OP-ED: Obama Gets It Right on Opioid Access

OP-ED: Obama Gets It Right on Opioid Access

By Paul Gileno-Founder & President US Pain Foundation

As a person with pain and President of U.S. Pain Foundation, I have been disheartened by the recent barrage of ignorant comments from the media and those in government regarding the pain community. From the harming labels of “junkies” and “addicts” to the notion that limiting pain medication to legitimate patients will cease the opioid epidemic, I am appalled at how society is dehumanizing and judging a quarter of our population. This type of rhetoric is only causing more pain and stigmatization of people with pain and disabilities. A solution will not be found unless all stakeholders are included in the conversation.

Being the leading patient-centric organization, U.S. Pain Foundation prides itself on helping individuals find resources and inspiration. We focus our efforts on creating initiatives and programs that will have a direct benefit to the pain warrior. Ensuring people with pain are heard, we make it a goal to create pain awareness by breaking down barriers and advocating for change. U.S. Pain exists to offer hope, present information, share stories and honor those whose lives have been affected by pain.

Unfortunately, due to the scrutiny surrounding pain medication and addiction in America, U.S. Pain has found itself fighting a different battle: public perception and the complete lack of regard and concern for those suffering. Instead of using our energy to promote empowerment, education and hope, as an organization, we have been forced to defend the patient voice. To make sure people with pain have options and are heard.

Let me be clear: I have no issue speaking out against how unjust it is to deny legitimate people living with pain access to the treatments their providers deem beneficial for them. I founded U.S. Pain to give those like myself – people with pain – a voice and a purpose. I will not rest until every person has access to all types of treatment care, and is no longer being discriminated against. That is my vow, and I will not waver. However, in 2016 we are still shaming people with disabilities, and it appears we are far from having a positive, proactive, bipartisan conversation regarding pain care in America, chronic pain and addiction.

There has been tremendous backlash since an ad aired during the Super Bowl on opioid-induced constipation (OIC). Instead of being seen as a tool to help people with pain on their journey, it is being used as a political witch-hunt. In just two weeks, comedians and politicians have used this forum for a punchline or to gain political points. All at the expense of the chronic pain community. Sadly, little focus has been centered on the pandemic of chronic pain, and how to help people suffering with debilitating pain and illness.

That is why I wasn’t sure what to expect when President Obama spoke Monday on the opioid abuse epidemic. I held my breath fearful of further stigmatization. Much to my surprise, the President rebutted the governors’ proposal to limit painkiller prescriptions, stating, ““If we go to doctors right now and say ‘Don’t overprescribe’ without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we’re not going to solve the problem, because the pain is real.”

This is what the pain community needed our Commander In Chief to say. This is what the public needed to hear, and this is hopefully what will ensure the patient voice is part of the solution moving forward.

To President Obama, I thank you for making sure the patient voice is heard. I applaud you on your commitment to put patients before politics. I believe working in conjunction with patients, advocates, health care providers, politicians, pharmacists and law enforcement agencies, we can mitigate both the issue of addiction and chronic pain.

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Authored by: Paul Gileno

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Dennis Kinch

Thank you so much Jean. I had to retire last year after 10 years of advocating and counseling people in pain due to my advanced disease but I recommend everyone in this crazy pain world do anything possible to help each other. It’s worth it in so many ways, and I’m so grateful for all those who helped me. Good Luck.

Dennis Kinch

Mary, PLEASE separate the legitimate opioid users from the rest of us, before you do these studies. Some of us, like myself, have tried all kinds of things and our meds regimen is at it’s optimum and it would be nice if people who mean well would stop saving us from the danger of overdosing. I have been on my meds for 10 years now and except when the rules change making it too difficult to get them, my quality of life is the best it can be without a marrow transplant or stem cell therapies. When I do have trouble getting the meds and I have to go 2 or 3 weeks without them. I get to see the difference in my pain, my ROM and my life in general and it is pronounced. The easier and smoother it goes the better my month will be, especially now tht my disease is advanced and I’m stuck in this chair now. Movement is almost nil and meds are my only solace. Every time someone looks into the “false” pandemic of overdoses, the legitimate patient pays the price. How about a study that looks into the rate of suicides because of the gauntlet and loss of help pain patients go through? They outnumber overdoses. Or how about studying the rules insurance companies seem to use as a profit tool, or the back room deals they make with clinics and Big Pharma at the expense of the patients. They outnumber all other diseases combined! At any rate, thank you for doing the research. If it is kept unbiased and the fate of the patient is kept in mind, it is always helpful.


Health insurance companies are only going to pay for the solution that will give them the largest potential for profit unless they start being regulated by government. But as long as lobbyists are continuing to buy office holding politicians, government regulations will be seen last. I guess we’ll just have to follow what happens in Indiana to see if insurance companies will stop paying for opiates because they now have to pay for other therapeutic options.


Mary Destri, what happens to the patients in these studies after the study is over ? Will the non medication forms of pain management be available to them and paid for, if their insurance won’t cover them after their opioids have been reduced ?

Studies like this are needed. BUT, they do no good when very few insurance companies will pay for any of the non medications methods. Insurance companies will pay for opioids. I wonder if this study will be the beginning of insurance companies not paying for opioids for chronic pain.


