interesting. You talk about this kind of
conflation of the opioid issue and chronic pain. Vaughn, you’re an
addiction specialist. So what’s your take on that? How do you balance
this idea of wanting to make sure people get
the help that they need without stigmatizing
them, and also protect them against
needless risk of addiction? VAUGHAN REES: Well,
David, it’s certainly become a big problem in the
United States in recent years. And we’ve seen an
enormous increase in uptake of the use
of opioid analgesics in the general population. Clearly– and Cindy makes
a very good point that– these are medications
which serve enormous good for people who have
problems of chronic pain. Unfortunately,
what we’ve seen is that the use of
opioid analgesics is not necessarily confined to
the population of patients that have chronic pain problems. And we’re seeing an increase
in use of opioid medications among substance using community. We’ve seen over the past
decade and a half something like a fourfold
increase, not just in sales of opioid medications,
but in the rate of use of those medications,
and indeed, overdose deaths attributable to
opioid analgesic medications. So as we’ve seen a
proliferation of use of opioid analgesics
potentially to benefit patients with chronic pain
problems, we’ve seen similarly problems
in substance use problem among the substance
use community. So finding that
balance of providing appropriate medications
for chronic pain patients while minimizing or
preventing consequences, those consequences
of substance use is critical from a public
health point of view. DAVID FREEMAN: And so
Anne Louise, you’re a neurologist studying pain. So you have your own
unique perspective. And you treat pain patients. So what is your perspective
on chronic pain? ANNE LOUISE OAKLANDER: Well,
I think they brought me into back clean up. And so I’m a physician,
actually, a peripheral nerve specialist. And my interest in
pain really came out of knowing that quite a bit
of unexplained chronic pain is due to abnormalities
affecting the nerves that carry pain sensation, which
is the so-called small fibers, the thinly myelinated
and unmyelinated axons. So I have a very
different background than most pain specialists
who are anesthesiologists. And indeed, they’ve
brought their tools that they learned for managing
acute and operative pain into chronic pain with
the best of intentions. But unfortunately,
the studies really hadn’t been done to look at
the efficacy and the safety of a lot of these treatments. For instance, such as nerve
blocks, for the long haul. And so I think we’ve learned
maybe a bit later than we would have hoped that we have to start
thinking about new approaches. Some of the work from my lab
is helping to address that. One of the studies– or I should say that
much of the work we do relies a lot on bringing
objective measures into the pain field, of
which the most useful are tiny little skin biopsies
taken under anesthesia from the lower leg. And they come into my lab. I direct this facility
here at Mass General. And we can actually
get objective evidence to know when a
patient might have neuropathic pain as a cause of
their particular pain problem. This has turned out
to be very important. For instance, it
helped us to identify a new type of small fiber
neuropathy that actually affects kids and young people,
arguably the worst people to be stuck with this
chronic pain problem. And also in a
prospective study we were able to use these
methods to show that about 40% of people with the
label of fibromyalgia have objective evidence
that in fact they have this kind of
peripheral nerve injury. What’s the point? We’re not just trying
to call it another name. But the point is
is that if you get diagnosed with a peripheral
nerve neuropathy, there’s a path forward. And there is objective
treatments that in some cases can really help people to
get beyond the problems which you two were speaking about. DAVID FREEMAN: So it’s
a way to new treatments, and also to de-stigmatize
this in a way to get this objective
measure of pain. ANNE LOUISE
OAKLANDER: Absolutely. And I echo your comments
that in the past, many of these patients with
what I call “mystery pain,” meaning there is no clear– you
had a very clear cause of it. But many of the patients develop
chronic pain problems out of nowhere. And the part of their
body that is painful doesn’t have an apparent injury. So as Cindy said,
this used to be attributed to psychopathology. And I’m not a psychiatrist. So I can’t address that. But I do know that a lot
of these people in fact have neurologic potentially
treatable causes of their chronic pain. DAVID FREEMAN: OK. Well, Anne Louise, you
mentioned batting cleanup. Actually, that
falls to Linda, who was kind enough to join us
from a vacation in her– I think it’s in Wyoming. So thank you very much. So you’re the co-chair of the
National Pain Strategy, which was released last March by
the US Department of Health and Human Services. And this is the first
plan from the government to reduce the
chronic pain burden. So why did the government
need to get involved to create a plan like this? And what is the result
of that plan’s release? LINDA PORTER: So you
know, the government recognized along with external
stakeholders across the country that we really need a
change in the way we perceive pain, the
way we manage pain, and the way we help
to prevent pain. As Cindy pointed out, there
are hundreds of millions of people who live with pain. On a daily basis there
are tens of millions who have severe pain
that’s not treated well enough for them
to prevent disability to keep from their lives. Some can’t go to work. And can’t go to school. Some drop out of their
