PMTF Public Meeting #3 Day 1 Part 5: Review of Task Force Progress – Vote on Task Force Final Report

PMTF Public Meeting #3 Day 1 Part 5: Review of Task Force Progress – Vote on Task Force Final Report


>>Vanila Singh: In the interim, before we
get to hear from our patients, just for the public’s sake and, really, overall, for our
sake, our membership, we wanted to do a quick review of our task force efforts. And so, we have our intro slide here and we’ll
go to the next slide. And, first and foremost, we just wanted to
thank and let everyone know that the task force feels honored and privileged to have
heard from so many noteworthy individuals across the pain management community over
the course of this past year, in addition to the public comments and the patient testimonials
that were received. At this time, I wanted to personally thank
many of those dignitaries including Sec. Azar, who had come to our inaugural meeting;
Adm. Brett Giroir, assistant secretary for Health, who we heard from in the video message,
he’d been at both of our prior meetings; Dr. Charmaine Yoest, who was associate director
at the Office of National Drug Control Policy; Dr. Nora Volkow, who was director of NIH’s
NIDA institute; Dr. Carolyn Clancy, MD, deputy undersecretary for Health for Organizational
Excellence from the Veterans Administration; Demetrios, who was the principal deputary
[sic] administrator of CMS; Dr. Rahul Gupta, who was the former state commissioner at West
Virginia and gave us a great insight and understanding of what was going on, really, at ground zero;
Dr. Asokumar Buvanendran, who we recognized earlier today as chair of committee on Pain,
American Society of Anesthesiologists; he gave us a talk that day of the first inaugural
meeting. FDA Commissioner Dr. Scott Gottlieb had come
to our inaugural meeting; our U.S. representative Pete Sessions from Texas; U.S. Representative
Dr. Michael Burgess; Dr. Paul R. Cordts, MD; he was the deputy assistant director of Medical
Affairs at the Defense Health Agency and gave us a great background and talk; Rear Adm.
Michael Toedt, MD, chief medical officer of Indian Health Services from the U.S. Department
of Health and Human Services, he was at our second public meeting; Dr. Walter Koroshetz,
MD from the National Institute of Neurological Disorders and Strokes from the NIH, he was
at our second public meeting, and we really appreciated them coming out here; and U.S.
Sen. Bill Cassidy from Louisiana who’s a physician; Dr. Lucille Beck, PHD Deputy Chief Patient
Care Services from the Veterans Health Administration; Vice Adm. Jerome Adams, MD, MPH, he came to
both of our meetings, public health one and two; and then Dr. Shari Ling, who you all
met with today, deputy chief medical officer at CMS. And to so many others. To all those who made time to either call
in or come in person to provide all of their remarks, their personal stories, the distinguished
lectureships. We really appreciate all of that effort, and
we know it means a lot to all of you. It certainly meant a lot to us. I think the task force I can say has seen
much. We’ve learned from each other and we’ve learned,
more important than anyone, from the public and the patients. And that has meant a lot. Slide 61. I’m going to just quickly, actually, go through,
kind of, just to review, really for the public’s sake, a comparison of the 90-Day Public Comment
Period versus our Public Comment Period for Period one and two, just to give people a
sense of where we went and where we had come from. The bar graph in blue is the 90-Day Public
Comment Period that was in response to our Draft Report. And that was pretty close to the public comment
periods where people were commenting in general to share their experiences. So, there wasn’t something necessarily that
they were reacting to in those first two meetings. And you can see, really, by and far the biggest
issues were treatment access, or access to adequate treatment, chronic pain, certainly
first two periods we saw a lot about decreased functionality, or a loss of function. Both periods, really, it was conflation with
addiction, people’s concerns that they were being mistaken as folks with opioid use disorder
rather than having legitimate pain treatment. Insurance issues actually went up in our last
90-Day Public Comment Period, likely in response, again, to the Draft Report. The review of CDC guidelines got a lot of
attention, a little bit more in the 90-Day Public Comment Period. Provider disincentive, stigma, and suicide
all remained as part and parcel of — categorically at a very high level. And that was something that we had actually
determined by looking at our public comment data and, in essence, where we could, we took
that data and used some machine learning to give us, kind of, a broader, greater view. But to really make sure that our folks, our
patients, the commenters, the public at large knows that we had manually reviewed each and
every one of these. Had a, you know, a set of eyes looked at each
and every comment that came our way, to the best of our ability, which is a huge task
given that it was a total of 9,000 public comments. And the staff really worked hard at ensuring
that that was the case. Where allowed, the public comments were considered
and, as applicable, incorporated into the final report. We’d like to acknowledge its receipt of and
gratitude for the critical feedback the Draft Report received, both those who were for and
those who shed a different perspective. And especially the public’s comments pertaining
to Opioid Use Disorder and addiction. Given this time of crisis, we want to be very
sensitive and let folks know that though our focus is on acute and chronic pain, the same
issues of stigma and compassionate scientific care is really the basis of what we would
like to see for those folks who are suffering from addiction. And, let’s see. We have a next slide. Oh, here we go. Okay. So, this slide kind of breaks down the categories
that we saw and, really, in the 90-Day Public Comment Period you can see that 65 percent
of people noted instances of chronic pain, 39 percent, again, with decreased functionality,
13 percent, mentioned the consideration of suicide or suicidality, 39 percent of people
were concerned about being viewed as addicts, 16 percent of people encountered or noted
significant encounters with stigma, and then 87 percent of people overall, again, were
noting the barriers to treatment. Which, kind of, spans many of these categories
when you look at it. Whether it is stigma, whether it is insurance,
whether it is, you know, the unintended consequences of being force tapered or abandoned or not
being able to find a provider who could take care of them and their primary pain issues. Next slide. And then we wanted to thank all of our stakeholders. This list here on the left side is, really,
kind of a broader view of the practice and provider groups, the patient advocacy groups,
the professional society, hospital and health systems, academic institutions, the accreditation
councils, the healthcare insurance companies, the pharmaceutical companies, the medical
device companies, poison centers, state and local communities, cancer networks, veteran
service groups, special populations, and organizations representing individuals of all demographics. And few of these organizations — you saw
the list over lunch. That was, like, the entirety of, like, almost
200 organizations of all various backgrounds. Here’s some that were — most notably came
out with some, you know, support but also great critical suggestions: the AMA, Human
Rights Watch, Association of American Physicians and Surgeons, the American Association of
Neurological Surgeons, the American Nurses Association, the Dental Association, the American
Academy of Pain Medicine, the American Association of Orthopedic Surgeons, the American Society
of Interventional Pain Physicians, the American Society of Anesthesiologists, the American
Association of Nurse Anesthetists, the American Academy of Hospice and Palliative Medicine,
the Accreditation Council for Continuing Medical Education, the American Pharmacists Association,
the American Psychological Association, the American Academy of Physician Assistants,
the American Society of Acupuncture, and the National Association of Social Workers. Next slide. So, what I wanted to tell you is that’s just,
like, a little — I think 160 plus organizations were telling and stating that this was a very
timely broad report that’s time was due. So, here are a couple of slides that we’ll
go through very quickly because of time. So, the AMA notes it will — they felt the
Draft Report would not only improve pain care for America’s patients, but also will help
end the nation’s opioid epidemic. The Draft Report provides an in-depth discussion
of the balance needed between medical evidence, policy, and patient compassion alongside the
realities of the nation’s opioid epidemic. And then at the bottom, The AMA commends the
authors for the nearly 450 individual citations buttressing the Draft Report recommendations. This will enable the Draft Report to serve
as an excellent resource for further research and objective discussion of improving pain
care in the United States. Next slide. Just really quickly, Human Rights Watch. We commend the Task Force for this timely
and comprehensive report on the gaps and inconsistencies in acute and chronic pain management. And they note that they commend us for comprehensively
addressing broader issues in chronic pain care, such as lack of condition-specific treatment
algorithms, inconsistent access to care, and inadequate insurance coverage. The AAPS noted, we would like to reiterate
our support for the emphasis that the needs of the individual patients need to remain
at the center of patient care decisions and that actions by third parties interfering