The UCSF study is just another way of preforming step theropies. Don’t get me wrong, I am not against finding other ways to treat and deal with pain other than opiates. My point is that many of us have already gone through different steps of controlling our pain before the use of opiate medications to suppress the pain we live in every single day of our lives.
There are probably a great number of us that can trace the origins of our pain back to a car accident, a slip and fall or a work related injury as with me. I don’t see step theropies like acupuncture, physical therapy and meditation as useless as long as they are used early enough to sufficiently treat injuries or even degenerative diseases. The problem with a lot of us today is that many of these expensive treatments were not approved by health insurance companies and workman’s comp years ago and would be less effective today. Also these greed based insurance companies found that it would be cheaper in the long run to pay for cheap medications then to pay for continuing medical therapies. So now a lot of us have gone through years of medicating injuries and disease while we continued to work. We couldn’t feel the fact that we were actually slowly worsening scar tissues, muscle tares and joint damage so much so as to the point of being irreversible. Many of us ended up having pointless surgeries that did nothing but elevate pain levels and in some cases cause more damage then do good.
My point is that you can’t fix years and years of damage by trying to initiate theropies that should be used in the beginning. We don’t need medical treatment reform, we need health insurance and workman’s comp reform. We need workman’s comp to forcing doctors to limit treatment of injured people by not authorizing imaging tests like MRI’s and CT scans to determine the extent of a work related injury. The medical professionals need to be allowed to treat patients as they see fit.

I just wanted to share a new research project at the UCSF Osher Center for Integrative Medicine, in collaboration with the SF Department of Public Health, which is utilizing mind-body interventions for the underserved community with chronic pain: https://www.osher.ucsf.edu/2015/12/18/osher-center-to-partner-with-sf-dph-in-chronic-pain-study/

Jean Price

Dennis…your words of support sound loud and clear for all of us. I’m so glad you commented and helped us all see what can lie behind us! Blessings, and thanks for your true words of both your struggle and your encouragement to find peace and a brighter tomorrow! We all need that hope!

Dennis Kinch

Deneece Lamb - - I know you probably don’t want to hear stuff like “Just hang in there and keep trying things. At some point things will change. Never give up.” and all that….but it really is the truth and the only thing you can say to someone going through what you are. Almost all of us either have gone through it or are still going through it. I went through it 20 years ago and it took me 10 years to get through, but I did get through it. Not the physical diseases but the anguish and chaos and terrible oppression feelings. All I can remember from back then was , when I was on the floor writhing in pain, I kept saying to my self, “Don’t ever give up.” When I finally got the right meds and the right therapy, physical, mental and emotional, it began the most amazing 10 years of my life. Now my diseases are at their end game and my limits are immense, so I can’t say this ends well, physically, but I found PEACE of mind 10 years ago and have been an advocate and educator for people in pain ever since. I had to stop last year because of the advanced illnesses but I still like to visit pain sites and hear others stories of the gauntlet and especially when a person comes through it, which can take a while. It makes me mad as hell that this is still going on 20 years alter! I am so sorry for your journey but I pray for you that things start to change and I hope that you keep on keepin’ on and find the same peace I found 10 years ago. God love you for your bravery and for sharing such a personal revelation!

Jean Price

Deneece…I can imagine you were crying when you wrote this! With good reason, dear…I was crying when I read it! Your struggles truly have been more than awful, and I’m so very sorry about your daughter. I can’t imagine how hard that was and still is. And to have all the physical pain and failed therapies on top of your sadness…well, it’s a testimony to your strength and the courage you have to still work at getting help. Please do continue to advocate for yourself and find the care you need. It’s so hard to find normally for people with pain, but I think work injuries bring up a whole other monster to fight. I agree with Krissy’s advice to find some support and information sites on FB and the Internet and stay connected to this one. Sometimes it helps to see you’re not alone and pick up tips or ideas on how someone else handled their problem. It also helps to see people care and are working for all of us with life limiting pain. Prayers and hugs, and please know we are all thinking of you and want you to succeed in getting the help you need for your pain.

Kristine (Krissy)

Deneece, this is a wonderful website and there so many good FB groups that would be helpful for you, and you for them. Just browse around FB for chronic pain groups and you will find many. Stick with this NPR and sign up on the website to receive emails. Good luck- it sounds like you could use some!

Deneece Lamb

I am an injured worker. 10 yrs ago at work I injured my neck c4 c5 c6 cervicle spine and also injured my left shoulder and left wrist. My drs treated my wrist and had after 4yrs of needing surgery on left shoulder, but even after surgery for the shoulder I was in horrible pain and started having radiating nerve pain both legs. I did all the physical therapy which I personally know works very well and recommend. I started having small bladder mishaps which I had never had before and the pain in my legs is still unbearable, so I kept asking my dr…could these be symptoms from my neck injury. I was always told ..No..I didn’t want opiate pain medication as I know of the possible addiction aspects, so my dr tried my on a few different medicines but nothing would relieve this new…hard to describe pain. Workers comp did approve an epidural in my spine between shoulder blades only after hiring a lawyer. This helped me so much I was able to find a minimum wage delivery job because I was unable to return to my job because they fired me a couple weeks after my injury. I had a trucking business 3 ten wheelers dump trucks and getting known in area since 2000 I was injured 2006 and 2007 is when I got new job. I was cashiering at store block from home as trucking is seasonal work….and I could make a few dollars through winter. I was injured lifting large coffee urn 6:00 am and the pain dropped me…I had tears streaming…I am pretty tuff ole cowgirl…used to hard work and you don’t cry…you get up and brush yourself off…the store had me work with restrictions..and assistant manager was cashiering..which was odd…and he was draining melted ice water from barrel and overflowed water lots of water on floor..so I immediately got the caution cones put out so no customers slipped and got hurt…the guy that created the mess stayed behind counter…and stood there and watched me stuggle to mop this up with my arm in sling and wrist brace…I am the cashier…still I though this is odd…well next day I figured out why. I came into work and was given an envelope. They fired me for not counting cigarettes. Retailitory termination….illegal….all my time there I received commendations for my work go figure so 2011 I reopened my case as I was miserable and my pain issures were not addresses. Still asking dr if it’s my neck….no was the answer…go to AME dr and find that my injury progressed…so now its c4 C5 c6 and now c7 2013 dr report says opiate pain meds and opiate muscle relaxers for rest of my life…a home traction unit, two epidurals per year as needed, and cortizone 4 a yr as needed…I should begin traction as this is now a progressive injury…that jump started degenerative disc disease….and home traction unit as I would benefit greatly…..2016 not one thing has… Read more »


