Opinion: Sign The Petition to Fund the National Pain Strategy

Opinion: Sign The Petition to Fund the National Pain Strategy

By Ed Coghlan

“It’s time for the chronic pain community to make its voice heard.”

That’s been a “chronic” theme of patient advocates, medical providers and pain patients for most of this year, particularly since the CDC Guideline on Opioid Prescribing was issued earlier this year.

One thing each of you can do is to sign a petition that calls on the federal government to fund the National Pain Strategy.

(click here to sign the petition)

We’ve left emails with the National Institutes of Health in the last week asking when the implementation of the National Pain Strategy would begin. We haven’t heard back.

It was released in March, with very little fanfare. Here is how we covered it.

“This is our country’s first coordinated effort to develop a plan to address the care of those in pain. It is a seminal event because it calls for a complete transformation in pain prevention, care and education,” Sean Mackey M.D., who directs the Stanford University Pain Program, told the National Pain Report in March.

The NPS was developed by a diverse team of experts from around the nation and leaders believes it is a roadmap toward achieving a system of care in which all people receive appropriate, high quality and evidence-based care for pain.

The petition describes chronic pain this way.

Costing $635 billion annually, 100 million Americans and 80% of veterans returning from Iraq and Afghanistan (and 50% of all veterans) suffer from chronic pain. Current research, education and treatment efforts are inadequate to address this epidemic, which often leads to suicide. In response, the Department of Health and Human Services (HHS) developed the National Pain Strategy (NPS), the country’s first strategic plan to achieve a system of safe, effective, and high-quality pain care informed by scientific evidence. The NPS will promote research, healthcare provider training, insurance coverage for individualized pain care, and public awareness of pain. Millions of families can no longer wait for solutions and urge the Administration to direct HHS to swiftly fund and implement the NPS.

Numerous pain advocacy groups are promoting the survey on Twitter and other social media. We encourage you to fill out the petition and to request that others in your groups do the same.


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Authored by: Ed Coghlan

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DAVE, I like that.


@ Jean- The simple answer is that people in pain and those who care about them, need to keep trying different things until they find what works for them. 900 times down 901 time up. Success as Edison understood is 1% inspiration and 99% perspiration. So in other words it will require a lot of determination to find or create organizations that will lead the way to a substantively better future for people in pain. People in pain should search themselves first and foremost. I would hope this generation will make the sacrifice that other generations have failed to make for people in pain, and make a great effort to dramatically change pain care. People in pain should do it for themselves, for their loved ones and for our Nation. But it is is unfortunate, that many in pain suffer from the can’ts, won’ts or that someone else has to do it- liek government or the health care industry- and if that is their orientation how can we expect much change? I understand that through lack of validation, through learned helplessness, thru the terrible intransiegence how people in pain are discouraged and dispirited or have come to believe poor pain care is the unchangeable natural order of things or if just the DEA or govt would leave their doctor alone or there was more spending on research or insurers paid for more trratment….. All of this reflects a projection that leads to false hopes. People in pain have to become the change they want to see in the world- ofr if they are unwilling to make the effort- why should anyone else. So people in pain have to get much more determined and have a better spirit. People in pain need a vision- for without a vision people perish. And it has to be a “good” vision. Next you need a plan. And let me say in the past pain care advocates have been conventional with their plans and not progrewssive enough.. They courted medical organizations who were deficient in vision and plans- just like the NPS. And so as i wish to see pain care be much different and better then it is now- i cant advocate for working with organizations and individuals who dont see the value in making pain care very different. So i dont think going to RWJF or other foundations- though they have power and resources- will change pain care much. Going to most all medical organizations wont work either for the same reason. And so far civil rights organizations have not had much interest in pain care. Disability rights organizations, animal welfare organizations, seem to be better choices. MAybe international organizations with a progressive agenda might also be a way to go. It also makes sense to start a new organization with very specific agenda with regard to issues/concerns in pain care and self fund. If only 5 million people gave $4 to an organization each year- $20 million is serious annual budget. People… Read more »