social activities. Despite the fact that we
spend hundreds of billions of dollars every year
on better paid care, we are not preventing these
people from suffering. So we have a health care
system that’s not addressing some of the main problems. But it goes beyond that. We also have on the
other side of this sort of a culture of
prescribing opioids as sort of a practice
that has become more prevalent over the years,
rather than providing patients with alternatives
to opioids to reduce that reliance on opioids. So this prescribing
practice I think has made a big contribution
to the opioid epidemic. On the other hand,
we need to balance that if we are to
help people move away from this sole reliance
on opioids with better alternatives to pain care. So some of the major problems
I think that we recognize that we need to deal with
is that most pain care now is delivered in the
primary care setting. And the physicians who are
providing care at that level, they don’t have the
appropriate training in order to manage complex pain
conditions to really identify the individual nature of pain
and the individual responses of people to their treatments. They don’t have
the time to spend with people who have complex
pain, persistent pain. And they don’t have the
resources to offer up other therapies, whether it be
physical therapy or mindfulness or cognitive behavioral therapy. They’re not available to them. And so at that level
we’re dealing not only with a lack of ability to
treat patients appropriately, but we’re also dealing with the
stigma that people with pain live with. So what we needed and
what was recognized– not just by the federal
government, again, this is a national, not
a federal pain strategy– is that we need to move
away from an approach to pain on a unimodal everybody
has the same treatment, everybody has the same problem
to a multidisciplinary approach that’s patient-centered
based on the needs of the individual person,
and that can provide them with a set of alternatives
that best approach their personal strategies. In order to do
this, we really need to approach it from a number
of different directions. We need to provide access to
care for the many, many people who don’t have appropriate care,
whether it’s because they live in rural settings, whether their
insurance companies don’t cover the appropriate care, or
enough of the appropriate care that they get. They may be restricted
on many levels for so many physical therapy
treatments, things that we know are helpful like
yoga and mindfulness are very rarely paid for by most
people’s health care providers. So we need to take
this to a level where this multi-disciplinary
approach is provided in a biopsychosocial
model of pain. So pain is not just
a physical problem. It needs a
psychological approach. It’s really sort of
a multimodal, again, patient-centered and
integrated approach. We also need a
better research base so that the programs
and the offerings that we do have for
people with pain are appropriate to their needs. We understand the risks. We understand the benefits. And we understand the costs. And we can weigh all
those things out together. So the National
Pain Strategy takes all those different
aspects and approaches them with the lead of the federal
government over a number of different variables. And I hope we’ll go into
that a little bit more. But the last thing I want
to mention at this point is that we do, as
Anna Louise mentioned, have evidence to improve
some of the approaches that we use for pain care. We aren’t necessarily getting
that evidence base out to the clinic. And so this is another place
that the National Strategy hopes to make improvements
in health care. If Josie Briggs had been
able to attend today, I think she would
have made a point to let you know that the center
that she directs at the NIH has focused a lot of attention
and a lot of its resources on looking at the benefits
and risks of therapies that are considered perhaps
nontraditional, or that are part of a
multi-disciplinary approach. So we know, for instance,
through clinical studies that massage can be
helpful, that acupuncture can be helpful, that
yoga can be helpful, and that mindfulness
can be helpful in a lot of these situations. But access to those programs
and payment for those programs is something that we’re really
missing from the big picture. But the evidence
base is expanding. And I think that’s an important
piece of the move forward. DAVID FREEMAN: Well,
it sounds complicated, especially as you’re
saying, getting it out to the primary care physicians
to put this plan into action. So we’ll get to that
in a few minutes. But let’s turn to a clip now. The rest of this session
will be more about ways to address the epidemic. So here’s a clip from KBIE,
a documentary called Oh, My Aching Back, which
is provided courtesy of The Huffington Post. So it talks about exercise as
a way to treat chronic pain. SPEAKER 1: 3, 2, 1, Hit it. Go. Don’t let your knee deviate. Yes. Yeah. Go, go, go! You got it. Hurry. Come on. Get the bar set up
for your own body. SPEAKER 2: The human body
is an extraordinary machine. It’s engineered
to bend and move. But when things go wrong,
there can be mystery pain. SPEAKER 1: Kelly gets a
little special attention because she’s coming back from
an injury, a little flare-up. KELLY: I just have
that phantom back pain that didn’t come from injury,
didn’t come from an accident. SPEAKER 2: At Fulsome
Physical Therapy, these folks are making
an investment together, using sweat equity to
conquer that chronic ache. SPEAKER 3: Couldn’t
sleep at night. I mean, wicked pain. SPEAKER 2: And recover
from major injuries. SPEAKER 4: Two spinal fractures,
four pelvic fractures, and a hand fracture. SPEAKER 2: So what