Doug, there is a part of the ACA that talks about pain mangement and better care and access for those that suffer from it as well as talking about research to find better ways to manage the pain. But, since no way to fund it was included, it has been forgotten about. Personally, I wonder if it wasn’t just put in there to get more support for ACA since it is nothing but words on a piece of paper. I have put links below that show how SSA evaluates chronic pain. You must have an impairment that chronic pain ia a symptom of. Do you take extended release opiates for your chronic pan ? Did you tell your drs the details of how your pain affects your ability to function and did your drs write it down in your medical records ? Is your medical and non medical evidence consistent and do they back each other up? How long were you able to sit in the chair at the hearing before you had to get up ? If you sat there the entire time and it was more than 30 minutes, how can the ALj believe that your pain prevents you from sitting in a chair for any length of time ? How long does it take to prepare you meals ? Do you just let your dog out on a leash, or do you walk your dog ? If you can’t stand more than 30 minute, how do you manage to walk your dog ? Are there steps that lead to your from door ? If there are then that means that every time that you leave you front door and come back, that you have to stop to rest including when you take your dog out. When you filled out the forms that SSA sent you when you applied, did you explain in detail how all of the things affect you ? Have you discussed them with your dr and has your dr made notes in your medical records ? If you’re under 50, the ALJ lools at jobs in the national economy. If you’re 50+, they look at transferable skills that you have. I’m not asking you to answer the questions for me, I’m asking them so you can answer them and maybe see how the ALJ reached the decision. I don’t mean to make you angry, I’m just trying to point out that often when a claimant is denied it is because either their impairments aren’t severe enough OR they fail to explain in details how their impairments affect their ability to do activities of daily living to their drs and SSA/ALJ. How impairments and chronic severe pain affects us is individual. You can have three people with the same degree of impairments, same age and one still works, one has to take Lortab every 4 hours as needed and the other one isn’t able to function well enough to work and is taking extended release… Read more »


Thank you for taking a stand, Paul! There needs to be a balance with this issue. Very few legitimate chronic pain patients are dying from overdoses. Those who are dying need help and interventions but it is a separate issue as the majority are obtaining these meds illegally and have addiction issues. Doctors need to enforce opioid safety and accountability rather than complete denial of treatment. We need to get this fentanyl-laced heroin off the streets. That is what is driving up the overdose numbers. Fentanyl is laced with heroin in Columbia and Mexico and then sold cheap on our streets. The fentanyl deaths are recorded as “prescription drug overdoses” as was verified by a FOIL request I received back from the CDC. It is an epidemic as fentanyl is 30-40 times more powerful than heroin and 100 times more powerful than morphine. One of these days the media will get it right and report on this and the stories of actual chronic pain patients.

Dennis Kinch

Everybody is so idealistic! Don’t we all know yet how politics works? We should learn. Politics is why the DEA is picking on us. Politics is why ObamaCare sucks compared to what it used to be before it got ripped to shreds. Politics is why Obama mentioning legit pain patients makes a big difference. What he says however is also politics. Unfortunately politics has leaked down to the ground level, which wasn’t the case 40 years ago. Nowadays your daily relationships with anyone in power is driven by politics. What you say to your doctor and how you say it affects your relationship with him. Sometimes, just bringing it up can affect things, Ths used to be relegated only to those in power but nowadays, we’re all involved in it. So thank Obama for even mentioning us legit patients. The DEA listens to what he says. Maybe now there will be better action. And be a part of your own care but remember the politics of being a “patient.” And those of you so eloquently criticizing things …jump in and change it! You are needed! Join groups. Run organizations. Organize organizations. Help out people like Paul Gileno, who knows exactly what I’m saying about politics. His limits to great ideas IS politics. Now that Obama has mention us we need to write our Congressmen and mention what he said as we ask for help and recognition. And despite the critics, what every patient reading this has learned is: NEVER GIVE UP!