Jean Price

Dave…you make a good point…again!… about the absence of financial support and donations for pain in comparison to that received for the better treatment of animals! So what can we do about this?! Although most people in pain struggle financially, with the sheer volume of those affected, it seems even a dollar or two or five or ten from each person could amass substantial funds to help with advocacy, research, legal fees, and building a base to be reckoned with, along with funds for helping patients through catastrophic financial distress. BUT WHERE DO WE DONATE?? Who is soliciting or already has a general fund that will be used for the most important purposes, and not just for example, seminars for those in pain who already know the issues we face, or used for administrative costs that can always eat into the resources needed for more outreach into the government and the public?! Months ago I asked some of the different groups about this and was told “they had thought about it but it wouldn’t work” and “we are trying but no one is willing to work together on it”. Please let us know your opinions on this, and any places you think could put our dollars to good use. I still think we could benefit from a coalition effort with all the groups banding together for the purpose of stopping/changing what’s happening, advocating for more and better researcher, and creating a power base including funds for multi purpose use! And I continue to try to come up with names of those in the public eye who could wave our banner and help make our issues publically known. I feel like the general public has little to no idea what’s going on…and how it will likely impact them or their loved ones some day. If anyone else has an opinion on where a person might contribute, I’d like to hear it! I believe many of us are willing and would be able to do small contributions that could add up to a substantial amount…yet we haven’t the foggiest idea who would put our dollars to good use, or even who would accept them for a specific fund and not just for their own operations. Any and all input about this would be appreciated! Thanks!

Please come together and sign another critical Petition for the *Protection of* Chronic Pain Patients Who Require Opioid Medication and *the Physician’s* Who Treat Their Pain.
Please sign it & then share it! This is a fairly new Petition so it is only accessible via this link until it gets 100+ signatures. Then it will be posted on the WhiteHouse.gov on We The People Petitions page. Please come together for the millions suffering in the pain communities all over the country!


Ms Ogden- I have followed th trail of the NPS since before the 2009 ” A Call to Revolutionize Pain Care In America”- spearheaded by the now infamous Dr Portenoy. When the first draft of the NPS was completed- I unsuccessfully made a FOIA to receive it and DHHS denied it on the basis of it being ” a personal communication”- so it was not a very transparent or open process at any point. As I successfuly made a FOIA of the comments on the second draft of the NPS- i saw mine were included. After reading all the comments on the second draft- I have to say mine were arguably the most critical. I called successfully- along with one other person- to make as a goal lowering the prevalence of all painful conditions. I also called for democratizing the process and zero tolerance for disparities/bias in pain care. I also pointed out that the NPS suffers from multimorbidity agnosia. And i find it highly objectionable that those who worked on the NPS didnt think the American public had a right to know the cost of the NPS nor what measurables their would be. The talk about evidence based effective multidisciplinary multimodal patient centered- oh please- whatever that monstrosity is keep it away from me. Since the failed decade of pain research and control= the pain specialists along with the IASP hatched the NPS to further their designs to gain more control overpain care in the U.S., more federal dollars for their research projects and control what the public should expect and receive from them and pain care. Its a self serving antidemocratic power grab by right wing authoritarians who have failed to make pain care much better or different then it is. It wouldnt matter if the public gave them $100 billion for their designs- it wont work- it has a petty spirit and poor planning and failed to open the process up to allow for honest dialogue with anyone in pain. Most of the comments- contrary to what Ms Porter claimed in the PNN were from professional organizations- and frankly most of their comments were uninspired and uninspiring. PAINS and CPATF were only too willing to see “something” done for people in pain-and they quickly settled for a poor plan- the NPS. And now they want everyone to set aside their concerns and get with the program- my how democratic of them. As Einstein wrote you cant change a problem with the same consciousness that created it. The NPS reflects the superficial engagement of a few certaintists wishing who have organized themselves into star chambers who are keen on imposing their domatic and rigid ways on those that lack political capital- people in pain. They dont see that they failed with previous efforts and they were sloppy and careless politically in how they created the NPS- But frankly i knew that when the 2011 IOM report came out and the good ol boy network decided to leave out… Read more »


Kristen, thank you! I hope you will post this comment on any FB groups you belong to also, with the URL to this article.


