The National Pain Foundation Being Re-Launched

The National Pain Foundation Being Re-Launched

An effort to create the largest global digital community of people with chronic pain has been launched. The National Pain Foundation (NPF) is being reformed as an independent organization to transform the way pain is fundamentally understood, assessed and treated.

NationalPain&Report_logos“We decided to resurrect The National Pain Foundation because of the continuing and unmet need for more patient input into how pain is diagnosed and treated,” said Daniel Bennett, MD, an interventional spine and pain surgical physician who heads the Integrative Treatment Centers for pain management in Denver, Colorado.

“We plan to be a true advocate for the people by developing a comprehensive observational database of people with chronic pain, their behaviors, their treatments and needs,” added Bennett, who is a founder and past chairman of The National Pain Foundation.

The goal of NPF, which expects funding from foundations, industry and individuals, is to create what it calls “digital footprint of pain” that does six things:

  1. Bring about a true understanding of what pain is and whom it affects
  2. Enable researchers to advance pain treatments across socioeconomic and ethnic differences
  3. Develop true best practices for healthcare providers to deliver better care
  4. Uncover reasons for increased vulnerability to pain that considers income, education, gender, race and other factors
  5. Educate the public and bring about better understanding of people with pain
  6. Provide intelligence to the healthcare industry on what products and treatment people in pain want and need

“It is staggering when you think that 1.5 billion people are affected by chronic pain globally,” said Bennett. “The need for input directly from the people, their families and others about how we as the medical profession can best meet their needs is glaring.”

In the United States alone, chronic pain is a major health issue. It affects 100 million American adults, more than the total affected by heart disease, cancer and diabetes combined. It costs up to $635 billion to treat chronic pain in the U.S.

“It is not news that technology has changed the world. But it’s time we started to use technology to create this global community of patients and listen to them with the goal of helping them combat chronic pain,” Bennett added.

In a related announcement, the National Pain Foundation said will be a global sponsor of the National Pain Report, one of the largest online news organizations specifically for people who suffer in pain.  The partnership reflects the organizations’ shared values in helping transform the way pain is fundamentally understood, assessed and treated.

The National Pain Report has a growing audience of people in pain, thanks to its daily reporting of issues that are important to people in pain and their families.

“Our ability to attract a sizeable audience to our website and Facebook page in the last two years underscores that people in pain are looking for information and inspiration.” said Pat Anson, Editor of the National Pain Report.

“The pain industry has been dominated for too long by pharmaceutical companies, physicians, government regulators and law enforcement agencies. Many people in pain feel they don’t have a seat at the table when it comes setting policies and practices that directly affect them. Our goal is to change that,” Anson stated.

Authored by: Ed Coghlan

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We all need to stand together, somehow, some way. I’m all with you granny. The way we pain sufferers are treated is totally ridiculous!!!!!!

To Granny Ralls, Yes, under Kaiser Permanente, we’re under the nastiest pain contract, “you will do this, behave, be on time, be perfect with your pills and you can be yanked off them at any time, for any reason — Swear “I realize I’m lucky to have them,” name, address, social security, driver’s license. p.s. the slightest variable behavior we find troublesome will be grounds for local police. Now, go to pain classes (with GARBAGE info) even if the drive is hard and your spouse has to drive so you can lie in the back seat…). Now pee in a cup, and when we say “again,” do that…

Do I sound upset? I never even had an over-due parking ticket! Maybe a library over-due fine…

I am glad this has started.
First of all, I want all to know about Judy Foreman’s unusual and wonderful, big book called, A Nation in Pain. Oxford U Press. Available everywhere. She believes pain patients and knows how we’ve been treated. It will educate doctors!
Second — I’ve lived with my group of pain problems since a head-on car-wreck left me in pain Feb. 14, 1981. You should have seen how they treated pts. back when x-rays and old MRI’s really could’t “see” much of anything! (docs always say “that’s normal wear and tear,” as tho’ they’re denying a product warranty! A physical therapist trained in Europe diagnosed me successfully and then the doctor admitted I had torn ligaments in my back in addition to the roughening, slipped, whatever…in seven places. No wonder I couldn’t sit or walk. And, not until a knee surgeon did arthroscopy did he see my knee problems. But, no matter what you have, you’ll be told, oh, “it’s not that bad” for every injury your car accident or worker’s comp. case gave you. Because if they admitted it, their buddies the insurance companies or the corporation that are responsible for your rehab will have to pay. A lot of doctors were really businessmen at heart — their MMPI’s score the same, I hear!