in the patient-physician relationship need to be minimized. Next slide. The American College of Physicians. The Task Force has developed a draft report
that strikes a crucial balance by offering recommendations that seek to end the nation’s
opioid epidemic while recognizing the need to support patient-focused, multidisciplinary,
and multimodal pain management. The Society of Acupuncturists note their 4,000
members. We applaud this document and commend HHS for
presenting such a complete and well-crafted vision. We agree that pain is complex, and they go
on to talk about biopsychosocial model. The Center on Addiction noted that we applaud
the work done in developing these recommendations and are especially appreciative of measures
included to prevent opioid addiction before it begins by increasing the non-opioid therapies
available to patients. And the American College of Obstetrics and
Gynecologists note it as a balanced, evidence-based, and contextualized report, as well as other
comments. Next slide. Consumer Pain Advocacy Task Force note it
as a series of recommendations that are thorough, well-balanced, and easily endorsed by people
with pain and the organizations that represent them. The neurosurgeons note that it supports our
view that reasonable mechanisms can be created to curb inappropriate opioid prescribing practices,
while still preserving access to opioids to those patients who would likely benefit from
them. They want to also recognize the promising
new and existing non-opioid therapies, including devices. Next slide. And then, some of the public comments. One of the patients, as her care — he speaks
about his wife who suffers from Complex regional pain syndrome and as her caregiver, all I
want is for her to be comfortable and not see her suffer. And, he says, “I am not a man of science nor
am I a doctor. I cannot offer you any medical information,
data, statistics, or other facts. All I know is that I love my wife first and
foremost.” And he notes, “Please do not choose a path
that will destroy people’s quality of life. Please be considerate of those who need these
medications and in no way have abused them.” And he emphasizes compassionate and empathetic
care. The second person is a person who has suffered
both ways. He lost his daughter. His daughter completed suicide with opioids
so, yes, something needs to be done, he states. She had oral surgery on her wisdom teeth shortly
before her death and the doctor gave the 40 pills for pain. She only used four pills for pain during the
night and the next day, leaving 36 pills to use later for suicide. I believe instead of making people suffer
with chronic pain without medications, doctors should only prescribe exactly what is needed. My daughter did not need 40 pain pills for
wisdom teeth. It’s insane that the doctor wrote for that
quantity. On the other hand,” he notes — so that’s
his daughter he’s talking about, then he notes his mother “takes three hydrocodone a day
for chronic pain. She cannot walk without this medication. I read yesterday that in 2019 Medicare will
stop paying for her to get her medication. This is life-altering to her quality of life. I don’t think the answer is to regulate the
people who suffer. I hope you can find a solution, so my mom
doesn’t have to suffer and no one has to lose their daughter like I did.” Next slide. The person at topped [phonetic sp] is a disabled
person on Medicare. Significant health issues, notes that the
real focus is on the fear of being targeted, that he’s lost two good pain management physicians
over the years who dropped all their patients, fear that if they have any misstep in their
practice that they could lose their license or worse. “Every time I lose a doctor, I am forced to
start all over again.” And then the second one says, “I used to be
a productive member of society. Now I’m limited to a life mostly in bed, in
the dark, fighting my own health and my own body. I’ve lost 20 pounds and counting. Besides the physical effects from my incurable
disease there also comes many mental issues. I fight every day for my children and for
too many that are lost due to suicide from chronic pain. I had hoped I’d get better, but no. My disease is also known as the ‘suicide disease.’ I’m literally a shell of a person now.” Next slide. “I’m a chronic pain patient of 23 years, been
on opioids for 13 of those years, can’t cook, clean, shop, shower, forget about socializing. I have no life anymore. I am evidence that opiate pain medication
in the right dose does work long term for some patients. And many of my pain support groups and people
are not getting medical care because they are pain patients. So many have their medicine taken away without
their consent. No taper. Just abandoned. We are individuals, we are human beings, we
are Americans. We deserve to be treated by our doctors based
on a plan we agree on.” Final one is a person with multiple disabilities
and also gets into finding practices that — “They lack in both breadth and depth. And insurance does not cover the complementary
treatments that are helpful trigger point release, massage, yoga, tai chi, and nutritional
counseling are among the most useful practices not covered by insurance, largely ignored
by medical practitioners.” Next slide. All right, so that concludes that portion. It gave you a sense of our overview, some
of the comments we’ve heard. Those from, of course, the organizations and,
once again, we were really grateful for everybody who took time to weigh in from all different
perspectives. So, with that, favorite part of the day is
always hearing from these brave folks who have come from all over the nation and I will
just take a moment to introduce them if I have the bios. Do I have the bios? All right, well, so there is something I wanted
to share. I had promised someone that we would — so,
before I introduce the members of our patient panel, I would like to share with you the
story of another patient, Amy Chapman. So, she goes as follows: “My name is Amy Chapman
and I was diagnosed with acute intermittent porphyria in 2007. I’m a known third-generation, diagnosed through
both biochemical and genetic testing. An acute porphyria attack causes debilitating
intractable neurovisceral pain that feels like flaming swords in my abdomen and nerves. My symptoms are triggered by my monthly cycle,
stress and anxiety, or even by a simply cold or allergy. Attacks should be treated with Panhematin,
the only FDA-approved therapy for acute porphyria. Given early in an attack it works quickly
and helps avoid chronic pain issues. This is difficult because hospitals do not
carry this, do not receive a reimbursement, or the doctor does not know how to prescribe
it. While waiting for hemin and also for chronic
pain, we should be treated with safe pain medicine. AIP is a pharmacogenetic disease; unsafe medicines
can trigger or worsen a life-threatening attack. The only safe medicine that touches the extreme
pain of a porphyria attack are opioids. As my example, my first experience being admitted
to the hospital without pain management was horrific. The Panhematin treatment was mishandled and
I was in such dire pain that I dropped to the floor. I literally thought my life would be over
soon. Porphyria is so rare that physicians were
guessing how they could assist me, though I had information with me regarding treatment
and management. My pain continued to escalate, and no pain
management came. On the third day of my hospital stay I was
informed at 6:00 a.m. that I would be discharged without treatment.” But she goes on to say that she was finally
— found a physician who agreed that treatment of glucose and Panhematin with opioids would
benefit her. She was prescribed this. This helped immensely in her recovery. “I only take these drugs when I absolutely
need them to reduce the pain and suffering from an attack. My journey has proven to be a hard life of
pain. I have never abused such drugs, nor have I
ever craved them. I’m devastated that access to opioids as safe
pain medicines has become very difficult for me. I live with intolerable pain. I’m only 44. There are many people across the nation that
are also having this issue.” All right. So, thank you, Amy, for sharing that story. And now it is my honor to introduce the members
of our patient testimonial panel. Right here in front of me we have retired
U.S. Navy Lt. Morgan Lutrell — and I’m going to introduce all of them and then they will
all share their own stories. Morgan is a hero currently working at the
Department of Energy as senior advisor to the Secretary on Public and Private Partnerships,
on the large-scale data aggregation and analytics focused on addiction, traumatic brain injury,
and suicide. Ms. Sarah Whitlock. Please raise your hand, Sarah, if you can
there. Thank you. Sarah’s a licensed professional counselor
specializing in providing compassionate, effective, and dedicated case management and counseling
services to children, adolescents, families, and adults. Sarah has more than seven years of experience
as a mental health professional and emphasizes a pro-active, positive approach rooted in
the understanding of individual patient backgrounds, needs, and circumstances. She holds a Master of Arts in Clinical Psychology
from the University of Houston-Clear Lake and a Bachelor of Science in Psychology from
Texas A&M. Ms. Amy Partridge. Amy, if could raise your hand. Thank you. Amy worked in the insurance industry for nearly
two decades before becoming disabled with adhesive arachnoiditis in February of 2016. Prior to her departure she was the director
of Operations and Implementation for a large health insurance company and was responsible
for assisting national health system clients with launching their own health plans and
managing their third party administrative services. Amy lives in Pittsburgh, Pennsylvania with