Kristen Ogden

Dave, please know that I do share some of your concerns about the NPS. However, there were indeed lots of people involved in developing it, including quite a few chronic pain patients/advocates, some of whom put in many hours working on it as volunteers…no pay. You can find lists of the people who worked on it in the NPS appendixes. When the draft NPS was released in the spring of 2015, members of the public had the opportunity to submit written comments and suggestions. Lots of people did exactly that and some improvements were made that reflect stakeholder comments and input. I was not involved in developing the NPS, but I did take a lot of time to consider its weaknesses and submit comments from my perspective as family member, caregiver, and advocate for a chronic pain patient. Did you take time to comment on the draft? As a high-level strategic plan, the NPS needs to be fleshed out in an accompanying implementation plan with achievable goals and clear accountability…thus the current petition’s call for an implementation plan and funding. To be honest with you, the NPS doesn’t begin to adequately address my personal concerns which are focused on my husband who suffers from intractable chronic pain and has suffered with it for several decades. In my personal opinion, the writers of the NPS didn’t even come close to capturing the magnitude of the kind of pain illness my husband suffers from. However, my husband and I have both signed the petition because the NPS represents a huge amount of substantive effort put forth by large numbers of people, including advocates who themselves are chronic pain patients. It is, as I said, imperfect in many ways, but it offers a starting point to secure funding and it provides an opportunity to bring about more conversation on the national level about chronic pain and its impact on so many people. Is it far from perfect? Yes. But I believe it offers hope and a way to move forward. The plan actually acknowledges that chronic pain can be a disease in itself. To me, that is very significant! Dave, I understand that you do not intend to sign the petition and that is certainly your prerogative. But I would like to know something. What do you think the chronic pain community should and can do to improve the situation for chronic pain patients?


Ms Ogden- the NPS is a thinly veiled occupational strategy of a few special interest groups who wish to impose their designs on people in pain. To say it is imperfect is quite an understatement given that the NPS missed the boat on auditable goals, democratic accountability- there is no price tag on any aspect of the NPS. In addition, criticism included neglecting the elderly, children and acute pain. For a few star chambers to meet behind closed doors and promote their own agenda without the advice and consent of the greatest stakeholders- people in pain. You have yet to raise 10000 supporters for your NPS- even though USPAIN foundation has several times that in membership.
The NPS is a poor plan-and frankly a plan that was dreamed up 17 years ago with the conquering pain act. If it does get funded it will largely serve to solidify the political power of a few professional organizations and a few crumbs will be given to people in pain- just like the decade of pain research and control.

Kristen Ogden

Chronic Pain Patients and Fellow Advocates,
PAINS, the Pain Action Alliance to Implement a National Strategy, is again asking for your support of the White House petition to fund and implement the National Pain Strategy. Please take time to sign the petition and share it with your friends and family!! The NPS, if funded and implemented, can move our country forward in many ways to improve the lives of people suffering with chronic pain.

Some have written that they won’t sign the petition because it doesn’t specifically address every issue of concern to them. Some have said there’s no point in signing because the same old government agencies will again fail us in any effort to implement the NPS.

Here’s my take and my challenge to you. We all need to try to get past our personal frustrations and support this petition. It doesn’t say everything I’d like it to say, but I know this: it is critical that we do everything we can right now to keep the national conversation going about chronic pain and its impacts. The NPS, while imperfect, offers us the chance to take a big and important step forward. We need to put aside our differences and come together to support the petition and the NPS, because the NPS is the best opportunity ever to make a difference for people with chronic pain.

In case you haven’t read the final language of the NPS or may have forgotten some of it, please be aware that the NPS does address some really important points:

“• The public at large and people with pain would benefit from a better understanding of pain and its treatment in order to encourage timely care, improve medical management, and combat stigmatization.