would possess people with debilitating pain to put
themselves through all this, risking more soreness
in the process? KELLY: I don’t have
that pain anymore. It’s zero. SPEAKER 3: It’s immediate. And I get strong right away. DAVID FREEMAN: So let’s
go back to Linda a bit. You know, she was talking
about this pain strategy. Again, it sounds complicated. And I’m wondering in my
experience going to the doctor, I don’t have chronic pain. But there’s a really push
to get people in and out pretty quickly, which I guess
whatever happens to Obamacare is still going to be an issue. So what exactly needs to
change from that level? How is the strategy
involved in National Pain , how is the implementation
going to work? LINDA PORTER: So the
implementation structure is in place now, and
is moving forward. It’s being coordinated through
the Office of the Assistant Secretary. And it will actually
involve themes that were set up in the report– the National Pain
Strategy report– that cover a number
of different areas. So we’re looking at
population research so we can better understand
the prevalence and the issues surrounding pain,
as well as being able to monitor over time how
different interventions are a benefit to pain. We’re also looking at
provider education, which I think is foundational
to improving how we care for patients. So there will be resources
made at different levels and multi-disciplines for people
who [INAUDIBLE] care with pain. We’re also looking at– and
I think this is a really important piece– is the payment and the service
delivery for pain care. And I think this gets
a little bit more to your targeted question that
we are running pilot studies through the Centers for
Medicare and Medicaid to see how public and private
care is actually now covered, pain treatments, and
to make adjustments in how those are paid for
through those insurers and for reimbursement
for the doctors according to the best practices. So how does a multidisciplinary
approach to pain, how do we pay for that? What’s the cost
benefit to the insurer? And most important, what’s
the outcome to the patient? So those questions are
being addressed with along with better
prevention strategies. So using prevention
strategies in the workplace. These are prevention strategies
that are self-management based, which includes things
like healthier lifestyles, exercise, of course,
should be included in that. And also on public
awareness– and I think this is also a key
piece to the strategy of how people who do not
suffer with chronic pain perceive those who do. The stigma attached
with it, and especially for those who are in
need of taking opioids through their pain there’s
an additional level of stigma there. But also helping
people with pain communicate with their
physician so they can ask what their options
are, where they can get access to those options,
and how, again, this patient-centered
team-based approach can improve their
situation and their lives. DAVID FREEMAN: Can you talk a
bit about disparities in pain? Chronic pain? LINDA PORTER: Sure. So disparities is kind
of a global term that includes differential
responses to pain and pain treatments based on
genetics, racial differences, cultural differences. But I think the biggest
focus of the National Pain Strategies for disparities is
how do we best help people who are in vulnerable populations? Whether it be young children who
can’t communicate their pain, whether it be older people
who have different responses to drugs. How do we best manage them. How do we reach out to them
perhaps through a community setting. But also people in racial
groups or ethnic groups, low socieconomic groups,
or live in rural areas who are having difficulty
getting even a primary care physician, and especially
getting a sort of a specialized program set up for them
because they don’t have access, or they can’t afford access. So disparities is
a broad term when it’s addressed to pain
because it’s partly the individual disparities. But it’s partly the care
piece of it as well. And this is a huge issue
that the Pain Strategy hopes to begin to address. DAVID FREEMAN: So it sounds
like a pretty complicated plan. And I want to ask
you about funding. It’s a big plan. Who is going to pay for it? And what about research
upstream from the implementation of the plan? What’s the funding
picture look like? CINDY STEINBERG: So
it’s a great plan. It was put together
by 80 experts from the medical community,
the patient community, the scientific community. And I applaud Linda for
co-leading that effort. But right now the truth is
it’s an unfunded mandate. So basically there is no budget
allocated at HHS right now to fund the National
Pain Strategy. The kinds of things
Linda was talking about was sort of small
demonstrations here and there. But they’re not
going to fund it. And we heard from the ION
that $600 billion annually is spent on pain now
because of lost productivity and direct health care costs. I gave the example of the
people in my pain group. Everyone’s had seen four
or five practitioners before they find help. So there’s a lot of
wasted money we’re spending right now that
if people recognized, they would see that
the cost of doing this would be saving money. And right now it’s not funded. DAVID FREEMAN: What
about research? You can talk a little about
the funding for research, basic research in pain. CINDY STEINBERG: Yes. Actually, there is another
federal strategy underway right now that Linda
didn’t yet mention, which is called the
Federal Pain Research Strategy that’s a companion
piece to the National Pain Strategy. Linda is also working on that. And the intent of
that is to look at what is needed in
basic biomedical research. We do not yet understand the