I have to agree, the commercials that claim.. For example.. Lyrica claims to help Fibromyalgia patients when you see the commercial the person is standing up, dressed, makeup done and so forth it doesn’t depict A REAL FIBRO PATIENT, REAL PEOPLE WITH THE ILLNESS, when my friends and family see these commercials they contact me asking did you try this it seems it would help you, and yeah sure it may help some but not everyone and I have tried lyrica and the side affects are insane worse than the illness.. Its not just about the medications itself its doctors knowing their patients time figure what’s best for them.. Most really just don’t care…


This is what I wrote when I shared this article:

In this article the CDC says 78 ppl per day die of ODs of heroine or opiates; yet, they admit that number maybe high. Let’s say that number is true. That means 28,470 ppl die per year of ODs. Depending on whose study you use (based on their priorities) 35,000,000 to 50,000,000 to 75,000,000 to 100,000,000 ppl per day suffer from chronic pain. When discussing and legislating the “epidemic” no one is considering the chronic pain patients. No one. And as one, I’m sick to death of being either dismissed or labeled a drug seeker. So even though you didn’t address us, Mr. President, I greatly appreciate you saying no to these ridiculous restrictions.


This problem began long before the Affordable Health Care Act, AKA Obama Care, Universal Health Care (single payer) is the key to stopping health insurance companies from calling all the shots in the medical treatment of us and our loved ones. Far too many people believe the negative propaganda regarding Obama Care and these people really need to look at the original proposal for health coverage that President Obama sent to the House and Congress before they agreed on the Affordable Health Care Act which is inadequate. The original proposal was modeled after our European allies who have government sponsored health care and it works and those who think that only privileged people should be allowed health insurance are no better than the government bureaucrats (Republicans) who are trying to take our medications away.
I will agree with some people on the point that OIC was not the right media to present a the problem because all it did was give comedians material for their routines and moronic politicians and cause to blame opioids for another issue. What we need is a commercial that shows people in every walk of life from children in wheel chairs to professionals doing their jobs stating that they are not an addict. Then have them all together at the end saying that they all depends on their opiates to servive.
It’s time to quit being part of the problem and time to be the solution.

Richard Oberg M.D.

Dave - many thanks. BMA well methylated I might add! Yeah, I come from the school of hard knocks also known as reason which is currently in short supply among our ‘leaders’ whether in politics or healthcare. In physician-world no good deed goes unpunished and the propaganda everywhere is so deep right now I don’t see any way out. The AMA made a few statements a while ago actually sounding uncharacteristically reasonable toward those here but that appears out the window now too. I guess when your membership’s fallen from 75% to around 15-20% they figure it’s time to join the ranks since everyone defected to their fragmented specialty membership societies instead and active practitioners seem to overwhelmingly support the CDC CORE group shenanigans. Everything’s politicized and polarized right now but I don’t understand someone attacking Obama on ideological grounds - I live in one of the most conservative states anywhere in the ‘southern block’ and this is the WORST area to have a painful chronic disease and get appropriate care so I really don’t see much difference. It’s all bad everywhere.

I’m submitting a guest post to help rectify some very important points everyone should find entertaining/horrifying and put this all in a better perspective. I’ll try and post it here if it’s not suitable for publication.


Please do not blame the doctors as it is not their choice. I worked in a hospital for 25 years and when HMO’s started it changed the way phycians were allowed to practice. They would fight so hard for their patients but it was called “cook book medicine” as the insurance companies dictated with every disease exactly how the patient would be treated from the moment they started in ER until the day the insurance company demanded the patient had to be discharged. They lost their power and I worked in discharge planning for part of my career advocating for patients to not be discharged when I knew they were too ill and would end up right back in the ED. I have seen doctors with tears in their eyes as they had to try and explain to the patient or their family why their loved one was being discharged when we all knew it was wrong, The doctors took huge pay cuts as did the hospital’s while the insurance companies were making billions on the backs of people’s life’s. They want to practice medicine how they feel is best for the patient!

I just have to add… The problem is the medical community itself.. I have Fibromyalgia, I’ve been sick for 11 years now (I said 10 in a post but its 11) and I have seen over 50 doctors and only 1 has actually helped but I found him 3 years ago so 7 years I was just suffering and not one doctor in those 7 years cared about me and my pain, the things that was said to me was so horrible and unbelievable that anyone that is a professional would even say.. Before I even said a word I was profiled, mind you I am well dressed and taken care of didn’t look like what a typical JUNKIE would look like now I had years running down my face my husband would come to these appointments and would be beyond angry at how I was treated, I was told… ALL U NEED IS SOME SLEEP, STOP BEING A BABY, U R FAKING, IS LIFE GOOD AT HOME, even had a doctor give me medication I was allergic to and he told me to just shut up and take I give this to all my patients with no problems, u the only one complaining… I mean, I felt worse going then what I did before I went cause now my hope was crushed and I’m still in pain, these doctors need to be held accountable for how they are treating people with chronic pain and the lack of professionalism, empathy, respect, compassion is just not there, I even went as far as to give a bad review but honestly what is that, nothing will come of it, and they do not prescribe medication that would actually help they will give something like a sugar pill just because they believe I’m faking its unbelievable, I’m glad the president stood up but doctors will continue to treat many people this way… I sure hope the movement stops this kind of treatment as well… I’m sitting here in tears thinking about what horror I have been through AND NO ONE SEEMS TO CARE….


bravo.. PC are terrible…and charge such high prices it should be a crime and i think its a hidden bit of obamacare?? Sad days for USA medical.

