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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