her husband and two daughters, along with their third and largest child, a 140-pound
English Mastiff. I hope I said that right. Mr. Mark Zobrosky. Mark, you could raise your hand. Thank you. Mark is the father of four grown daughters
and 18 grandchildren. He and his wife Diane will celebrate their
45th anniversary this coming November — oh, that reminds me. I have to say happy anniversary to my parents
today. Yes. It’s their 51st. I already blew that. I thought I was going to do that earlier. Okay. Prior to enduring four major back surgeries,
Mark was the senior executive of three successful, nationwide retail organizations. One, a multi-billion dollar bottom line turnaround;
the second, a rapid growth chain of deep discount bookstores that grew from six stores to over
300 locations in four years; and the third, an initial start-up with 26 locations that
allowed the organization to purchase a similar retailing acquisition of an over 200 location
retail chain. Over the past three years, Mark has sought
to shine a spotlight on the issues long-term intractable pain patients suffer through advocacy
with legislators, government agencies, and various media outlets. And then Ms. Katie Golden. Katie, raise your hand please. Thank you. Katie is a professional patient, writer, and
advocate for those living with chronic migraine disease and the unrelenting pain that comes
with it. The migraine thief stole her career in finance
at age 30 when her episodic migraine attacks became chronic. She is the director of Patient Relations for
CHAMP, which is the Coalition for Headache and Migraine Patients, a writer for Migraine.com,
contributing editor for The Invisible Project magazine, and Migraine Advocacy Liaison for
the U.S. Pain Foundation. In her quest to never let your pain go to
waste, Katie is passionate about being a voice for those living with chronic conditions. So, that’s all of them and we will first hear
from Lieutenant Morgan Lutrell.>>Morgan Lutrell: Good afternoon. I don’t envy the complexities of the task
presented to each and every one of you, so God bless you in your journey, and I hope
to God you do great things. In 2009, I was involved in an accident where
I broke my back in six places, thoracic area down into the lumbar. I destroyed my coccyx and my sacrum and lost
— and damaged or destroyed all the nerves from my waist down. Let’s see. I was in the hospital for about 15 days in
a body cast, and then I was taken out of the hospital by some of my teammates and my family
members who — I didn’t really want to stay in there that long, so — starting my stopwatch,
so we have five minutes. The complexity of my injuries was from the
neck down as well as the neck up, so I had a lot of dealings. And the problems I was having weren’t really
that substantial, that I knew of, because I was on so many narcotics initially when
I was at the hospital, and then afterwards. I put the number at around five different
opioids. Vicodin, Percocet, I did the Fentanyl round
and everything and, luckily for me, I lived out in the country and ran out and went cold
turkey. And was also, come to find out, well, allergic
to opioids. I had diaphragmic seizures. So, my addiction lasted — was short-lived,
thank God, and I have never taken anything again since 2009. I’m on a Tylenol or Ibuprofen regiment. Once I was able to function — post-amnestic
for about two months, and luckily I had someone that was with me the entire time kind of keeping
close notes and giving me a read-in after I kind of had a moment of clarity, and could
understand where and what had happened and where I needed to go from there. The issues were, again, top to bottom, neck
up and neck down. And, in my opinion, the neck down problem
was easy once I was out of the cast. I immediately got into — and the community
that I worked in was very — they were very appropriate in handling the problems acutely,
which mitigated my chronic. I was lucky on that. Did it fix the entire problem? No, it did not. I did my due diligence because there came
a point in time where I understood that it wasn’t the ability for the community that
I worked in to handle every injury that I had. So, I started to travel the country on my
own dime and find each and every one of you. Unfortunately, I never landed in you all’s
specific facilities, but you get the picture. In my opinion, dealing with — and I’m not
saying that I don’t have chronic pain now, I just — pain is relative to me. I could either succumb to the opioids — and
I’m not saying they’re not necessary. Absolutely. And I would give anything if it wasn’t the
opioids and there was something else out there that could mitigate these wonderful people’s
pain and not give them the ride and the addiction problems that they are suffering from. But I traveled down the holistic path as best
I could and learned and taught myself that, hey, I’m going to have to suffer for the rest
of my life. This is my new baseline. So, day to day it’s different for me. I don’t do anything to aggregate my pain. I’ve had ablations as best I can for the lower
areas. Have not cut on the thoracic area. That’s a problem that gives me the most — I
also damaged my spinal cord when the T12 fracture happened. So, I have degenerative back disease as well
and, you know, what does the long-term look like? Wheelchair bound? That’s okay because I’m living life every
day to the fullest now. It’s an — I wanted to get this out. It’s important for me to say that I don’t
think I could handle what I’m dealing with now if I hadn’t focused in on the cognitive
rehabilitation combined with the physical fitness modalities that I received. It’s not like I could take my head off at
night and put it on the bedside table. These are connected, and they’re not interchangeable. I think that I spiraled out of control eventually
with my pain because I wasn’t focusing in on kind of the mental aspect of what it’s
going to take to rehabilitate myself. When I hit a certain modality at a certain
facility and it didn’t help, I felt like I was kind of being outcasted. Because I expected a certain facility that
had a specific treatment for back injury to work. And if one didn’t, I considered myself a failure
or a loss. And that’s just sheerly not the case. If I travel to group A and fail, I have the
rest of you to visit. And I think that’s lost on the American public. I think they’re looking for all of you. Because, in my opinion, it takes all of the
specialties — it stems — and, I’ve done my research. And I understand that people will hang their
hat on certain modalities and say, this is the end. This is the end all, be all. This will fix you. And, you know, if hyperbaric therapy didn’t
work for me that doesn’t mean it won’t work for this young lady right here. So, why negate it? I think that we work in silos quite a bit,
and if it hadn’t been for me breaking through those silos and finding the answers on my
own I wouldn’t be 100 percent. Now, 100 percent is my baseline. Am I as I was when I was 24? Absolutely not. But it’s the way I live my life today. And if anybody ever comes across a doctor
that’s good at cutting on a thoracic area I’ll be excited to go in there and do that,
but up until to date I haven’t heard any of that, so I just live with what I have to live
with and I function appropriately. There’s five minutes and six seconds. Thank you. I broke the ice, so be brave.>>Vanila Singh: All right, Sarah.>>Sarah Whitlock: Good afternoon, everyone. I have a title for mine. Might be a little cheesy, but it’s my journey,
know pain, know gain, like K-N-O-W. And that really is close to my heart, and
I’m going to tell you why. Like many in this room, I’ve had the privilege
of experiencing — sorry, I get emotional sometimes — numerous victories and challenges. Moments I would not have trade, even if I
had the option to bypass adversity. I cope with the life-altering issues of severe
spastic cerebral palsy. Hello. Okay? And also, severe ileocolonic Crohn’s disease. And so, with each issue that I have, I have,
you know, the muscle pain and I can’t perform basic daily living activities without full
assistances at times. I have numerous medical procedures and excruciating
GI pain all the time. And each issue that I deal with affects me
in unique ways every single day. Obviously, my experiences with chronic and
acute pain have been very difficult, especially when my doctors strive to implement proactive
treatment over time as my needs change. Continuity of care within the process, providing
targeted pain management, is vital for individuals in need of this specialty. Experiences that have served me well include
voicing my desire continuously. I felt being a key participant in my treatment
plan, with the possibility of transitioning off opioids at the appropriate time and honestly
to date I can say I’m on the lowest dose that I’ve ever been on, which is huge for me. And additionally, exploring possible alternative
methods pertaining to pain management is key. Some modalities might include, but are certainly
not limited to, physical therapy, meditation, tailored psychotherapy, and support groups
for individuals coping with similar issues. Number two, facilitating an open, ongoing
dialogue with my entire treatment team when necessary. That means not being afraid to be the squeaky
wheel, and I’m not. I’m not. Life is too short to be shy about such things. And number three, being encouraged to explore
educational materials about acute versus chronic pain and appropriate treatment options provided
by the pain management physician and the care team as well. Collaboration is key. Continuity care is key. That has become a buzzword and was a long
time ago. Although, my difficulty with pain has improved
immensely, I battle and triumph alongside millions of Americans that face similar and
more severe issues every moment. As a united front, we must continue to educate