Jean Price

Just an aside…the ad that aired during the Super Bowl was mentioned in this article. I’m not at all surprised there was backlash from it! At best, it was a tacky advertisement…portraying a man with chronic pain looking longingly at several people who had come out of bathrooms, assumed to have pooped! He was even envious of a dog because the dog pooped! Please…that’s a great image of people in pain, isn’t it?! The Foundation told me in a response that the ad was to address “the stigma of talking with our doctors about constipation from opioid pain meds”. What stigma? Most good doctors bring this up and most patients are skilled at addressing body issues/functions with their doctors. So, I see this as a poor excuse for lending their name to such an outrageous representation. I do hope there wasn’t money involved for their sponsoring role….I would be truly disappointed if that was the real incentive. So many other real stigmas need addressing…in ways that don’t draw the scorn and humiliation this ad did. I can’t imagine someone considering this was a good vehicle to bring chronic pain into the foreground. When I saw this ad, I was shocked to see their association with it. It resulted in adding another dimension to our untrue labeling…instead of just being druggies, now we are viewed as anal retentive druggies! Don’t think this gained us a thing. And as I said earlier, Obama’s speech wasn’t as positive, in my opinion, as others have stated. It felt like political jargon and not the firm, compassionate support we need to totally separate the issue of abuse from prescribing for chronic pain once and for all. We didn’t get that. And I’m not holding my breath that he’ll actually deliver any solutions.


I myself do not believe the president. Sorry. Yes he may have said that, but as an advocate for many organizations and a pain ambassador who constantly take info to drs offices and hospitals to help educate them on pain and other disorders it just doesn’t matter anymore. Our new generation medical world is ruined by the government and can not practice Medicine as they should be allowed and as they went to school for. Their is another article I shared to the organization that basically he is referring to his Obama Care. So anyone who has it will get the treatment and meds they want no matter what when you leave but when those of us who are in private insurance and go to the ER get treated like addicts and as it says he wants his rating to be high and have all positive surveys so when they leave they just may get a “Vicodin goody bag”. Seriously. I quit going as I have AS which no Er Dr or nurse even knows what it is, severe fibromyalgia documented by rheumatologist who stated I am past the point of treastment, osteoarthritis in my entire facets of my spine, AC shoulders, right hip, left knee, bilateral hands, osteopytes as well on spine and hip, multiple bulging disks in my cervical and lumbar spine with abudded cord, impingement in my shoulders, neurapathy, IBS, and a out 20 other diagnosis but you get the point. I follow pain management as 2 rheumatologist have told me I’m too complicated and can’t take MTX or biologics as I got one i got pneumonia twice and my hemoglobin dropped really low and was so sick and weak. But beside this. I have been told to go to the ER by my PCP or pain Dr with complications of AS or fibro flares and totally unable to walk where my husband had to carry me in and this was last year. They took me back and ask for my meds and history as I always carry a copy of my drs diagnosis list and meds with me. And all have been confirmed by Xray CT scans MRI Bone Scans and blood work so no lying there. It is real, the pain is real, the meds don’t impair me in any way shape or form because I’m in pain. Anyways they came back 15 min later and discharged me and told me I wasn’t getting any meds there and to see my PCP just because I was on narcotic pain meds. I told them I didn’t need there meds I had my own I go every month, I need help as to why I can’t walk, I need treatment. Nothing sent home once again. No labs nothing. My husband had to carry me back out as they wouldn’t even let us use a wheelchair. I filed a report as the drs need to stop steotyping patients as drug addicts SEEKERS or whatever as I had all… Read more »

Jacqueline Oben

I been suffering ftom FIBROMYALGIA for 27 yrs. and other Confition like EDSyndrome. I try all pain Killer pills. I never been in drug Never in my life. But, the one my Dr prescrib me I can have a life without pain. Im in stage 4 in this Cond. lossing TMANDIBULAR. Lossing Bone in my Mandibular upper bone. And NOW, I lost my husband, no evonomic help, and SS reject my Disabilty, because I need 3 credit, that I work, but the Co. Do paid my SS, they close Operation, and I dont have evidencie. I quiet wirking because I start with the symptoms in 88, How I can still working like this??


I applaude President Obama for taking. The stand against the norm of the rest of the Government and speaking some truths for us, as we do not have that “big, superstar ” voice willing to stand in front and speak for us like other conditions. We have truly been victimized by this newfound war on opioids and the statistics are very convoluted on the subject in my opinion. They like to lump the chronic pain suffer with the heroin abuser (no pain issues, possible & probable mental issues though, but that’s another story) the statistics they have are all over the place. Again…the pain warrior that took their life due to being cut off their meds abruptly and decided they couldn’t go on anymore lumped together with the person who just had to get higher. There should be many subcategories in their abuse statistic models, not lumps, it’s all so very different!
It’s also so very sad that I feel they pray on us because were an easy target for them. We don’t have the ability (most of us) physically, financially or mentally to fight back, protest or organize as other groups would.
Then there’s those torturous Pain Management Clinics….what a joke for most!!! I went through 2 of them, 1st wouldn’t treat me as he couldn’t diagnosis me with another condition, as if the 8 I have aren’t enough?! The second ripped me off my opioids cold turkey, put me on Tramadol and gave me injections with no MRI which landed me in the hospital, the nurse there also called me a drug addict! I am now horrified at the thought of any PM doc!!!
These are our bodies, and I firmly believe our choice!!!! And since they haven’t noticed, since they’ve created this problem with taking our opioids away we now have a surging Heroin epidemic…hmmmm?!?!! Train the right docs, our PCP’s and Internits with how to deal with chronic pain, ya know the docs that we have relationships with that have seen us for years and years that were not just a number or payday for!!!! Mine, by Gods grace still helps me but not like he used to as he’s scared and that’s not what the laws state!!!! This has to get fixed!
Keep on keepin on my fellow Pain Warriors!