basic biological mechanism of pain in the human body. And because of that, we see that
treatments we have right now are inadequate. So the kind of groundbreaking
work that Anne Louise is doing is not that well funded. Right now the NIH has a
$30 billion a year budget. But less than 2% of it goes to
basic biomedical pain research. And we really need
to change that. So the Federal Pain Research
Strategy right now being worked on is an effort to point
us in the right direction. That’s going to need
to be funded as well. DAVID FREEMAN: So what about–
let’s return to this issue of kind of– you’ve talked about conflation
between this chronic pain problem and the
opioid abuse problem. So Vaughan, can you tell
us a bit about that? I mean, how do you
avoid conflating these things to
protect patients, from stigma, but also from
the risk for addiction? VAUGHAN REES: Well, that
is the big challenge I think that we’re
seeking to try to resolve. Clearly what we need
to do is to work to ensure that pain medication
meets the needs of chronic pain patients while reducing
access to opioid analgesics among those who are
engaging in the use for recreational purposes,
or for purposes of abuse. We’ve seen a number
of plans put in place that have helped to reduce
that, providing better information to patients,
ensuring that patients don’t make those medications available
to other family members or friends. Proper disposal of medications
has been an important strategy. We’ve seen the introduction of
prescription drug monitoring programs in virtually every
state in the United States, which again, have
helped to reduce use of opioid medications
in inappropriate ways. We’re also seeing
better strategies to reduce diversion
of opioid medications, both from the place of
manufacture and distribution, which make their way into
criminal black markets, as well as sales of
illicit opioid medications on the streets. So law enforcement
strategies have also been somewhat helpful in terms
of reducing the prevalence of use in that respect. But overwhelmingly, the
reason for the substance or the opioid
analgesic epidemic– abuse epidemic–
is a consequence of the pharmaceutical industry
for promoting these products in inappropriate ways, both to
consumers and to prescribers. And as we start to develop
alternative strategies to opioid medications,
and we start to reduce inappropriate
promotional activities by the pharmaceutical
industry, we will see reduced demand
for opioid medications at a population level. Something like 99% of
hydrocodone medications prescribed globally
are prescribed in the United States. And that’s a
statistic which speaks to the power of the
pharmaceutical industry in promoting that product
at a national level. And I think we recognize
the need for alternatives for providing opioid
medications in a safer way. And I welcome the plans that the
panelists have described today. DAVID FREEMAN: I want to ask
Cindy about your perspective on it also. But that statistic
you mentioned. Was it 99% of the
prescriptions were written for the US patients? VAUGHAN REES: For hydrocodone. DAVID FREEMAN: For hydrocodone. VAUGHAN REES: And Vicodin. DAVID FREEMAN: And what is
so different about the US than, say, Europe, or
other parts of the world? VAUGHAN REES:
Well, I think we’ve got a very aggressive
pharmaceutical industry that has actively promoted
the product in the US. And it’s partly a consequence
of a number of factors, which include prescriber preferences,
patient preferences, and federal regulations. DAVID FREEMAN: Cindy, do you
have a different perspective on that? CINDY STEINBERG: Well, I do
have a different perspective on that. And that is, I said,
and Linda said, that 100 million Americans
are living with pain. That is a lot of people
living with pain. And I think at this
point right now because of all of the sort
of tamp down of prescribing, we’ve seen prescribing drop now. I think it’s 25%
prescribing is down. Yet, the opioid overdose
deaths are continuing. Why is that? Because I think we’ve moved
beyond prescription opioids, which are now harder to get. And we have abused
[INAUDIBLE] formulations. And people unfortunately with
a disease of substance abuse have moved to illegal substances
like illicit fentanyl that’s coming into this
country from overseas. And so for example,
Massachusetts Department of Public Health released
data just a few days ago. And they’ve been doing some
incredible groundbreaking work in data, showing that
only 8% of people who died of opioid abuse
between 2011 and 2014 had a legitimate script
for that medication. And so it’s not the
pain patient, per se, that’s abusing the medication. Unfortunately now there are
illegal substances coming in. And people with
substance abuse who can’t get the
medicine any longer have now switched to that. And it’s a huge problem. So we need to really
work on substance abuse at the same time that
we work on chronic pain. DAVID FREEMAN: So I want
to shift gears a bit. And I’m not sure we
talked the other day, and I’m not sure of
whose term this was. We talked in terms of
an activated patient. It it’s your term or your term. But Anne Louise, can you
talk about what advice given your perspective,
what advice you would have for patients
other than to make sure. And you talked about having
seen multiple practitioners. How can you be an
activated patient to get the care that you need? ANNE LOUISE OAKLANDER: You
know, I think it’s tough. When you have chronic
pain, you don’t feel well. A lot of people
develop depression, difficulty exercising, income
problems, as Cindy mentioned. But somehow it’s very
important to try and maintain some level of hope for the
future and to persist, I think, and to push the