ourselves and others about pioneering ways of collaboration through working with physicians
that are passionate about helping patients navigate through the maze of chronic pain
management. And furthermore, dispelling the myth that
the majority of people coping with chronic pain, and acute pain as well, are likely severely
depressed or engaging in drug-seeking behavior. I’m not saying that those issues do not exist
because they are very real, but there are many of us who don’t experience those things. Through unyielding resiliency of grace as
well as the generosity of my loving family, friends, and fantastic medical care team,
I lead a very successful and fulfilling life. And, you know, I don’t know about you guys,
but I want that for everybody who has to deal with chronic and acute pain, as well as their
families because it’s not just them who are affected. It is every one of us. That is why collaboration and support are
so necessary. We’ve got to continue to come together and
I just have to reiterate, it is such an honor and a privilege to be here. Thank you. [applause]>>Vanila Singh: Thank you. I just want to note, Sarah, I know it was
not easy for you to actually come here physically and that you were determined and she really
was thoughtful and wanted to represent all those with disabilities well and those with
chronic pain, so thank you.>>Sarah Whitlock: Can I say this real quick,
my brother and sister are here and it would not have been possible without them for me
to be able to come and do this, so. [applause]>>Vanila Singh: Let’s see, it’s Mark, Katie,
Amy. Katie, you want to go ahead?>>Katie Golden: Yes, sure.>>Vanila Singh: Thank you please.>>Katie Golden: First, I want to thank everybody
here. I have chronic migraine headaches, and the
lights earlier were a lot brighter and that is a huge trigger for me. And so, made accommodations for me in order
for me to be able to do this today. So, thank you. This might seem simple to someone else, but
it can be very — it affects my life, so. So, if you saw me walk down the street today
it probably would never cross your mind that there’s anything physically or mentally or
medically wrong with me. But I’m what chronic pain looks like. Morgan is what chronic pain looks like. Cindy Steinberg is what chronic pain looks
like. Sarah, Amy, and Mark, we are all what chronic
pain looks like. It doesn’t discriminate. It doesn’t care how old you are. It doesn’t care what your background is or
how much money you have in your pocket or what color your skin is or where you were
born. In order to participate here today, I needed
to take a nap after I took a shower. It was exhausting. I couldn’t have any other obligations today. Tonight, I’ll crash, and it will be very worth
it. It may take me a few days to recover, but
the opportunity to speak for other patients was really, really important. I have an invisible illness, chronic migraine. I have not had a pain free moment in eight
years. Migraine is the second highest cause of global
disability. Right before my 30th birthday, I had a migraine
with an aura that never stopped. I was getting my master’s degree at Georgetown
University, and I was the youngest vice president in my community bank, working in commercial
real estate financing. And chronic pain took that from me. My life was turned upside down in the prime
of my life. Migraine is a genetic, bio-neurological disease
that affects the entire body. It takes me three times as long to perform
a task. Cognitive impairment restricts my activities. Short-term memory loss has increased. I can walk into a room with such purpose and
in those three seconds, I totally forget why I needed to be there. I’m only 38. I have to carry a notebook with me at all
times. It’s my security blanket because if I don’t
write it down, I won’t remember. When I’m away from home I have all my medications
with me at all times and I have an exit strategy. If the pain becomes so unbearable, I have
an exit strategy to know where to go and what I’m going to do so that I can get the relief
that I need. I have a very small radius around where I
live that I’m comfortable in exploring myself, otherwise I need help. Head pain is only one symptom of my disease. And I’m not alone, there are 50 million Americans
who live with chronic pain of which 20 million have high impact chronic pain, and that’s
me. I’ve turned to patient advocacy and writing
to make sure that my pain does not go to waste. I speak for all of my fellow pain warriors,
when I say we are declaring independence from pain. We are exercising our rights that all patients
should be treated equally, no matter where they live, no matter what they look like,
and no matter how much money we have. We all deserve equal and accessible treatment. Everyone experiences and copes and reacts
to their own unique set of medical intruders and the multiple co-morbidities that lie within. There is no one size fits all to this complex
issue of pain. In our country, there is an opioid crisis
and there is a pain crisis. And you can’t address one without addressing
the other. Opioids were part of my pain management plan. I used them responsibly. For six years, I never increased my dose. It was a tool that I had in my toolbox to
use. I moved across the country and was then met
with access issues and denied use of any opioids. Further taking away just one other thing that
I could use to manage my pain. On the flip side I have also seen how opioid
use can create — I lost a friend. I lost a friend to an overdose. Started with opioids and then turned to heroin. I don’t want that for anybody’s family, but
there are people who need opioids in order to live life, we have to find the right balance. No one wants to be dependent on any medication
that could potentially have serious side effects and life threatening repercussions. Funding research and new treatments were needed
years ago. If pain patients were taken seriously, then
maybe my friend’s daughter wouldn’t have taken her life at age 22. She had just been turned away by her fourth
specialist who said he couldn’t help her. He said that she needed an entire team of
doctors to treat her. Yeah, of course she did. She needed coordinated care. Health care professionals have to work together
to treat the whole patient. Why isn’t this the standard of care? No one should be turned away or forced off
medications, including opioids, that provide relief from the prison of pain they live with
daily without being given effective alternatives and support. It can take decades for research and development,
clinical trials, FDA approval, and for new medications to get into the hands of patients. While we wait for this to happen, we need
access to alternative treatments, complementary alternative treatments now. Acupuncture, cognitive behavioral therapy,
non-invasive medical devices, yoga, biofeedback therapy these are a handful of methods that
can help someone manage their health, yet the majority of insurance companies don’t
cover these treatments. What insurance companies fail to realize is
that by covering multi-modal approaches it will lead to better patient outcomes. Less ER visits, less medications, and less
hospitalizations. Over a person’s lifetime, covering these alternatives
will be less costly in the long term. Covering these treatments should be the standard
of care. I’m almost finished, thank you. Today, someone with HIV can live a fulfilled
life. Hepatitis C can be cured. My friend, David, who was diagnosed with pancreatic
cancer weeks after he found out that his wife was pregnant with twins, he’s going to be
able to watch them grow up. These are incredible advances in medicine
in the past 20 years. They’re remarkable, yet when it comes to pain
management, we’re in the stone ages. Why are our lives not given the same attention
and priority? Finally, we have been given, finally, we have
been given a forum to be heard and offered a glimpse of hope. A glimmer of hope that through this Pain Task
Force, changes will begin to happen. I request that the final report will include
oversight and accountability with incremental, measurable goals that are reported back to
this committee and to those living with chronic pain. All of the hard work that everyone here has
been doing, it will all be for naught if these practices aren’t implemented. So as Lin-Manuel Miranda wrote in the musical,
Hamilton, “This is not a moment, it’s a movement.” And it’s time to stop talking and start doing. I’m sorry I took too long but thank you very
much. [applause]>>Vanila Singh: That was beautiful. Thank you so much for that. Mark or Amy? Amy.>>Amy Partridge: Good afternoon everyone,
thank you Dr. Singh, and thank you to all the members of the Task Force, you are a multi-disciplinary
group, quite a powerhouse. We appreciate all of the time and effort you’ve
put into all of the documentation these recommendations. Thank you. As Dr. Singh mentioned, I spent almost two
decades in the health insurance industry, teaching other health systems how to launch
a health plan. I’m telling you this because I was an expert
in navigating the system, and I still couldn’t find care. I was no history, sorry, my medical history,
I was no stranger to pain. I lived with chronic low back pain. That was manageable with a couple of Bufferin
and, you know, limiting activity, resting. That was chronic pain to me. It was minor, it was a part of my life, and
I just adjusted, and I lived with it. I ended up needing two spinal surgeries and
I had a total of six epidural steroid injections. The sixth was in the fall of 2015 and that
sort of started the downward spiral, where my functioning was decreasing, and my pain
was increasing. By January, we went to Disney and I needed
a scooter because I couldn’t walk around the park. Sorry, and I had to go back to the room a
couple times throughout the day and leave my family in the park because I had to lay