This is not to offend all the people who work hard to help us. But the President is a liar and the only reason he even said he cared is because he wants to ensure another crazy democrat gets into office! Hillary is supposedly picking him for Vice President! God help us all! Did we get to keep our doctors? No did your health insurance go down? No he lies about everything! He is making millions just on trying to take away guns! He grew up with a father that indocturned him to Hate America! He is not Obama that is not his real name his birth daddy was Frank Marshall a friend of Joseph Stallin. Need I say more! We are going to lose our medications, they are putting doctors in prison! Please do your research! God help us! I worked in the medical profession my entire career and he has destroyed it!

Kristine (Krissy)

Nancy, don’t worry about it. Thanks for writing. You should hear some of the stuff I’ve come up with. It’s all good 🙂

Dennis Kinch

(This ended up being 3 pages! It’s an issue that will always get my gander up, I guess. Here is a short version.) We are the largest, most misunderstood group ever, in history. We are a worldwide group also, with 100 million in the US. Can you imagine how many of us there are in the world? At any rate: As a 25 year sufferer of chronic pain due to a bone marrow disease that is permanent and deteriorating I can honestly say that many people don’t know about what we, as chronic pain sufferers go through. 10 years ago I pulled a wheelbarrow across the country to bring awareness and education to the plight of pain patients due to the mistreatment and abuse brought about by a system of greed and ignorance. Many detractors who didn’t have a pain disease wondered how I could pull 125 pounds of gear 3000 miles if I had such a painful disease. They didn’t seem to grasp my need to bring awareness to such a “small faction of society. It’s a rare disease right?” They always said how nice it was that my disease was gone and how good I looked, yet, when they heard me speak to crowds of people in pain, they realized some important things quickly, things like: They learned my disease will never be gone, or this good, either. They learned that I had learned to walk properly in therapy and I had been practicing for 2 years from no walking to walking many miles a day. They learned that people in pain are extremely adaptable to their needs in order to function and that I rigged a special harness to a 2 wheeled wheelbarrow instead of carrying a backpack which would have been impossible. They learned that I had lost everything I owned including custody of my kids, my jobs, my cars, my houses, my insurances because no one believed me when I said I was in serious pain and something was wrong. And this happened twice in 10 years leading to 2 bankruptcies. They learned that it took me 2 years of trials and some very bad years to dial in my current morphine and Tramadol regimen and that once dialed in I felt good for the first time in many years and this caused me to celebrate by walking a lot. And then they learned the biggest lesson of all. They learned that as bad as my life had been going through that gauntlet of mistreatment and abuse by a corrupted medical system, there were over 100 MILLION people with the same story - or worse! This was always eye-opening, mind bending news and I had many doctors and reporters and pain patient family members come up to me after and apologize for not realizing how bad things are for so many people. You see, we have no voice. We have no TV commercials. We have no celebrities or news reporters bringing awareness to our plight… Read more »

Jean Price

I’m not at all sure this is what we’ve been advocating for…no warm fussy feeling for me after listening to his speech!! He specifically said if we limit opioid prescribing without other mechanisms in place…didn’t day he wouldn’t be okay with it, said there need to be other mechanisms in place first! Hopefully that does compute to the multiple modalities many people have already tried without success! And I’m not clear about the mental heal is real statement following the pain is real statement. Seemed to be confusing at best, and judge mental at the other end of the spectrum. It was political language…I wanted compassionate, full support of people with pain language. I didn’t hear that. So I can see a point to your anger, Nancy. It’s frustrating to not have a clear goal, a clear incentive for helping people in pain who are, as we speak, being denied any…or adequate!… pain medication for the misguided, untrue purpose of halting drug addiction and overdose. We have all stated the problem and some solutions clearly. That’s what I wanted to hear and I didn’t. I’m from Missouri, Mr. President…show me!


Krispy, I sincerely apologize to you and thank you so much for all your help! I just do not appreciate the way Obama has ruined our great country but that is for another post. I was out of line and please accept my sincere apology!


Thank you President Obama,
Now all we have to do is get Social Security to recognize crippling chronic pain as a disability. For all of us who know, suffering from chronic pain that is aggressive and the constant worsening of pain and the degeneration of mobility that we all have experienced is not only miserable, it is also very embarrassing for us.
A month ago I sat in front of a judge and gave him my story. Last week I received a denial letter stating that I am disabled but not enough to receive benefits.
I am unable to stand for more than 30 minutes at a time and that long almost puts me in tears.
I am unable to sit straight up in a chair for any amount of time.
I am unable to climb stairs with more then 6 steps without having to rest.
But because I admitted that I am able to cook one meal a day for myself, I am able to work in the fast food industry.
Because I am also able to walk my small dog, I should be able to work in housekeeping at a motel.
The DOT wittiness even agreed that I would have to find a position that I would be able to take 3 hours of breaks a day, I was still denied.
What a joke.

Julia DelReal

It sure would be nice if all of us humans that are in such pain ( arthritis etc. ) could get some help instead of trying to take it away from us. Mucho ❤️ Gras..