health care system to try and allow you access
to those physicians who might be able to find
something new for you, to keep up with new discoveries
that are being published, and not to just accept
well, this is all we can do. You’re going to be like this
for the rest of your life. So again, work– a lot of
it sponsored by the NIH , like our own work, is making
new discoveries and offering new options to patients. I was working this morning on
our next NIH grant proposal. Did you hear that, Linda? LINDA PORTER: I did. ANNE LOUISE OAKLANDER:
Going in in February about preparing for clinical
trials of a whole new set of treatment options that
have nothing whatsoever to do with pain pills or opioids for
a specific subset of patients. DAVID FREEMAN: But it sounds
like a very inefficient process to keep at it, to keep
at it, to keep at it. Isn’t there a way
to short circuit that, to go straight to a
practitioner who can give you the help that you need? ANNE LOUISE OAKLANDER:
The problem, as we’ve said several
times, is education. One of the conditions
that my group works on– tarlov cysts– is a
completely unappreciated cause of back pain. Perhaps some of the
people in the video we saw earlier might have that. And it’s something that’s
actually visible on MRIs. But radiologists have been
taught that tarlov cysts never cause problems. And it’s actually treatable
with quite respectable results from procedures. The big problem is at
the level of education. Most physicians, let alone
other health care providers, have never heard about this. Fortunately, I’ll put some
of our papers on this topic, including the first one ever
we got in the New England Journal of Medicine. It’s the highest
profile journal. I’ll put it on the website
so you can learn more. DAVID FREEMAN: Thank you. So do you want to talk briefly? We’ve only got a few
minutes left before we start with our questions. But I wanted to get
your perspective, Cindy, of the activated patient,
given your own experience. CINDY STEINBERG: Absolutely. And I think Anne Louise
really made a good point about trying to continue to
find things that help you. And you know, unfortunately,
though, for most people living with pain, there is
no cure right now. And I think the
first thing comes with accepting that we
are not understanding it enough to find a cure. And therefore you have to take
an active role in managing the pain yourself. And I think the most effective
thing, as Linda mentioned, is to find a number of
different treatments that work for you, that
perhaps each one helps reduce the pain maybe 10% to 15%. And overall, you’re reducing
the pain 50% or 60%. And you can function. And so it’s individual. What works for one person
doesn’t work for anyone else, or for other people, often. So you have to find the right
combination of treatments that work for you. And that requires your
being actively aware and trying different things. DAVID FREEMAN: So talking
about trying different things. I wondered if
everyone on the panel could weigh in on this question
about these alternative or non-pharmaceutical
approaches. And Linda, maybe
you want to start. What’s your perspective on the
sorts of things that maybe need to be implemented more broadly? LINDA PORTER: You know,
we’re finding out now that so many of these
non-pharmaceutical approaches are effective, especially
when they’re bundled together and are directed to the
needs of the individual. I think Cindy made a good point. When we say chronic
pain, we’re looking at so many different
pain conditions, and so many different patients
that respond individually. But we do know for a number
of different conditions, that certain of the
non-pharmacological approaches are effective. It’s research-based. They’re probably effective for
other pain conditions as well. But the research
hasn’t been done. So you know, something as
simple and probably very cost-effective as massage
for low back and neck pain can be very helpful,
especially when it’s bundled into a
multi-disciplinary package. And I think that
integrated care is really an important component of the
non-pharmacological approach, because it’s typically not one
individual treatment that’s going to help a patient. But it’s a package of
patients that’s designed to help that individual. It’s not an easy way to
manage a chronic problem. And it’s not easy
for the patient. And it’s not easy
for the physician. But you know, the
patient awareness piece comes into this so that they
know what their options are. They know what might
be best for them. And they can work with
a well-educated provider to know which of those
treatments is best. And I know, it’s a complicated
picture, as you said. One step at a time. DAVID FREEMAN: And I wonder if
[INAUDIBLE] here on the panel. Anna Louise, do you want
to talk about the things that you think are most
perhaps under used, the sorts of treatments
from your perspective? Non pharmacological treatments. ANNE LOUISE OAKLANDER:
I agree completely that we’ve relied
too much on popping the pill, which kind of fits
well into our current health care model. And of course, those pills
do help a lot of people. But there are entirely
other strategies. Probably the single two
most important alternative strategies that I see– number one is stopping
smoking and improving cardiovascular risk factors. Because when you smoke, your
blood vessels clamp down. And it shuts off the
blood flow to an area that may be diseased
or not in good health. I’ve had chronic pain
patients whose pain has been dramatically
improved just by getting them to stop smoking. And weight loss,
of course, is very important for a number
of diseases, including arthritis and musculoskeletal. Weight loss in many
cases can reverse diabetes and