• Increased scientific knowledge regarding the pathophysiology of pain has led to the conclusion that chronic pain can be a disease in itself that requires adequate treatment and a research commitment.”

Please…let’s not waste this opportunity to make a difference! Please sign the petition today and ask all your friends and family members to sign it and to share it widely!




I just went to find a link from my gmail on how animal welfare petitions get many ore signatures then petitions for people in pain: https://www.change.org/p/give-your-elephants-real-freedom/u/17383808?tk=4g3_RyaTcpreRgbRAnkjQDXMOsv7XHzwVLeAwOTKaeI&utm_source=petition_update&utm_medium=email
Here is a petition for elephants with over 200,000 signatures- and they are aiming for 300,000. Currently, the petition in this article has about 6,000 signatures and hopes for 100,000. That to me reflects the tragedy of pain care in America. How can it be Americans seem to care much more for the suffering of animals then for the suffering of Americans in pain?
And so this is worthy of an article, in my opinion- or a study. Animal welfare organizations in the U.S. receive hundreds of millions of dollars of donations each year. My guess is maybe pain care organizations in the U.S. get less then $ 10 million donations a year. It is very likely the same people suffering pain are more likely to give a donation to animal welfare then to people in pain. How tragic.

Sherry Sherman

I’ve signed it, shared it and had others sign it as well as many many more I’ve signed. They’re taking away my medications already as I was reduced, now I’ve no job due to the withdrawals I’ve suffered in May 2016 thanks to the CDC and my provider. I’ve been put back on some and off the ones I was switched to but a little late to get my job back. Therefore, I’ve nothing but time on my hands to advocate for any and all chronic pain patients. How about we start a post on Facebook asking to coordinate a March and/or drive to the White House steps which is what it took to get the ADA signed into law? We must be looked at as Chronic pain Patients and NOT addicts. Please continue to spread share and have not only your friends with chronic pain but how about having your friends and family even if they don’t have Facebook, log into yours and have them sign it. Is there a way to share this by email, if so I’m sharing with a lot right now that don’t have Facebook. What everyone needs to realize is after you sign it, you’ve got to check your email so you tell them your not a robot then your name will appear as signed. Please share this along also, thank you?


Krissy, make sure you goto the email you listed on the petition and click on the message in your box. It will open the Email and ask you to click here indicating your conformation of participation in the petition. If you forget or don’t do the email conformation then your signature is not counted.

Maria Rodriguez

Hi, Hello I had an appointment at the Beverly Hospital in a Danvers, MA, Pain Management Center, 01/29/2014. My symptoms are so many falls that have suffered,Head,Neck,shoulder and back pinch nerve very bad pain occurs daily and lasts for constant, the pain radiates to the electrical ,sharp,numbers, very discomfort is precipitated by sitting to standing. It is intensified by movement and activity. The affects on daily life are decreased appetite,emotional changes, poor concentration, limits exercise, limits shopping, limits housework and disruption of sleep. I have been in physical therapy, ice, heat, accupunture, accupressure, massage, chiropractic. Pain form forehead over my scalp, into entire body, upper and lower extremities. Right sciatica. Orthopedic sport center provided me with a lumbar epidural steroid injection, with no benefit, still with LBP and R sciatica symptoms, twitching of both legs when standing some R foot instability or weakness, wears a boot for a year, as soft shoes does not provide enough support, with all that Dr. say to me he don’t believe in pain medicine, if Dr. could not do anything for me, he had nothing to offer me, mourn, feel like a worthless person, what kind of doctor is that with no heart, this is my history.

Jean Price

Looks like this petition is on a site specifically for petitions….including one to have the government recognize the KKK! Not exactly the company we should be in, is it? Doesn’t make me feel real good that this will create important change and positive change…but at least it’s an effort to be possibly noticed. Thought we did this some time back, though….did we?!


WARNING! I signed this when it first came out. I just went in on the link to see how it’s going.