down. By February of 2016, I had to stop working. I just couldn’t stay in the office anymore. I couldn’t even lay down and work from home
because the laptop on my legs just caused too much pain. And when you’re in that much pain, your mind
doesn’t work very well either. So, I saw eight different doctors in about
a six to eight-month span and nobody could tell me what was wrong. Every single doctor had a different opinion. Finally, in May of 2016, I got the answer
that I needed. A final diagnosis and it was adhesive arachnoiditis,
which is permanent, progressive, and incurable. So, now, I had a diagnosis, I needed to find
treatment. I found a pain management physician locally. Now, in all of this time I’m now realizing
this pain is different, this is not just, oh, my back hurts. This is life-altering confine you to a bed
to the point that I moved a daybed into our family room so that I was not isolated in
the upstairs bedroom, I could spend all the time with my family on the same level of the
floor. I couldn’t do housework, couldn’t do grocery
shopping, couldn’t clean, couldn’t cook, so my mom and husband stepped in and took over
raising my two daughters for me who were 10 and 12 at the time. Finally, found the pain management doctor
locally to treat me. I tried so many things. I didn’t want to be on pain medication. I wanted to be on the least amount of medication
possible. I would do anything to get rid of the pain,
amitriptyline, Cymbalta, topiramate; you name it, I tried it. None of it worked. I tried TENS, PENS, P-STIM, where they stick
these little electrodes into your ear and you wear this device behind your ear for a
week. Nothing worked. I’m not a candidate for invasive surgery because
of scar tissue within my spinal cord has already cemented the nerves together. Opioids did help, but they maxed me out at
30 MME a day and said they’d never go any higher. So, I had to pick and choose a couple of hours
every day, where I would have enough medication just to take the edge off that I could stand
long enough to make a couple of sandwiches. In the fall of 2016, I finally found some
help. A doc on the west coast agreed to see me. I left that first appointment being able to
walk without pain for the first time in a year. I walked without limping for the first time
in a year. And that was because of a shot of Toradol,
it wasn’t because of an opioid. The protocol that I was on at that point in
time, and I’m still on a version of now, includes both non-opioid and opioid therapy. It wouldn’t be possible with just one or the
other; it’s the combination of the two that allow me to sit here today. I couldn’t sit through a meal at the dinner
table before. The stigma is real though. I got home from that appointment so excited
I was finally going to get some relief only to find the pharmacy wouldn’t fill my prescription. Six different pharmacies, I had to drive — I
had a friend drive me around different pharmacies — six different ones refused. And the way that that feels when they speak
to you in a way like, “I’m not filling this.” The stigma is real and it’s dangerous. Last year stigma almost killed me. When an ER physician was so blinded by stigma,
he dismissed the severe abdominal pain, the fever and he missed the perforation in my
colon on a CT scan and tried to send me home. I didn’t think I was ever going to see my
girls again because I didn’t think I was going to live through that experience. And it was only because he had identified
me as someone seeking drugs and thought I was faking. I don’t know how you fake a fever. But I have been on a stable dose for two and
a half years now. My protocol changes a little here and there,
but the stigma is something I cannot emphasize enough. I don’t know if we need a communication plan. I know the National Pain Strategy has something
outlined to deal with it, but we have to find a way to address the stigma because it literally
is life-threatening. So, right now, I’m here with you today. I traveled alone for the first time in years
to get here. I’m able to be a mom to my daughters again. Most days I can leave my house for a few hours
at a time, which was not possible before. I still have bad days, but my flares are minimal
now because I’ve learned to manage my activity. I’ve learned to recognize the triggers and
recognize the symptoms of when I’m going too far. You know, I accept that I’m never going to
work full-time again. All the medication in the world right now
is not going to be able to allow me to sit and stand and be upright eight to 10 hours
a day, every day a week. It’s just not possible. I accept that. What I don’t accept is that there are medications
available to treat patients like me and they are being intentionally withheld. I am here because so many people have been
tapered off or just abruptly stopped their medication. They can’t be here. They are confined to bed like I was for a
good period of time. All medications carry risk, but when you’re
a prisoner in your own home that risk is relative, so I appreciate the individualized patient-centered
care that you’re all advocating for because it’s really what we need. What works for me, doesn’t work for Mark,
might work for Sarah. We are all different. Looking forward, I hope still. I have hope that I will be allowed to continue
these medications. That I’ll be able to do college tours with
my daughters, who are now teenagers, in a few years. And in a few years after that, hopefully,
I’m still on these medications or an alternative if it’s available. I’m willing to try alternatives, but right
now this is what I have, so this is what I do. At some point hopefully shopping for wedding
dresses and even further down the line being an active grandma. I want to do all of these things. I don’t want to be confined to my home or
in bed, and I don’t think anyone here does. So, I know you’re going to vote soon. So, please just remember three things, or
consider these three things, that we’re all individuals and that we all need our providers
to be permitted to provide us with individualized, patient-centered care. For some that’s opioids, for some that’s physical
therapy, for some that’s TENS, we’re all different. Our providers also need some protections too,
they are risking by prescribing to us. They have no incentive to treat us right now,
and every incentive not to treat us. We need to incentivize them to want to treat
us again. And lastly, that a person with one specific
condition, disorder, disease is no more worthy of relief from suffering than a person with
a different condition or disease. We are all human beings that just want to
live our best life. So, thank you all. Thank you.>>Vanila Singh: Thank you, Amy. Thank you so much. I know that’s not easy. So, Mark, you decided to go last.>>Mark Zobrosky: I’ve followed once before
when I was at a CMS event, and I should have known to not do that again. She asked me if I wanted to go first, but
she has a very compelling, honest, truthful story that blesses me and makes me want to
cry at exactly the same time. And putting me up here too, between Sarah
and Amy it’s, you know, a thorn between two roses. This is kind of — I’m losing all the way
around on this thing, but as Dr. Singh said, I had a very successful career. I loved working. I had three very successful ventures in my
life, was making good money, which my wife and four daughters and myself, we found a
way to spend that on a regular basis, but I — we really had a good life, and we were
very thankful for it. But in the process of all that I traveled
about 250,000 miles a year during that time up until I was about 44, 45, and I sustained
some pretty severe back injuries. And I went into a great neurosurgeon in Cincinnati,
Ohio, where I was living at the time. He did a discectomy on my back. It worked really well. He told me, “You can go out and play golf,
and you know, in about six to eight weeks you’re going to be fine.” It healed up real well. I didn’t go out and play golf, I went out
and worked, but and then as I continued to do the 60, 70, 80 hour weeks that I was kind
of used to, I injured it again. And I had it in my mind, well we’ll just do
something else. We’ll either use medication or another surgery
or whatever. And this time they had to do a double lower
fusion on me. And it destroyed my back. The day after I had the surgery, my surgeon
came in, and it was no fault of the surgeons, I mean, they were just doing what they do. But when my doctor, the surgeon came in he
said, “Boy you wore me and my partner out yesterday.” And I said, “Wore you out,” I said, “I feel
like somebody’s been beating on my back with baseball bats,” you know. He said, “Well it was close.” He said, “My partner and I hit on your back
knocking these Ray’s cages into your back for four hours. It took us that long with a rubber mallet,”
and smashing them into my back. And then suddenly I understood, I wasn’t far
off of those baseball bats. But the pain never went away and there was
an extreme amount of nerve damage in my back. I continued to see the surgeon and finally
he said [laughs] a great statement, “We’ve done everything we can for you.” [laughs] I thought, “Yeah, you kind of destroyed
my life.” But he didn’t destroy my life because he said,
“We have a new pain management specialist in Greensboro, North Carolina, and he used
to run the pain management division at Duke University’s teaching hospital. And he’s coming in here into town, and he
wants to treat real-life people instead of teaching. He’s decided he’s going to do that.” And that brought about my meeting with my
friend and a wonderful man, I’ll call him Dr. Mark P. I don’t want to give away his
total name, but Mark sat down with me 20 years ago and said, “I’ve read all of your information. I’ve read everything from the surgeons. We’re going to find something that’s going
to help. I don’t know what it is yet, but we’re going