diabetic neuropathy, which is a major cause
of painful neuropathy here in the US. So when we hear
alternative treatments, we think about yoga and massage. But in addition to those
effective treatments, there are other things
that we can do, even in our own homes, that
can have a direct impact. DAVID FREEMAN: Well,
thank you very much. We were talking earlier too. And especially in light of the
election here in Massachusetts, I guess recreational marijuana
use has been approved, as well as in California. So it seems like we’re at the
beginning of this new shift in our drug policy. Vaughan, I wondered if you
could talk about marijuana specifically, but then also
anything else that you think that is underused from
your perspective that could help people with chronic
pain, other than drugs. VAUGHAN REES: Sure. Well, I don’t want to suggest
that marijuana is underused. But. Marijuana certainly does
have some analgesic benefits for many patients,
and is preferred over opioid medications because
of the different qualities that it has both in terms
of its analgesic qualities as well as its other
psychoactive effects. As we’ve seen new
marijuana laws introduced at a state-by-state basis,
including medical marijuana laws, decriminalization,
and indeed, legalization. We’ve seen an uptick
in marijuana use in virtually all of
those jurisdictions. What we find interesting
is that particularly in those states with
medical marijuana laws, we’ve seen a decline in the use
of opioid medications, which suggests– we’re not completely
sure we understand what’s going on there–
but it does suggest at least that patients who are
making use of opioid analgesics are making a switch to,
or preferring, marijuana. The long-term
consequences of that, we don’t completely understand. And of course, we do have
concerns about uptake in use of marijuana,
particularly among youth. So so there may be some
potential benefits. But, of course
risks of introducing decriminalization, and indeed
legalization, of marijuana. But it does provide one
potential alternative. And there are some
pharmaceutical products that have been
approved by the FDA for the purpose of analgesia
among other effects. But in addition to marijuana, of
course, as Linda has mentioned, there are some great
non-pharmaceutical strategies. And I would also include to
the list that she’s mentioned, cognitive behavioral
therapy, which helps patients to think
differently about the pain and to gain some
mastery of management over negative thinking or
catastrophic thinking that often causes pain
symptoms to become worse. And exercise therapy has
been particularly helpful for many individuals. And the use of
those strategies– those psychological
interventions– in combination with
pharmaceutical or pharmacological approaches
may be particularly beneficial and reduce reliance on
pharmacological methods of providing analgesia. So there are options. And the research base
is rapidly developing to help to literally loosen our
dependence on opioid analgesia. DAVID FREEMAN: So and what
about your experience? I know you shift your
posture some, right? That’s one way that you
deal with your pain. What things have you found to
be most helpful for your pain? CINDY STEINBERG: So what I do
is a combination of things. I use medication. And I limit the amount
of time I’m upright. Literally I’m up an hour. And I lie down for 25 minutes. And that helps me control the
level of pain I experience. I do an exercise program,
a water-based program, and a land-based
exercise program. And combining all
those things enables me to function while still
living with pain, but having it much reduced. DAVID FREEMAN: OK. I think now Lisa’s got
some questions for us. LISA MIROWITZ: I do. Thanks a lot, David. We do have a lot of
questions coming in. This is one from our live chat. What advice do your experts
have for those chronic pain patients whose doctors
will no longer provide opioid treatment? Many have been on
these treatments successfully for 10 to 15
years, and are just cut off with a final 30-day supply. If they cannot
find a new doctor, should they go to the ER? Methadone clinics? What should they do? These people are lost in pain,
and don’t know where to turn. DAVID FREEMAN: Thinking of
Anna Louise, and also you. Who wants to weigh
in on that question? ANNE LOUISE OAKLANDER:
Well, I can weigh in on it from the perspective
of provider. I think you can weigh in on
it from other perspectives as well. But as a physician, I hear this
story from some of my patients. And I think it’s tragic. And it’s just really
not called for. In many cases the patients
are very stable people who have been using their
medications stably, sometimes for decades. And what I have
advised patients to do is if they’re not able
to find another provider, that they contact their state
Board of Medical Registration and let them know that this has
been done so that the board can look into it and make
sure that it’s not part of a larger problem
with that particular medical practice. And the board may be
able to help direct them to more suitable providers. DAVID FREEMAN: Do
you want to weigh in? CINDY STEINBERG: Yeah. Sure. I mean, that is a huge
problem right now. And the advocacy groups are
hearing from many people now who are not only not able
to get the opioid medication that they need,
but doctors are not wanting to treat people
with chronic pain. We’ve even had a nurse on
the board of Mass PI text us a picture in a doctor’s
office in Springfield that said we no longer
treat chronic pain patients. Literally, people with
pain are being turned away. And doctors are so fearful. Why is that? Because lawmakers,
unfortunately policymakers, have had this knee-jerk
reaction and said, oh my God. All opioids are bad. Therefore, we have