No one is signing OR IT IS NOT TAKING OUR SIGNATURES!. Please see my other comment above if you need help. This is not a BAD THING! We need to start somewhere with organization and help. WHY AREN’T PEOPLE SIGNING?? Let us know. Dave did. I personally don’t agree with him, but each to his own. At least he commented and made his opinion clear.


As Doug Comment suggests it maybe a little too little a little too late to get enough signatures on the NPS to have it officially responded to. And, its interesting to me why woldnt 1 signature alone be important enough to respond too? Doesnt one person count for something? But of course, government has decided 1 or 20 or 3000 dont count for anything. There is no legitimate justification for government claiming 1 persons concern doesnt count,let alone 4000. It is merely an attempt by government to quash the voice of people in pain.
The problem is, people in pain and those who care about them have more or less come to accept poor behavior and poor morals from government and providers. There is a lot of proudly indifferent people in government set on minimizing the voice of people in pain-they cant be bothered responding in a human fashion to the issue or to individuals. OS clearly government officials are deranged and lack humanity.
A good petition may not be enough, reasoning may not be enough much depends on how much time government has to take in dealing with the issues before they are willing to make some effort to address it. And so transaction costs matter. So the more time people in pain can command from government and providers the more likely they will change their ways. And time is money. So in essence the mmore time they have to spend on the issue the more money they have to spend on the issue. In addition, showing government as making errors= especially factual errors- gives leverage, but showing government and providers that they are mistaken or deficiient in knowledge or morals or performance- give people in pain leverage to call for changes. And this isnt hard to do. One thing is for sure government and big shots in industry get overconfident and sloppy- so people in pain can leverage that to their advantage. In the end analysis as government and industry are self satisfied and righteous- dedicated inviduals in pain if organized and clever can change pain care and overcoe the goofy pain care system we have today.


I just signed and shared this article even though I haven’t seen any one of these petitions make a difference, but that’s not reason to give up. In my attempt to advocate for the masses of chronic pain sufferers, I have found that so many of us want action and are always talking about doing something on social media, but few really get too involved. I’m not sure if it’s that they are afraid to put their real names out there. Or if they already feel defeated.
At this point I saw that there is over 4900 signatures on this particular petition but I am only the 6th comment here in the National Pain Report. My question is, how can we possibly get 96,000 more signatures in 3 months?. There are over 100 million people who suffer from chronic pain and yet petition signatures are so hard to get. I know that I have personally signed more than 50 different petitions and have sent over 200 letters and emails to senators and congressmen about every subject from discrimination at the pharmacy counter to the effects of the CDC guidelines on the chronic pain community. All I have ever received back from any one of these government representatives is form letters stating that they appreciate my input and will take my comments and concerns into consideration if the subject ever comes up for a vote. Meanwhile I have watched so many of the concerns I wrote them about being voted in almost unanimously.

I’m sorry but I guess I’m getting frustrated myself. I’m in a couple Facebook groups who both have 1500 or more members. I read about their frustrations daily and try to get them all involved but sometimes it just feels like I’m beating my head against the wall. I see comments of people who are down right mad and say that they want to do something and then don’t follow through.
I guess my question is, HOW DO WE GET THESE PEOPLE MORE INVOLVED because if they don’t step up soon, it’s going to be too late?


I will not sign a petition in support of the NPS. It is a rough beast that failed to learn the lessons from the failed “Decade of Pain Research and Control” and will create star chambers of a few special interest groups dictating to the rest of the country what pain care will be. Its about as anti-democratic as it gets.
Just as the Decade of pain research and control failed to reconcile conflicts with the DEA and failed to meaningfully involve people in pain in their own care- so to does the NPS. And look at the mess pain care is in now. This is the result of pain specialists seeing the rest of society as lost sheep that needs them as their shepard when it comes to pain care. And so, its deja v all over again. With Senator Hatch pushing the issue with NPS- just as he did with the Decade of Pain Research and Control- 17 years ago. No lesson has been learned.
Good pain care can only reslt when there is some unity in society. For a small group of experts to assume that the rest of society will hand them the keys to the kingdom is tragic-and people in pain are paying the price with greatly increased treatment burden due to the folly of pain specialists.
And even worse is that new laws- S483 call for deja vu all over again- for they ask for the same experts to meet and creat pain management standards. I dont know when the madness will stop and i dont know when or if our society will get pain care right. But pain care is clearly terribly wrong in America.