to find something that’s going to help.” He spent, probably 45 minutes with me. Now, I was probably his 12th patient that
he had because he was just new in town, so he had plenty of time. But he sat down with me and he says, “We’re
going to try everything we need to try to get you as functional as we possibly can.” And so, we went through injections, we went
through additional physical therapy. We tried deep tissue massage. The lady with the deep tissue massage started,
two minutes later she says, “I’m never going to get down into the source behind this. Your back is just, the nerves are too badly
damaged.” And so, she just quit. She says, “Don’t worry, I’m not charging you. I can’t do anything.” And I tried acupuncture, exercise, nerve blocks. We installed a spinal stimulator in my back. That helped. Probably took about 15, 20 percent off of
the pain level. But during that time also, Doctor P, Mark,
said to me, he says, “I would like to try some different pain medications.” And I asked him, I said, “Aren’t you afraid
about, you know, me getting addicted to these,” and he said, “Not if we manage it right, I
don’t think so.” He said, “You may be somebody that has that
problem, but if we manage it right, I don’t think so.” So, he tried two or three different opioids. We landed on one that seemed to work better
than the others. For some reason I never had any goofy feelings
or feeling like I was levitating or anything, I just felt a reduction in pain. And so, we decided on anti-inflammatories
and a particular short-term opioid and a particular long-term opioid. And I haven’t changed any of that medication
— and some muscle relaxants too at various times, but I haven’t changed any of that medication
in nine years. I’ve not had to go up. We did try to taper and it was an agreed upon
thing. He says, “I’d really like to try it, let’s
see how it goes after seeing me for three months, he said, “You just look miserable.” He says, “We’re going back to the level you
were on before. That seemed to work.” And so, I’ve been able to get probably 65
percent relief because of the mix of medications and because of a spinal stimulator that helps
me a lot. And I have been helped by it so much — one
of them died in my back after eight years, and we put a second one in because it’s been
that helpful. But the reason why I’m able to, you know,
function with 65 percent less pain than I had at that time is because I have a physician
who cares about me, who is personally involved in getting the right medication and making
sure there is a care team that’s together. He talked about you need to have family involved
in this. You need to have friends involved in this. The more you have spiritual guidance and people
that are praying with you and sharing with you in this, the better it’s going to be. He never tried to push me into anything in
particular. He just said the spiritual side of it’s important. And so after doing that, I, you know, found
that it improved it. It made my life probably 15 percent better
with the stimulator and probably another 50 with the pain medications. Between the anti-inflammatories, opioids,
and the muscle relaxants, I’ve been able to drive here with my wife, who is also part
of my care team. If I didn’t have her — we’ve been married
45 years this coming November — I got that right, didn’t I? Forty-five years this coming November, and
she has been with me for the past 20 years through all of this. And this isn’t what she signed up for. I mean we agreed when we were married that
I was going to go out. I’d make the money, and she was going to raise
our daughters. And she was going to — you know, we were
going to have life a certain way. Well, it went that way for the first 28 years
of married life. But after that, it went the other direction. But she’s been phenomenal as well. So, I’ve got Dr. Phillips who’s been a wonderful
blessing to me, who continually watches my pain management. I have an independent pharmacist, who I’ve
been with for 20 years, as well, who’s very careful about drug interactions, watching
to make sure that everything’s balanced out. He knows my pain management physician. He knows my GP. And my GP knows my pain management doctor,
and they communicate on a regular basis. So, I’ve really been blessed. Now, I’ve been terrified with all of this
tapering talk because I would say I’m probably up in a higher range of opioids than what
most folks are in. I’m definitely up higher than that 90 MME
group. But as I said, I’ve been stable for the last
nine years. We haven’t gone up. We’ve tried to come down. But we haven’t gone up during that time period. So, I’ve been blessed with a great physician. And that physician is very careful about controls
for his patients. Every single month, Dr. Phillips counts medication. When I get that medication, when I bring it
home, there’s this lady back here that can be tough when she needs to be, and we put
— because we’ve got 18 grandkids, and there are kids going through the house, and friends
going through the house and everything. She’s got a lockbox that has my medication
in it. And it’s locked. I don’t know — I don’t know what the combination
of that lockbox is. So, there isn’t any fear of me going and trying
to take too much because she doles it out. But also my grandkids can’t get into that. We’ve been very proactive on making sure that
that has been a part of our lifestyle as well. So, we have those safeguards at home. My wife has never been tough on me about my
medication or anything. She’s very careful, though. And we’re concerned about those grandkids. Here’s what I’m really worried about right
now. There are a lot of extremely qualified, well-educated,
brilliant people that are on this panel. It’s obvious from me watching this. I kind of sit here and say, “Well, I don’t
know what I’m doing up here talking with all these brilliant people and everything.” But I see that. And I’m really grateful that all of you have
decided to become involved in this. But I see my doctor, Dr. Phillips, who is
also — as I said, he ran the pain management department at Duke University Medical Center. Now, this was 20 years ago, so you have to
count backwards if you’re looking for colleagues. But I see Mark, and I see whenever he prescribes
medication for me, even though it’s been the same medication for the last nine years, every
year my insurance company makes him write a prescription, rewrite a prescription, go
through an appeals process for the same prescription that I’ve been using for nine years.>>Amy Partridge: You have to wrap it up.>>Mark Zobrosky: Sorry?>>Amy Partridge: Wrap up.>>Mark Zobrosky: Okay. So, and there are several other things that
— doctors are just tired. They’ve got a lot of pressure on them. And I think we need to make allowances for
that. We need to make sure — another thing that
happens — and I’m going to wrap up. Amy was so kind to tell me what time it was. But he gets peer reviews. And he’ll call the doctor back. And then he gets a voice mail and never gets
a reply back on the peer review. And I just know that he’s very dedicated to
me and the other hundreds of patients that he has. So, I think we need to look at how we’re treating
physicians that are there on the front lines, too. So, I apologize for taking so long. I thank you, Dr. Singh, for — with all these
brilliant people facilitating a room like this is like herding calves. But you’ve accomplished it. So, I appreciate it. Thank you. [applause]>>Vanila Singh: Thank you so much. Sarah, Mark, Amy, Katie, Morgan, thank you
so much for your stories, your sharing of what I know is so challenging. These are the most inner, most personal aspects
of our lives. And most people, you know, it’s very hard
to admit it to themselves, much less come here on behalf of other patients and say it
live, and tell it like it really is. I know you are making a difference to so many
people. And as I’ve always said, I’ve often felt that
patients do more for me than I do for them because it is very inspiring to hear how people
overcome challenges, get dressed up, come here because they know there’s a greater cause
going on. And in that very light, I actually want to
thank every single one of our members on the Task Force. Dr. Adkinson, Dr. Brandow, LCdr Campos, Jonathan,
Howard, Mac, Halena, Scott, Sharon, Jan, Mike, John, Mary, Linda, John, Mark, Molly, Molly
[laughs]. Bruce, thank you so much for our discussions. Cece, your insight has always been appreciated,
believe it or not. It really has been. Andrea, Dr. Tu, and Sherif. Thank you so much all of you. I think that we — oh, and where is Cindy? Oh, there she is. Sorry, Cindy. Yep. I’m looking for you. And then also, online, we have Dr. Chang who’s
calling in from Asia and has been following our discussion. And we also have Dr. Hagemeier. These are — these are folks who are so dedicated. Dr. Sandbrink from the V.A., Chris Spevak
is our DoD alternative. Peter Staats, who’s just been amazing in our
Subcommittee One meetings.>>Female Speaker: Dan Clauw.>>Vanila Singh: And then Dan Clauw, yes. So, you know, Dan’s had his great insight. But you know, it has been truly an honor to
learn and see how much people care. And you need to see it, not only in your patients
but, especially as a physician, in your colleagues. It continues to inspire. So for that, I’m ever grateful. And I know you all have some great other things
to do, papers to write, patients to see, and that you keep making it here and at all our
subcommittee meetings, means a lot. And it has definitely meant a lot to my hard-working
staff. We have the extraordinary DFO here. Miss Alicia Scott — [applause] — who has — outside of being like wonder
twin towers [laughs], she is such a devoted civil servant that it really gives me faith
in our government. Same with my own staff who are upstairs actually