to do everything we can to limit their use
down to almost nothing. And so now doctors are so
afraid to prescribe that they don’t want to prescribe. And they don’t want to
see chronic pain patients. It’s a huge problem. And I think the
pendulum has swung too far in the other
direction right now. ANNE LOUISE
OAKLANDER: And I think we also have to mention
that a lot of this is prompted not so much by
that individual patient, but by that provider’s fear
of being sued, whether– CINDY STEINBERG: Or
brought before the board. ANNE LOUISE OAKLANDER: Or
brought before the board. CINDY STEINBERG: I mean,
right now in Massachusetts, in the bill that we’ve
just recently had– and it will give you a sense
of why doctors feel this way– is that lawmakers now have
written into the law now that passed in March that every
doctor’s amount of prescribing is going to be monitored by the
Department of Public Health. And anyone who is above
the mean or median of their kind of
practice group is going to get a letter
from the medical board about their prescribing. And so as a doctor and
thinking, oh my God, I’m going to get a letter
from the medical board. I too as a doctor would be
afraid to prescribe anymore. And that is law now
in Massachusetts. LISA MIROWITZ: Thank
you for addressing this, because we have had a number of
questions about this as well. So thank you. Shall I take another one? This is from Facebook. Can the panel talk about
chronic pain induced by emotional trauma rather
than by physical trauma as the underlying trigger. We have had a couple of
questions about that. So I wanted to ask. ANNE LOUISE OAKLANDER: I would
say as a neuroscientist there is an emerging literature
about the effects of emotional
trauma, particularly in the young, in children, or
in many cases these are animal experiments in young animals. And there is evidence that
some of these early traumas can indeed cause
changes in the way the nervous system develops. I don’t think that this really
has practical applications yet in terms of treating the
person on the street. But nonetheless, scientists
are beginning to pay attention. And Linda, you might have a
comment about that as well. LINDA PORTER: Yeah. I think research
is really beginning to understand that there’s a
certain period in early life where emotional trauma
or physical trauma can make people more susceptible
to chronic pain conditions later in life. And so as we move forward
with the Federal Pain Research Strategy, which Cindy
mentioned, that’s an effort to put together
a long-term strategy of how we direct pain research to
sort of improve the agenda and improve the outcome of the
research dollars that we spend. And a lot of the
conversations there have focused on the need for
more research in that area, because there does appear to be
perhaps a certain age at which there is a susceptibility
that is stronger if there’s some kind of early
trauma to lead to chronic pain later in life. And so even beginning to
identify that window of time where early interventions
post that kind of trauma could help prevent
later chronic pain. Those are all big questions
that are looming out there now. And clearly, things
that are going to rise to the research
priorities that are recommended for the
federal government to focus their research dollars
on in the upcoming future. Important area. DAVID FREEMAN: Would the
intervention possibly be therapy at that point? What sorts of
interventions might there be if there’s an injury or
something at an early age? LINDA PORTER: Therapy would
certainly be one of them. Especially if these individuals
could be identified as in need. There could be if there is
an initial physical pain insult resulting
from the trauma, then there could be also
kinds of interventions like cognitive
behavioral therapy, or exercise, rehab therapies
that would associate more with the pain condition. But clearly, this
psychological therapy is likely to be an
important component to that. DAVID FREEMAN: Did
you want to add– VAUGHAN REES: I would just
add something to that. I think looking a
little more broadly among psychiatric
centers and trauma alone, other co-morbid
psychiatric problems can also enhance the
perception of pain, including anxiety problems,
problems with depression. And it is among patients
with those sorts of concerns that we see increased risk
for development or problems of substance use. And so that represents a
particularly high-risk group. And I’m not clear
on the data on this. But I would wonder also whether
those with a history of trauma might also be at
risk of problems of opioid-related substance use. And for which alternative
types of interventions are recommended. DAVID FREEMAN: Do you
have another question? LISA MIROWITZ: We’re
running out of time. We have a lot of questions. And you all can go on
our chat and see those. I just am wondering if anyone
from the studio has a question. AUDIENCE: Yes. I’m wondering if you
could speak a little bit to the intersection of mental
illness and chronic pain. And it was mentioned
that chronic pain can cause mental illness. How about the management
of the mental illness aspect of chronic pain and
the intersection between that and problems of addiction? VAUGHAN REES: That’s a
very important question. I think that there
is a relationship between psychiatric symptoms
and perception of pain. As I mentioned a moment ago,
that there is also clearly a link between the experience
of symptoms of anxiety and depressive
disorders and increased likelihood of substance use. So I think this represents an
important area particularly that suggests vulnerability
for problems of substance use, as well as for increased
chronic pain problems. And we need to engage in