J Cole Mitchell

This is probably the only time ive agreed with obama. My 2013 stroke paralyzing my right side has been the most painful ordeal. After 3 yrs i am still in pain especially every morning and doc will Now only give me 2 tyl 3 per day.. I suffered for years for not getting enough hydro. I was given between 20-25mg a day.. older docs/retired docs have advised i would have gotten 40mg back when docs treated pain. I have moral and ethical reasons that stopped me from going to bureaucratic pain clinics. Thankfully my pain had lessened b4 the Un-American mandated pain clinics started to pop up all over. Yet i am still allowed to suffer every morning as opioids had been the only real help and i tried all the new fangled cr*p that didnt touch my pain and stiffness. Very disappointed that doctors don’t speak out enough about the new laws/rules that cant differentiate those that have proven true pain and the idiots/addicts & drug dealers. Yet they now can with everything hitting doctors computers and pharmacies that will allow them to tell if folks are cheating.. Get rid of the mandate that ALL must go to pain clinics and are treated like darn addicts. Let me GP do the work he went to school for. IF its life threatening pain situation or GP is stumped then those folks go to pain clinics.




It seems I wasn’t the only chronic pain patient who contacted President Obama following the announcement of the $1.1 Billion to fight the scourge of drug abuse! So he may have “heard” the request to address the needs of those in chronic intractable pain but chose address the need with words rather than more funds — for research into better treatments at the very least! I know the President is a very busy person so perhaps it is a not yet . . .

Joanna putman

I’ve been in pain for over 10 years, have 10 painful conditions-including neuropathy and CRPS. I want to know what Mr. Paul Gileno would like from us to help. Our largest problem, as pain patients, is the pain. It’s hard to have a voice when one has no idea from one day to the next if we’ll have a good day or a day where we can’t move. There must be something small all pain patients can do to help. Thank you Mr Gileno and the foundation for all you do.


I am so tired of trying to justify using pain meds for chronic pain I suffer every day of my life I could scream!!!! I hate to say it but spend a week or two in my shoes and we will see how long before you are seeking relief! It has reached the point I don’t even tell or discuss my health with anyone but my husband because of all the backlash!

Kristine (Krissy)

Ahhh, Kerry. Glad you brought that up, thanks. I have now seen three versions of what he said!


Dr. Oberg- Im glad you stated what needed to be said-that the President hasnt lead the way for people with chronic pain. And that $1.1 billion is not going towards helping people with their pain. Youre pretty insightful for a doctor- i take it your basomedial amygdala is well methylated. And Im glad you uderstand what Dr Virchow wrote about disease so long ago- that it has two causes- pathological and political.
Though Australia has begun implementing their National Pain Strategy”- our Nationl Pain Strategy- which, pehaps, has its beginning in 1999 with “The Conquering Pain Act”-which was supposed to be out by fall of last year- is still not out of the barn. In addition, the draft of the NPS made no metnion of the amount of money that will be spent toward improving pain care(despite the pain specialists and pain advocacy groups wanting Americans to rubber stamp that pig in a poke). So while there was a sense of urgency to address opioid diversion- there obviously is no sense of urgency to address the needs of people in pain via the NPS. I guess thats what government officials mean when they use the big lie technique in talking about ” balance” in pain care.
I doubt that we will know once the NPS is released how much money will be allotted to implement the NPS. And needless to say- we know that most of it will go to special interest groups-and to those involved in creating the NPS- and probably the IASP( the force behind the NPS) will get a fare share of the monies in one form or aother.
I have lost faith in what i call the “hard approach” to pain care- the professions, the institutions, government, procedures, and pills. I think a softer approach-people helping people, more direct access to resources is the countermeasure to the hard approach needed to improve pain care. As Jefferson wrote- depedence breeds subservience and makes men ripe for the designs of others. There are too many “designers” in pain care and the “others” have too little say over their care.
Best regards.

Richard Oberg M.D.

Once a major political initiative is announced from the President frankly undermining chronic pain advocacy with 1.1 billion in proposed funding for addiction you can’t just take it back. He needed to lead with ‘chronic pain patient’ advocacy rather than it being an afterthought perhaps now influenced by advocacy groups like this and all the letters he got like we sent about ‘our’ side (I’d hope that’s the reason anyway). All the references posted to hhs.gov site are the same as the CDC site which can’t seem to get illegal drugs and prescription drugs correct in their statistics. I, like others, am glad he said it but sadly the damage is done. We have no equal balance from the governmental power brokers here whether state or federal. The big winners will remain addiction clinics and bad news for us. As Terri Lewis, Ph.D., has correctly and eloquently pointed out, this was the one chance chronic pain patient advocacy had at the federal level to provide the balance we so sorely needed and has been further undermined. Federal misinformation about legitimate opioid use will continue unabated - they were pretty much the ones who started this to begin with weren’t they? If it was ‘we the people’ I somehow missed it. The FDA seemed the last federal holdout to sanity and opposed a loud (and ignorant) opposition to new long-acting opioids such as Zohydro but that is changing also and not favorable to us. I think we’re all so desperate for something good we’ll take anything - our state and many like it are some of the worst for legitimate chronic pain patients and there won’t be any federal mandate to change it.


Has anyone read Medscapes article entitled “FDA Call to Action on Opioids Met With Skepticism” ?

Shay'La Harris

I am Extremely Happy to have read about Our Commander in Chief statement on this issue.