Dave – Thanks so much. Finally an answer with homework in it! I, and my friend are ready to get on it! Thanks again, so much. I will find a way to post what i find out.

Dennis- my quick answer is for her to contact and, if she has the time to see her state or federal representative and ask for help. There is the patient advocate foundation, as well and other organizations that can help. Medicare rules are not laws and are of questionable legal status now that the Chevron doctrine has been overturned.
In addition there are alternatives to x rays such as ultrasound. Frankly, x rays- unless they are digital motion x rays or the equivalent fail to show the functional dynamics of implants. Ultrasound-the hand held type can be used while the person is moving the joints.
If these quick solutions arent acceptable- i have more.

I am new to this Site, but glad to have found you. I am identifying with all of you. I have been through HELL and back and things are still the same PAIN. I see there are a lot of people going through HELL with me. Please keep this great way of information going. I have learned a lot to make decisions for my pain treatment. May God Bless all of you that is now in pain and those who are being a voice for us to give of a better quality of life.

Not bad Granny! What is your vision/plan to change pitiless pain care in the U.S.-enquiring minds want to know..

A friend of mine just informed me that Medicare will not approve her doctor’s request for an xray needed to check on the status of rods in her hips. Somehow they are using a diagnosis from when she was a kid against her, that of dwarfism. I had no answer for her as to how to fix this problem. Another friend suggested bitching and complaining loudly, demanding an xray, but every pain patient knows where that will lead; you will be labeled incorrigible and could possibly lose it all.
I also had no answer for her, and I’m a 15 year veteran, because I myself can’t get an MRI approved from Medicare who doesn’t believe my diagnosis of 10 years ago. I have a rare bone marrow disease and an MRI is the only way to see the progression and deterioration.
My last one was 4 years ago. Since then I have lost almost all range of motion and my ability to walk. My doc says he has written 3 letters to no avail. My friend is a newer candidate to the chronic pain status we fear. Medicare also refused her Celebrex which helps her pain a lot.
I don’t know what the answer is when a federal agency is blocking medical treatment. It’s crazy that after 15 years of dealing with the system, even writing a book on the subject, I have no answer for her. It’s sad to have to tell my friend, ” Gear up. It gets worse from here, not better.”

Indeed. The motto of the Convention on the Rights on Persons with Disabilities says it all: “Nothing about us without us!”

Debilitating chronic pain, can be both a chronic illness and a disability. Chronic pain folk need to recognize that no one regardless of illness/disability, or the absence of either, should be stigmatized nor suffer disparate treatment in healthcare.

The United Nations Office on Drugs and Crime along with the World Health Organization agree that access to adequate pain relief is a basic human right in a joint statement which stated anything that impedes the ability to relieve pain through Laws regulations, policies, or laws violate international law.

Thus, the FDA and many others have a lot to answer for given their incessant assault on chronic pain patients and their doctors, eh?

Now, we have legislatures that have passed or want to pass laws that insist physicians force their chronic pain patients to sign unconstitutional “pain contracts” that violate the 4th Amendment or face losing their medical licenses.

Further, chronic pain patients who refuse to waive their constitutional rights to privacy and more are faced with extreme financial burdens if they do not sign these illgotten “agreements” or experience tortuous intractable chronic pain.