doing work because they came down and said, “Oh, we have to take care of things.” Monica Stevenson, our EA, Chanya Liv, our
public health advisor; LCDR Rachel Katonak, who’s around here. And then, of course, our Booz team who have
been there, ready, you know, always willing. And then my old Rice fellow, Josh Montgomery,
right over there in that corner. And I say all this because even though we
are having dinner tonight, and we have another day tomorrow, half a day, we are just about
to do something very, very important. So, I want to thank all of our patient-panel
speakers. The Task Force appreciates the honest sharing
of your experiences living with pain. We understand it is not something that’s easy
to do. Now we will vote on the final report prepared
by our Task Force and its three subcommittees. We will always, and have — and have made
note of the technical edits for clarification or wordsmithing to ensure that we’ve got it
right. And I always say perfect is the enemy of good
because, by gosh, I mean yesterday I was should’ve, would’ve, could’ve this section or that section. So, I understand our desire to get it just
right. But I do believe that all of us have come
here for the purposes of advancing care for our patients, which is really people. It’s everyone in society, whether it’s prevention
and wellness, or it’s actually disease management. We have the — we have the full final report
that has been provided to all of you in the binders. As a reminder, per our task force policy,
a majority vote will carry the motion presented. So, at this time, if we have our members online,
our phone call?>>Alicia Scott: Yes.>>Vanila Singh: Yes. At this time, I move that we vote to approve
this final report for release to the federal agencies, Congress, and the public. I would like to open the floor to the task
force members for discussion on the motion before we proceed to a vote. We deliberated the final report extensively
during the subcommittee discussions and presentations. So, we will limit our discussion right now
to 10 minutes. Please, Cece.>>Cecelia Spitznas: I want to say to everybody
that this has been an amazing experience. And your dedication is so impressive. And the patient testimonials and input that
we’ve received has been enormously helpful. And although, I’m not going to be supporting
the report, I feel like we got very, very close and, you know, this is a decision that,
you know, it’s just not consistent with ONDCP, 100 percent. But I think there’s a lot to really be proud
of in the report, nonetheless.>>Vanila Singh: Thank you. John.>>John Prunskis: I want to thank the members
of the committee. I want to thank the patients who are here
today. And for all the patients who gave testimony
today and those who, perhaps, are listening. One thing I want you guys to remember is,
first of all, how much we appreciate that you came out. And I think those of us who are clinical practitioners,
our minds are churning about how we could help you folks. [laughter] And I know — you know what I’m saying — I’m
thinking of one other person that I share a lot of ideas with on patient care, and I
know we’ve got some ideas for all five of you. But what I want to — what I want to also
stress is, we’re calling patients back that we’ve seen a year or two ago. So, there is a comment made like, — don’t,
you know, “Where are the advances in pain?” They’re huge. If you haven’t found and talked to a doctor
in the last year, or one you like, find one because the advances have always improved. In the last year or two, they’ve taken off
like a — I wouldn’t say a rocket, but a much steeper slope. Going back to the Commission, this has been
a fantastic experience. For 25, 30 years, my wife and I who are the
— who was chairman at the University of Chicago pain program for seven years, when we started
the online pain institute, it was me, and her, and one employee. But we always maintained, to diagnose the
source of the pain, when needed, provide opioids. But focus on the diagnosis. The diagnostic techniques have vastly improved
in the last 30 years. But our mantra’s never changed. And so when I was contacted to serve on this
committee because the — our mantra of find the diagnosis, fix the problem, but if you
need to use opioids, use them, finally resonated. And so it’s just been a privilege to bounce
ideas off and get bounced ideas onto me, et cetera, and banged up a little bit. But that was the process. And I thank — I want to thank everyone here
for getting to where — to where we are now. And I am going to support the Task Force’s
findings. Obviously, there’s things that, I voiced my
opinion I would like differently. But overall, I think sometimes perfect is
the enemy of good. And I think this is a substantial document
that, hopefully, has many legs. And in closing, if I can do anything to help
make sure that this document has legs, and even, Cece, you know, I respect your position. But I’d be happy if there’s anything I can
do, or with anybody else, to make sure that this just doesn’t die here. I’m available. Thank you.>>Vanila Singh: Thanks, John. Mark, please. And then Sherif.>>Mark Rosenberg: Yes. I want to voice my support for this report. I think we’ve done an amazing job together. I met a lot of people here. And I know I will be in touch with many of
you for the years to come. It has been an amazing experience. But I want to also give a shout out to Dr.
Singh who pulled us all together, hand-picked us, or at least, was part of that, has given
me an amazing experience in my life. And I want to, personally, thank you for making
this such a wonderful experience. So, from my heart, thank you. [applause]>>Vanila Singh: Thank you, Mark. Sherif.>>Sherif Zaafran: Thank you, Dr. Singh. And you know, this has been an amazing year,
where I think we’ve accomplished quite a bit. One thing I would say is that as much as we
have been brought together to contribute, I think a lot of us have learned a lot, too,
in this whole journey and this whole process. We’ve learned from you guys, from the patients,
the most important stakeholders, I would say, out of this whole process. But also the nuances of how this whole interacts
really was not as necessarily obvious to many of us until we all sat together in one room
here and really talked it through. Just sitting here and hearing the testimonials,
you guys have all highlighted the nuances and the concerns that we all faced in putting
this report together, the unintended consequences, the concerns of tapering, the concerns of
looking at arbitrary numbers that are out there. On the other side of it, making sure that
there are some guardrails and some guidelines, so that patients are protected and you don’t
have the overdose that some of you have had friends suffer from. And in our communities, we all know somebody
who has suffered through that also. I think that the balance of the report is
amazing. It really tries to strike that balance of
both sides of the story, as we’ve seen highlighted, especially section three. But no, I mean, in deference to Mac and to
Molly — and I’m calling you guys out specifically because my kids know your names by heart now
as we’ve spent conference calls until 3:00 p.m., 4:00 p.m. in the morning along with
Dr. Singh and the Booz team, really hammering this out and the input of our subcommittees. A lot of work went into this. And to those of you who are listening on the
phone, and everybody out there, the effort that we all put in was very genuine. We really tried to balance out all the different
nuances that are out there. There are always two sides to something. You want to make sure that you’re balancing
everything out as you put out guidelines, as you put out policy that everybody’s going
to looking at. You know, moving forward there’s going to
be the implementation side of things, which is going to be as important, if not more important,
because the entire year would have been wasted if we don’t take it to the next step, which
is making sure that we take these ideas and move forward and make sure that everybody
understands what it was that we’re thinking and understand the nuances of why it’s important
to move forward with it. Cece, I mean I think the points that you made
are important. And you know, it is something that we have
to think about also, which is both sides of how do we — how do we create and strike that
balance? So, that perspective is extremely important. Dr. Singh, thank you so much. Thank you for teaching me and teaching all
of us how government works, and how to make it work, and how to come up with a report
that, hopefully, is going to be impactful. To the rest of our task force members and
those, of course, on Subcommittee Three, and the subcommittee chairs, and everybody else,
thank you for coming up with an amazing report. And I think it’s going to be impactful, especially
as we take it to the next step and to the next level.>>Vanila Singh: Any other comments? Oh, go ahead, Cindy, please.>>Cindy Steinberg: Sure. So first of all, I just want to really thank
the patients who came here today and spoke. You guys were really, really powerful. And, you know, you’re sitting here representing
millions of other Americans who are struggling and have been for so many years. You know, I’ve been doing advocacy since my
accident. You know, it was more than 19 years ago. And I have to say, I have not seen a lot of
big changes in all those years. People are still coming into my support group
every month with all kinds of conditions, having seen multiple providers, having been
really discouraged, having become more and more isolated. So, I want to say that I think we’ve done
incredible work. I want to thank everyone here for the time
you’ve put into this. It took a lot of advocacy even to get this
piece in cara [phonetic sp]. And without advocacy, and without people speaking