efforts to understand that more effectively to manage
problems for those patients better clinically. DAVID FREEMAN: Cindy, did you– CINDY STEINBERG: Yeah. I do want to comment on that. I’m glad you brought that up. It’s a good point. And if you think
about what I describe when I talk about the
experience of living with pain, if you can picture yourself
living with this kind of pain 24/7 and what it
does to your life, I’ve had people in my pain group
whose spouses have left them. They can’t take care
of their children. They can’t make social plans. And so your world gets
smaller and smaller. And oftentimes people
become incredibly isolated. And the combination of that
often can lead to depression. And so I encourage people
that are experiencing pain to get counseling, because it
affects so many other aspects of your life. I mean, I’ll never forget
this really amazing story that Phil Pizzo, who is the
former dean of Stanford Medical School, the chair of
the IOM committee, he himself, after the report
was released about pain experienced pain himself. A doctor. And he ultimately
had such severe pain. He described the
fact that he was Dean of Stanford
Medical School and he wasn’t leaving his house. And he became so depressed,
clinically depressed, until he managed to
push for a diagnosis like Anne Louise
had talked about, and ultimately got
help for his pain. But I mean, imagine something
like that and chronic pain doing that to them. So I think it’s a really
important point that people should seek counseling. ANNE LOUISE OAKLANDER:
And also I think– go ahead, Linda. LINDA PORTER: Very
briefly here too. We also know that some of
the brain circuitry that’s involved in pain and
depression and anxiety and the reward circuitry
that’s related to depression are overlapping in a
number of different areas. And we’re beginning
to understand that. And I think that’ll help as
far as treatment approaches. Anne Louise? ANNE LOUISE OAKLANDER:
Well, I was just going to say at a
practical level, if I see that I have a patient
with substantial chronic pain, I always try to ask them. I say, how are you
coping with this? If I were you, I
would be depressed. How are you doing? And I emphasize
that it’s not that I think their depression is the
cause of their chronic pain. But I say, look, we may not have
great treatments for your pain. But there’s quite reasonable
treatments for depression out there. So why don’t we at least treat
that part of your difficulty that we have effective
treatments for. And I would encourage
patients as well not to conceal this
from their physicians, but to bring it up very openly. There is treatment. DAVID FREEMAN: So we’re
running out of time. But really quickly,
I think we have time. I wonder if each of you could
offer a policy takeaway. And my understanding is
that these will be collected and distributed to policy– some influencers specifically. So do you want to start, Cindy. What do you think? What’s the policy
takeaway for you, quickly. CINDY STEINBERG: As a person
who lives in the policy world, I can think of a lot of them. But my number one
thing, I guess, would say to dramatically
increase the pain research budget, because we need to
find more effective treatment options. And I think Anne Louise would
probably agree with that. Just one thing I’d
say more quickly also is that in terms of
lawmakers, particularly at the state level, I’d
like them to understand that people with pain
need to be at the table when you’re making
decisions, and that to try to find balanced
approaches that don’t harm one group while helping another. VAUGHAN REES: I
would suggest that we need to reduce the prevalence
of opioid analgesic medications across communities
in the United States, and replace them
with better options. Of course, these
medications need to continue to be made
available for patients with chronic pain problems. But we need to do a better job
of prescribing them, monitoring their prescription,
screening patients that have a potential for
abusing such medications or being involved in the
diversion of those medications to the streets of the
communities from where they come from. So we need to
strike that balance. But overwhelmingly, we
need to reduce our reliance on opioid medications, reduce
the prevalence of their use across communities, and seek
better, safer alternatives. DAVID FREEMAN: Anne Louise. ANNE LOUISE OAKLANDER:
And I’m going to say something odd for a
clinician and a researcher. But I think we need to do better
with getting the message out to other health care
providers and to the public about the discoveries
in many cases that have already been made. An opportunity like this to
speak to a large audience is terrific. Far more people will watch
this than read my papers in some persnickety
medical journal. So let’s find ways to
disseminate the research that the NIH is funding, and get
it out to help patients faster, quicker, better. DAVID FREEMAN: And
Linda, how about you? LINDA PORTER: All of
the above, obviously. What I would add to that is
I think what we need to do is really start to move
towards a payment system that covers multi-disciplinary care
for people with chronic pain, and that the public payers
can take the lead with that. And as we understand
better how that benefits both the payer, and especially
the outcomes for the patients to start to move
in that direction. DAVID FREEMAN: OK. Well, I think that
about ends it, Linda. Thank you very much. Anne Louise, thank you. Vaughn, Cindy,
thank you very much. And I’ll encourage
the people who are watching online that
the conversation continues on the forum website. ForumHSPH.org. So thank you all very much. Thank all for the panelists. Thank you very much. Bye bye. [APPLAUSE]