There is no justification for violating anyone’s rights. Please contact me if you’re interested in doing something about it, Folks! ♥

“Injustice anywhere is a threat to justice everywhere!” ~ MLK

I hope the NPF will address the stigma that still exists for being in pain and for receiving pain treatments. In addition, I hope that people in pain will work together to be heard by government officials and agencies, in this regard. It is shameless the degree to which government has kept people in pain at arms length when it comes to decisions that affect their lives. And frankly, as I have said before, the government in my experience views people in pain not as people- but as a burden to society. It is not hard to find written documentation to substantiate what I am indicating here.
Research has documented that this stigma prevents many people in pain from seeking treatment and dealing with issues surrounding opioids. The “balanced” approach that government uses as a slogan to implement degrading policies and practices is not balanced- and has been done without a full hearing from people in pain.
As Dr. Virchow, the father of pathology indicated, disease has two causes- pathological and political. When it comes to pain care,it is the politics of exclusion and degradation that continues to plague our Nation. As MLK indicated- Of all the forms of inequality, injustice in health care is the most shocking and inhumane. Let us work together to create a humane pain care system where no one is stigmatized or degraded because they are suffering from pain.

Thanks Ed for doing all your hard work in this field!

Sometimes (not my own immediate family), relatives can be pretty harsh when it comes to pain management.

I recently overheard a relative (she didn’t realize I was within earshot) tell someone else that I was addicted to pain killers. I was crushed!
So, with all your writers topics, it has helped me on how to cope with “ugly” relatives like this!

Keep up your hard work!!
Melisa H.

I agree with all of you that have posted thus far on every angle.
Since NPF wants to hear from patients,
I would like to add that I personally am so tired of hearing that opiates do not help with neurological pain. I believe they may not work for *some* as any drug does or doesn’t. I know for a fact that opiates do work for the extreme pain of *my* CRPS/RSD, I am sure others agree. I think many doctors (& others) are trying to push the myth that opiates don’t help reduce the pain of neurological pain/syndromes. I would really like this myth to be busted.

John Quintner, Physician in Pain Medicine

@ Daniel and Pat. Congratulations to you both from far away Western Australia. The tide is now coming in and will be unstoppable, given the wealth of knowledge we now have available for righting the many wrongs (e.g. social injustice, stigmatization) and thereby improving the quality of the lives of so many people in pain.

Great News!!! I’ll never forget what all of you meant to me when I walked across the country in 2005. Without your support I wouldn’t have made it. The thousands of people we touched, the word we spread about chronic pain awareness and education. It was truly a miracle. If there’s anything I can do to help please let me know. I am chairbound nowadays but still have a lot of energy and a creative mind and I’m always dedicated to helping people in pain and fighting for pain patient rights.
Sponsoring the National Pain report is a smart move. This is the best place to go to keep up with the issues and be able to comment on them.
Please continue your work with the “Doctor referral program” you started. It also was a smart thing to do to help us.
Great luck in your endeavors. You guys are the best. Remember Route 66!

Kudos to Dr. Bennett and the NPF for an ambitious set of goals that will serve to improve “parlous” pain care. I trust an idea-friendly environment where all stakeholders- especially people in pain- will be welcomed, will be part of the mission of the npf.
Now, is a very critical time for the NPF to dream boldly and act energetically to move pain care forward. We know with the headlines concerning opioid diversion and heroin deaths-that government is beginning to take a greater interest in issues concerning pain care. Unfortunately, as Dr. Bennett knows, Medicare has recently drastically cut payments for interventional pain care-and states have made it harder to obtain opioids. So, despite the headlines- the government has yet to develop an inspiring vision or energetic plan that fully addresses the issues in pain care in way that meets the needs of people in pain.
As Mr. Anson has indicated, the biggest stakeholders- people in pain are largely excluded from the universe of decisions that affects their lives. Their dried voices remain mute and meaningless and distant as fading stars. Government typically defers to medical organizations and the organized sector when it comes to pain care for government takes the position that people in pain are a burden to the rest of society and uses excessive resources and don’t know what they are talking about when it comes to pain care. Until this gulf is fixed I believe that however well meaning experts are and regardless of the strength of their convictions, there will be a continuing escalation of failure in pain care. The time is now for experts and people in pain to work together in common cause for the good of society.

YAY! It’s about time!!!