President Obama does care!! I am thankful he is in our corner. After over 20 years of chronic pain and having help with OxyContin, I am now bedridden with pain daily. A year ago, the doctors in my little town, decided to stop prescribing opioids. I ended up in the hospital for four days. Was put on Suboxone, which I hate!! I was not an addict!! My body was dependent, my brain was not!! When the medication goes to real pain, I never got the “high” I hear about. I am now without any relief from chronic pain thanks to people who have no clue what it is like to feel pain all the time!!

Kristine (Krissy)

Nancy, if we didn’t believe that the President or anyone else had some sense of care for us, we wouldn’t be here doing all this research, writing and work, for free. Believing that someone out there cares even a little, despite being paid by pharma or anyone else, is what keeps me going, This, even though I’ve lost my family and “friends.” There has to be some positive attitude and a little faith everyday, even if it’s hard, or we’re lost a battle.


Gileno, you are an educated and intelligent man. How can you think that the President is referring to chronic pain patients having better access to opioids ? I mean no disrespect, I would really like to know. Maybe the President said other things that weren’t included in your article. Are chronic pain patients so desperate that they hear what they want to hear instead of what is actually said ? If they are, this may explain some of the confusion around this issue.

Anyone I knew suffering with Fibromyalgia was in real pain. We were not seeking either drugs, or a free ride, just relief from the horrid pain. So grateful to be in remission, both pain and prescription free, at long last! Whatever happened to compassion? So much judgement and criticism instead of trying to understand and alleviate the very real problem of pain control! We need more people like President Obama who do not choose to demonize those who seek nothing more than to live normal, productive, pain free lives.


The next 5 words after he says the pain is real are “the mental illness is real”. And he goes on to say that limiting prescribing opioids has to be a part of a comprehensive approach? I’m assuming the mental illness comment stems from the new term that’s been adopted that calls pain patients using opioids as having “Opioid Dependence Disorder”. He inserted the mental illness is real in the same sentence as the pain is real. The president of PROP and who helped write the CDC Guidelines, Dr Jane Ballentyne, states “Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substances use or other MENTAL HEALTH conditions”. Another words she’s not stating we need psychological care as a result of chronic pain. She’s stating OUR PAIN COMES FROM MENTAL ILLNESS! Isn’t President Obama’s remark about mental illness used in the same sentence in this article issued with the same idea?


OH please if you think the President cares about our pain and suffering think again, look what he has done to healthcare! He is getting paid by Big Pharm to say this as nothing he says comes free. He makes me sick and he does not care about you or any of us!


“If we go to doctors right now and say ‘Don’t overprescribe’ without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we’re not going to solve the problem, because the pain is real.”

I don’t see that he said anything about opiates being used for chronic pain. What I read is non opiate medications and things like biofeedback, accupuncture, etc. Nothing is said about insurance paying for “some mechanisms” since most insurance won’t cover the majority of non medication forms of pain management.

It doesn’t make sense that he would do and say what he has about the opioid abuse and then turn around and say that opioids need to be available to those in pain. You have to realize that the way politicians and other see it, there are very few, if any that are in chronic pain that aren’t receiving adequate treatment. You can’t just listen/read what is said, you have to also look at what is not said. Why wouldn’t he say something specific about opioids being availabe to those that had proven with medical documentation that they have a reason for opioids for chronic non cancer related pain, if that is what he meant ?

Jeremy Goodwin, MS, MD

Finally a government official-the highest in the land-who sees the gist of the real problem and the DISGUSTING and MISGUIDED way that opioiphobia has been handled by truly misinformed, judgemental and non scientifically trained ER doctors as well as others, and the even more so by inexcusable recommendations made by the scientist-clinicians at the CDC who have no expertise in the area at all, all of whom have directly been responsible for the increase in heroin on the street by their faulty logic-based limitations of opioid pain medication provided to the many tens of millions of those suffering in pain who are NOT addicted ( only physically dependent and tolerant which is NOT the same thing) and who were doing much better before than after their heartless cut-backs in dose and combinations of medications, actions performed irresponsibly and without other legitimate plans being put in their place. The insurance plans are also to blame for not funding interdisciplinary and collaborative work needed with other branches of care such as physical rehabilitation, Chinese medicine and other types of health care, mental health and coping skills training, and social work. They are all needed to minimize using extra medication where no viable options exist. The sudden misguided focus on heroine and other street opioid use, as well as industrial-made medication, was long ignored when the problem was the burden of African American and Hispanic people’s, also fully part of the USA, and the grossly misguided knee jerk reaction enacted when accidental overdoses spread to the white populace reveals racial disparity in care. Those two things are crimes in themselves. At least the President recognises that. Thanks to President Obama we might correct this mess and I as well as others who are expert in this field would be glad to become involved if insurance interference is squelched and the medical boards prevented from ruining our careers on trumped up charges that worsen the problem for patients and clinicians alike, a personal and family -destroying involvement that has made many doctors literally hate the system in which they work and then leave it. We have enough stress without worrying about biased and incompetent state boards removing medical licenses from the few actually caring for and helping those in chronic pain. Genuine misuse of their position to Prescribe incorrectly does need to be addressed but the whole problem needs to be far more insightfully thought through. It involves the whole system that must be revs bed with empathy and kindness. The medical boards answer to no one, write one thing and act in another way and that is Kafaesque and extremely victimizing to all concerned. Let us now try to solve the problem, get legitimate patients off street drugs and into proper care, and the same for those with straight addiction problems who need to be addressed as a separate but very much in need group with racial and ethnic disparity addressed in both cases without bias for once. The time to start reorganizing… Read more »