Persons with pain across America, and worldwide, lost a leading ally in the War on Pain. After 15 years, and without warning, the American Pain Foundation closed-down operations. And so, the lights went out on the largest national advocacy organization serving people living with pain, their caregivers and healthcare providers, and allied organizations. Who will fill the void?
A brief notice appearing May 8, 2012, at the American Pain Foundation (APF) website simply stated, “With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately.” It went on to say, “The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.”
The notice further indicates that APF hopes to transfer its various informational and educational resources to other organizations; however, the status and timing of this are unknown. Meanwhile, there is no access to any of those materials, which thousands of persons have found helpful over the years.
A History of Growth & Service
AFP had its beginnings in the mid-1990s when the American Pain Society recognized that, while there were several organizations like itself serving healthcare professionals in pain management, there was a critical need for a new, independent organization solely representing the interests of patients with pain. After more than a year of planning, the Society helped to found the APF as an independent, nonprofit organization that would not only educate consumers about pain management, but also would serve as their collective voice to advocate on their behalf.
APF began operations in late 1997, and opened an office in Baltimore, Maryland, in January 1998. By late 2001, the organization had grown to 10 paid staff members and several volunteers who responded to thousands of requests for information, provided free publications, maintained a website, advocated in Washington DC for better pain care, and raised funding needed to support all of the efforts.
Growth of APF continued in the following years. In early 2006, APF — which was under the direction of Will Rowe at the time — became one of our first Affiliate Organizations at Pain Treatment Topics. There also was another organization somewhat similar to APF, the National Pain Foundation (NPF). When the NPF ceased operations in May 2010, the American Pain Foundation assimilated NPF assets, including its website; so, APF grew further.
Consumed by Caring
If the APF could be faulted on anything, it was in its dedication to caring so much about the plights of persons with pain that it may have overextended its reach. There was always a new challenge to confront, not the least of which were changing federal and state policies that threatened to impede access to reasonable and appropriate medical care for persons struggling with pain. This led the APF to develop an ever expanding list of projects and services.
On more than one occasion we noted to Will Rowe and staff that it was becoming difficult to find one’s way around their labyrinthian website, where it seemed there was a new or different program to be discovered with every mouse click. Although everyone involved with APF was tireless in their efforts and dedication, there was always the problem of funding such an expanding vision and associated projects.
Apparently, financial resources finally fell short. Will Rowe left the APF early this year and, despite strenuous efforts to curtail expenses in recent months, our understanding is that it became economically unrealistic to continue the organization in a fiscally sound manner. Why operations were discontinued in such an abrupt manner, especially the website presence, has not been made public.
Continuing the Mission
In its departing message, the APF urged readers, “[it is] critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur. Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem.”
There are still many specialty organizations serving persons with particular pain disorders. However, there are few broad-based advocacy organizations like APF remaining to carry on the fight to dismantle the barriers that impede access to quality pain care, and to educate, support and advocate for people affected by pain. Two such organizations — which also are Pain Treatment Topics Affiliates — are:
- The American Chronic Pain Association: go to http://theacpa.org/
- U.S. Pain Foundation: go to http://www.uspainfoundation.org/
The need for these organizations has never been greater, with 100+ million American adults suffering recurring pain of some type, according to current best evidence. If even a small percentage of those persons with pain had donated a dollar ($1 USD) to the American Pain Foundation, we would not be writing this UPDATE. That is something to keep in mind when visiting the American Chronic Pain Association and the U.S. Pain Foundation — those organizations need your support.
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6 comments:
When I read the email from APF last night, I was stunned. They have been such an important resource for me as a pain patient over the last several years. And I've been pleased to have them acting on my behalf in Washington during a time when we pain patients have needed them more than ever.
I'm curious -- and concerned -- about what connection APF's abrupt disbanding has to do with the letters from a congressional investigation APF and other pain organizations received yesterday as reported in this Washington Post story. The irony that Max Baucus and Chuck Grassley -- two of the biggest recipients of pharma money on Capitol Hill -- are "concerned" about pharmaceutical companies funding an advocacy organization (companies that also fund pain-topics.org) is not lost on me.