Heather Ramsdell

I have Adhesive Arachnoiditis a debilitating disease, compared to metastatic bone cancer without the relief of death. Iatrogenic most often caused by Dr.s. opiates are needed just to breathe it seems some days. Please help those that need medication to survive, peiple that are pain patients are not going to want to risk losing their medication by abusing them. Thank you.


i just found you guys. I was one of the hopeless millions and still am… I was recently mistreated by a pharmacy for asking that i have a prescription filled two days early so i did not have to bring a small child in a cast with me to pick up. The girl was snotty and rude..put on a little fake smile and acted like i didnt matter. I am tired of the “look” we get from nurses, doctors and pharmacy staff. Im tired of being treated like my pain is my fault somehow. Things have gone too far with the establishment trying to pretend our problems dont exist. We are being disregarded and abused…its not fair at all. When pressed…now they offer ideas like biofeedback and relaxation. Yeah…easy to say for someone who isnt in pain!
We need an agency to advocate for us. But where do we begin? My pain isnt controlled well enough to be very useful. I want to go back to work but i cant sit up for 8 hours.



Judith Jaeger

Let’s hope the National Pain Strategy includes accurate information on people living with chronic pain, not just the one sided views of our politicians, the FDA, the CDC, the DEA & others. Let’s hope the focus is on CHRONIC PAIN, not heroin addicts. I signed the petition yesterday.


My “thoughtful” comment just got zapped and it’s gone.

I am saying “thoughtful” in jest as if mine is more important than yours, so we can have a giggle at that.

I’ll quickly try another short one as I’m due to run (run?) down to my doc’s office and pick up an Rx slip before he goes out of town and before I go out of town. I got their on crutches the day before yesterday and the office was closed. They changed their hours! Bad day.

In the mean time, please consider signing and sharing this petition and this ARTICLE, one of the most important things we can do right immediately. There is no time to wait.

For this strategy to help organize, define, fund and educate pain patients, medical personnel and more, we need to make our signature list grow in little time!

Who likes to make comments on here that “we’ve got to do something?”

Here is one YUGE opportunity to participate AND MAKE THAT VOICE OF YOURS HEARD and do something for the sake of what we cry for and outright demand at times. Here is one solution-type OPPORTUNITY that can clear up this “chronic, unrelenting” confusion with the whole pain-government-doctor-prescription-pharmacy-insurance-research-recognition-veterans-etcetera situation we live in and devote (too much) time on. It is a BIG step in the right direction, and it is not getting signatures in the numbers it must have!

Sign, SHARE, there isn’t much time. And if you REALLY want to personally make a difference (then tell about it here on the comments if you wish), send this article and the petition to your local newspaper editors, radio TV producers or hosts, and your groups on FB and your other social media. Even if your FB group already has this, share it again by putting this article on the page AND the petition. Encourage them to subscribe and read National Pain Report and others, like Pharmacist Steve, as a way to keep up on what’s happening in this vital and confusing period of time.

Here is the link again, just like in the article, but this is the “whole” link to use, or copy it from the petition page. Don’t forget to mention this article. Not only is it important, but the comments here will be also.


Kristen D Ogden

Ed, thanks so much for this post! This petition is so important. The NPS won’t solve all our problems, but it offers the chance to take positive steps in the right direction – if it gets funded and implemented. The NPS will promote better insurance coverage for pain treatment, education to combat the stigma often experienced by chronic pain patients, education for medical providers, and research to develop more and better treatments. None of these things are likely to happen if HHS and the Congress fail to commit to funding and implementation!

I have often thought that if we could get every person who comments about chronic pain in National Pain Report, on Facebook, blogs, etc. to unite in support of just one major initiative, maybe we could gain some traction and visibility in our quest for public awareness and understanding. Let’s all get together and make this petition successful!!