up and trying to change things and being really persistent at it, we’re not going to get change. So, this is only a baby step, I have to say. You know, I know people are congratulating
everybody about the report. But the report is a piece of paper. That’s all it is. And it’s going to mean nothing unless people
really advocate for change and seriously stay in it because this kind of change takes real
dedication. I want to thank Dr. Singh for everything she
has done. I say in pain management, it was our lucky
day when we got a chief medical officer at HHS who was a pain doctor. You know, how rare is that? It’s really rare. And so, I really appreciate what she’s done
to corral us. It was a lot of work in the front end. But I know she — she’s the only person I
know who took the government deadline of a year really seriously [laughs]. I couldn’t believe it. I mean the National Pain Strategy is a great
document, but it took us practically two years to get it out. So, and that’s a good example. It’s a great document. There are a lot of things that our report,
you know, kind of seconds the National Pain Strategy. But you know, it hasn’t been brought to fruition. And I’m really hoping that this report will
mean something by being brought to fruition. And that means people really putting themselves
into advocating for this and speaking up about it. So, you know, thank you, everyone, for what
you’ve done here. I also want to say I don’t know if you’ve
seen your email or looked at press reports or anything, but the AMA has come out today
with an enormously strong statement in support of this report. And they’re really trumpeting it. So, I’ve just got a whole bunch of emails
about it. And so it’s impressive that the AMA feels
so strongly about this report that they’re going on record as wanting to work to get
it implemented. So, you know, kudos to everybody. [applause]>>Vanila Singh: Thank you, Cindy. I think we have Dr. Gallagher.>>Rollin Gallagher: Just echoing everybody’s
congratulations for getting this done. Some of us around the room have been doing
this kind of thing for decades. This is the first time we’ve ever gotten everybody
in the same room, working really hard. I mean all the factors, the education, the
access, the stigma, the treatments, the side-effects of treatments, the reimbursement issues, everybody
together. The patients telling the story very honestly
and openly in front of all of us, so we all had to respond. Thank you. As a public health person, that’s the way
you solve big public health problems, by getting everybody together. And the challenge will be implementation. This is the first step. So, thank you, Vanila Singh, Alicia, everybody
on the team, for pulling us together and making us go through this to the end that we’ve come
to, which is really a great report that’s going to make a difference. Just wanted to say that. Thank you.>>Vanila Singh: Thank you, Mac. Dr. Griffith.>>Scott Griffith: So, I just wanted to echo
some of the same comments, perhaps not surprising for Morgan, but certainly for the other patients,
that this has been a very, very helpful informative piece of things to hear from the patients. The thing I was most surprised by — and my
children talking about me as a parent would say it’s because I’m really old, but my experience
for a few years in the military has — I’ve seen a patient with similar problems to several
of the patients that talked. So, most of you probably don’t think of yourself,
necessarily, as an advocate for people in the military or their families. But in the reality, I think this is a very
good thing we’re doing in the sense that we have a lot in common. The first time I saw someone, you know, bring
patients to a meeting where we’re talking about how to do medicine — you would think
it would be going all the time — was quite a few years ago. An older doctor named, Mac Gallagher, brought
me out to a conference they were having for the V.A. in Las Vegas, and had patients’ testimonies,
realized how powerful that is. And I think it’s as powerful here as it ever
was. I do want to jump on the bandwagon with thanking
Dr. Singh for everything she’s done in leading this. I would want to share one vignette. So, there’s meetings, as you can imagine,
the military on the telephone that everybody probably has now. And one of those meetings was to have an overview
of what we’re doing on the Task Force, what this task force was about. And Alicia probably has a good insight into
this, but the amount of people it takes to keep me where I’m supposed to be and looking
at what I’m supposed to look at is significant. [laughter] So, I called Dr. Singh and said, “Hey, I just
realized this is on the agenda, and I wanted to make sure I had the latest thing.” And this was on like 10-minutes notice. She said, “Well, I can just call in.” So, that pretty much shut down the presentation. So, I probably owe someone a beverage from
that — from that meeting. But she updated it on very short notice. That’s the kind of passion she’s had for this
and the amount she stayed on top of this. So, we really appreciate that. And more importantly, our patients, you know,
both in the military and, obviously, across the country appreciate it too.>>Vanila Singh: Thank you, Scott. Rene.>>Rene Campos: I just want to say that this
has been an incredible journey, an incredible experience. Not what I expected, you know, over a year
ago. I appreciate Bill pursuing me for the Task
Force. And I actually feel very privileged and humbled
being among so many professionals. But having the privilege to represent the
military and veteran community has been inspiring. Your stories are very inspiring. And being an advocate in this space for close
to 15 years, I know I will take away a lot of information from this. I’ve shared a lot with other military and
veteran organizations that we associate with. But I appreciate us being able to work together
with varying levels of experience and expertise. And it really put, I think, the report in
a way that is understandable to the layman. Because I think that’s important because we
all, as consumers, at some point in time in our life, you know, are experiencing pain,
will experience pain. And so I think getting — taking care of us
and the public understanding of how to take this report and help mitigate the misinformation,
misapplication, that’s the way — and really a campaign, if you will, going forward if
we’re really going to change the culture. So, I want to say thank you on behalf of all
the military and veterans around the country. But I appreciate the experience and the opportunity.>>Vanila Singh: Thank you so much. Appreciate that. Oh, Dr. Adkinson.>>Sondra Adkinson: In addition to the comments
that have been raised, and the discussion time you’ve afforded us, and the heartfelt
thanks, and the honor that we’ve all had, as members, to serve, we call for the question,
Madame Chairman.>>Vanila Singh: Thank you. So, that is — since we have — let’s see. I have my paper here. Okay. Thank you for your comments. And thank you, Dr. Adkinson, since we have
exceeded the 10-minute discussion time. [laughter] I want to refer background to my previous
moment. And may I get a second?>>Male Speaker: Second.>>Male Speaker: Second.>>Vanila Singh: And I have that. Thank you. All right. I’m just, like, enthralled by what everyone
is saying here. So, I move that we approve this final report
for release to the federal agencies, Congress, and the public. May I have a second for that motion, please?>>Male Speaker: Second.>>Vanila Singh: Thank you.>>Male Speaker: Second.>>Vanila Singh: So, for that — thank you
for the second motion. All those in favor or the final report for
the Best Practices Inter-Agency Pain Management Task Force convened by HHS with the Department
of Defense, with the Department of Veterans Affairs and ONDCP please say aye>>Multiple Speakers: Aye.>>Alicia Richmond: Okay, those on the line,
please announce yourselves.>>Dan Gorton: Dan Gorton [phonetic sp]>>Alicia Richmond: Thank you.>>Male Speaker: Aye.>>Alicia Richmond: Dr. Hagenmayer? Okay, Dr. Clauw?>>Male Speaker: Aye.>>Alicia Richmond: Thank you.>>Vanila Singh: Okay, and then all those
opposed, please say nay. Great, so I would say that the motion is carried,
the ayes have it, and thank you so much you all, thank you so much. Greatly appreciate it, I look forward to a
great dinner with all of you, I hope everybody is coming, I think I can say that now, right,
that everybody is coming? No? Rene, yes, Amanda is? Okay, fantastic.>>Male Speaker: I wish I could [laughs]. [laughter]>>Vanila Singh: Are you flying in from Japan
for it? [laughs]>>Male Speaker: Yeah, a few hours.>>Vanila Singh: Thank you so much you all,
appreciate it.>>Male Speaker: Thank you.>>Vanila Singh: For those online as well. And so, we will — let’s see, I think we can
adjourn the meeting now, right? Should I provide a bit of a summary, I think?>>Alicia Richmond r: They said they don’t
need it.>>Vanila Singh: Okay, do we need — no, are
you sure? I can talk some more [laughs]. [laughter]>>Vanila Singh: Now you’re sensing what my
husband’s always like. It’s okay, I got it. All right.>>Male Speaker: Motion to adjourn.>>Vanila Singh: We have dinner at 7:00 p.m.?>>Alicia Richmond: Yes.>>Vanila Singh: At 7:00 p.m. We’ll see you all there, it’s moved to 7:00
p.m. Yes, same place, I’m looking at my federal colleagues. I hope that they come, because they are like
over this stuff [laughs] all right, thank you all, we’ll see you there.>>Alicia Richmond: This concludes our meeting
for today, we will start — we will reconvene tomorrow at 9:00 a.m.>>Vanila Singh: And that’s sharp, by the
way, because our senator — U.S. senator Cassidy will be there at 9:00 a.m. sharp, so please
be on time. But I’m going to tell you that again in a
couple minutes.>>Female Speaker: Produced by the U.S. Department
of Health and Human Services at taxpayer expense.

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