In trying to make sense of this, I also happened to read that ProPublica "investigation" of APF from last December which supposedly helped lead to this Senate investigation of pain organizations. What a disappointment from an organization that is supposed to be one of our best sources of journalism. The story was riddled with errors ("little evidence that narcotics help with chronic pain"), took APF materials out of context, and seemed to find it sinister that the APF was an effective lobby on behalf of pain patients. Just shockingly awful journalism.
All in all, this is one more sad and worrying event in a long line of sad and worry events. :-(
Thank you, Michelle, for your comments above. Yes, these are, indeed, sad and worrying events. I didn’t mention the ProPublica articles last December or the Senate inquiry announced yesterday because, according to my information sources, those were not major influences on APF’s decision --- granted, the timing of Will Rowe’s departure from APF and, now, this demise of the organization seem awkward. Furthermore, accusations of industry funding unduly influencing individuals or organizations in the pain field, as mentioned in news reports, are unsubstantiated by any valid evidence that I have seen or heard of. At most, the allegations hardly rise to a level of reasonable suspicion and, hopefully, more rational and judicious thinking will prevail in the end.
Thank you for your contribution and communication on a topic that impacts millions and millions of us on a daily basis. I, as I would assume there are many reading this article, welcome direction for communicating as our own lobbyist on this topic....
Without pain control intervention I, and so many like me, would not be alive today. Chronic pain is unrelenting in the world of those who really are in need, making life seem cruel and inconsequential. I have actually been denied the care I need in Washington state, making it necessary to travel to another state for help. With this closure of make me feel like those of us who really suffer are being abandoned by the roadside by politics and by many in the medical community who are just plain calloused to those who suffer on a minute-to-minute basis. Sad indeed.
I did not support the American Pain Foundation because it appeared to me that they were trying to please and placate all stakeholders at the crossroads of the "war on drugs" and the internationally recognized human right to be free of torture. By attempting to do this, I believe they failed to advocate with the urgency and courage that is needed to face the rapid demise of pain relief to the scientific and medical standard of care as well as the menace of the intrusion of governmental agencies into the doctor-patient relationship. If I would have heard at any point in my subscription to APF materials the strong language expressed in their "good-bye" letter, it would have dramatically changed my willingness to financially support their enterprise. It seems to be, as Dr. Leavitt posts above, a very sad case of the loss of crucial communication to key stakeholders among an overwhelming forest of less critical information and a less than sharp focus on the impending threat of an immoral blockade of opioid treatment to millions of law abiding citizens who happen to have "politically incorrect" severe pain not caused by a tumor.
When I read my email from the Pain Foundation, about it's closure, I felt a pit in my stomach for days. Just knowing that they existed, that I could find information I needed....anytime, made me feel more human, cared for, and listened to, than most doctors ever have. When I hear or read people saying that the Pain Foundation was a "pro-opioid" foundation, it is ridiculous. I actually read something that a med student wrote on a blog, and he referred to the Pain Foundation as that place that thinks everyone should get opioids, even for a minor scratch. This stupidity, coming from a future doctor, is terrifying. Wen did we become a society that thinks it's okay for people to live with incapacitating pain, with no effective treatment? When someone has been in such pain, that everything else ceases to exist, they cannot sleep, eat, function, dress, care for their family.... That person shouldn't be able to receive pain treatment? That's what severe chronic pain can do (and much worse). The Pain Foundation understood that. They cared, they believed that patients who suffered from severe chronic pain, were still human
beings, who deserved respect, dignity, and proper medical care. The Pain Foundation knew that the effects of untreated and under treated chronic pain, were devastating not just to the sufferer, but for their families, loved ones, communities, employers, and friends. The loneliness and despair of being in constant pain, is like nothing else. It is torture, pure and simple. The Pain Foundation knew this & wanted to do something about it. Without them, life will become even MORE difficult for people in pain, and THAT is a disgrace....
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