July 1, 2011

by Heather Grace, IPJ Staff Writer

Anyone affected by chronic or Intractable Pain knows the heartache, stigma and shame often experienced. Even when speaking to medical professionals or loved ones, we are doubted, judged and sometimes even accused of wrongdoing. Why? Merely because we state our symptoms–the main one being an excruiating degree of pain that no one should ever have to live with.

Yet, far too many people suffer in silence, choosing to just ‘deal with it’ because the alternative is a long, winding hellish road… filled with anger, sadness, disappointment and grief. When the pain gets to be too much, some make the terribly disturbing choice to end their own suffering–via suicide.

It’s a story that is all too common in the pain community. And yet, this deplorable level of misunderstanding, medical neglect and unnecessary death does not exist for sufferers of any other disease.

A ground-breaking report that studied pain from many angles was released on Wednesday, and the buzz is generally positive. Will attitudes toward pain change in the not-so-distant future? Only time will tell, but it is about time that pain is seen as the devastating disease that it is.

In addition to defining chronic pain as a disease,the Institutes of Medicine’s (IOM) Relieving Pain in America notes some very important facts about pain. The two most noteworthy tidbits?

    1. Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
    2. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity—an amount equal to about $2,000 for everyone living in the United States.

IOM’s Committee Advancing Pain Research, Care, and Education reviewed literature, statistics and research; they also spoke to medical experts and members in the pain community in five cities from November, 2010 through April, 2011. The resulting report includes 328 pages of detailed Findings and Recommendations. The plan for this report? Congress will use the recommendations to revamp its approach toward the treatment of pain, in an effort to make things better for pain sufferers now, and in the future.

Some of the key findings from the report are found on page 1-9, Box 1-4:

Pain By The Numbers

  • 116 million—number of U.S. adults with common chronic pain conditions
  • $560 to 635 billion—conservative estimate of the annual cost of chronic pain in America
  • $99 billion—2008 cost to federal and state governments of medical expenditures for pain
  • 60 percent—percentage of women experiencing their first childbirth who rate pain as severe;
    18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year

  • 80 percent—percentage of patients undergoing surgery who experience postoperative pain; fewer than half report adequate pain relief:
    • Of these, 88 percent report the pain is moderate, severe or extreme;
    • 10 to 50 percent of patients with postsurgical pain develop chronic pain, depending on the type of surgery; and
    • for 2 to 10 percent of these patients, this chronic postoperative pain is severe
  • 5 percent—proportion of American women aged 18 to 65 who experience headache 15 or more days per month over the course of 1 year
  • 60 percent—percentage of patients visiting the emergency department with acute painful conditions who receive analgesics:
  • median time to receipt of pain medication is 90 minutes, and
  • 74 percent of emergency department patients are discharged in moderate to severe pain
  • 2.1 million—number of annual visits to U.S. emergency departments for acute headache (of 115 million total annual visits)
  • 62 percent—percentage of U.S. nursing home residents who report pain:
    • arthritis is the most common painful condition, and
    • 17 percent have substantial daily pain
  • 26.4 percent—percentage of Americans who report low back pain lasting at least a day in the last 3 months

The Recommendations, which are detailed starting on page S-13 of the report, are divided up between aspects that should be put into effect right away. “IMMEDIATE: Start now and complete before the end of 2012.” The others? “NEAR-TERM AND ENDURING: Build on immediate recommendations, complete before the end of 2015, and maintain as ongoing efforts.”

Immediate efforts include:

  • Create a comprehensive population-level strategy for pain prevention, treatment, management, and research
  • Develop strategies for reducing barriers to pain care
  • Support collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate
  • Designate a lead institute at the National Institutes of Health responsible for moving pain research forward, and increase the support for and scope of the Pain Consortium

Ongoing plans include:

  • Improve the collection and reporting of data on pain
  • Promote and enable self-management of pain
  • Provide educational opportunities in pain assessment and treatment in primary care
  • Revise reimbursement policies to foster coordinated and evidence-based pain care
  • Provide consistent and complete pain assessments
  • Expand and redesign education programs to transform the understanding of pain
  • Improve curriculum and education for health care professionals
  • Increase the number of health professionals with advanced expertise in pain care
  • Improve the process for developing new agents for pain control
  • Increase support for interdisciplinary research in pain
  • Increase the conduct of longitudinal research in pain
  • Increase the training of pain researchers

Overall, the approach seems like an effective plan. The execution of the plan will be the part that makes all the difference. If handled well, pain care could be revolutionalized. If led by people who are not truly knowledgeable, who let fear and a desire to prevent addiction rule their decision-making, nothing will have changed.

The future looks bright–but it won’t work unless people with pain share their stories, loud and often. Tell the IOM what you think of this report, and how you want to see pain care change. Email them at wwwiom@nas.edu.

It is time people finally knew the truth: We are not Nurse Jackies or Dr. House’s. We are, in fact, just like you or anyone… but, we cope with an unrelenting pain, every minute, every day. Don’t we deserve some real help, now, after all this time in the dark ages of pain care?

Having attended the IOM’s fourth meeting, in March, 2011, I am so pleased to see the progress made for pain sufferers everywhere. This report makes people like me hopeful, for the first time in a long time, about our future.

Testifying before the committee was my first big step into the spotlight, regarding my pain. I was outside the warm, welcoming arms of other people affected by pain. However, I was able to stand there proud, and tell my story honestly and openly. It felt great! Best of all, I was able to share with the committee some very important research from Dr. Forest Tennant, the Intractable Pain Specialist who saved my life. (This important research can be found in the article Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable.)

What did I learn from my experience? Everyone who has been affected by pain should do what they can to get involved, in this way. These days, being your own Advocate isn’t enough. If you really want to make the world a better place for pain treatment, you have to be willing to work side-by-side with people just like you, creaing a common voice for the pain patient.

How do you do this? Consider becoming a Leader with the American Pain Foundation Action Network (like I did, thanks to my wonderful friend, Radene Marie Cook!) Visit their new and improved site at http://www.painfoundation.org/get-involved. Or, fill out the Advocacy Survey now. This link allows you to join APF for free, instantly; it will also allow you to connect with local APF Leaders, so you can learn more information about advocacy efforts in your area.

Want more information about the IOM Report? Here’s a sampling of media coverage:

Chronic pain affects 116 million Americans, says IOM report
Los Angeles Times – Marissa Cevallos
Pain is more than just a complaint — it’s a public health issue. And the time has come to do something about it. So concludes a new report from the Institute of Medicine, written at the…

Report: More than 100 million suffer lasting pain
Washington Post – Associated Press
(AP) — Nearly a third of Americans experience long-lasting pain — the kind that lingers for weeks to months — and too often feel stigma rather than relief from a health care system poorly prepared to treat…

Report: Chronic, Undertreated Pain Affects 116 Million Americans
TIME – Maia Szalavitz
Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine…

Pain Costs U.S. $635 Billion a Year: Report
U.S. News & World Report – HealthDay News
Pain afflicts at least 116 million adults in the United States each year and costs the nation $560 billion to $635 billion annually in medical and economic costs, according to an Institute of Medicine report released Wednesday…

Don’t blame people for their pain, report says
CNN – blog
Chronic pain – no matter where it strikes – is a problem not many of us really understand. It can sometimes be dismissed and not effectively managed by health care professionals. Pain is widespread, but underdiagnosed and undertreated, according to a…

116 Million Americans Suffer Chronic Pain, Huge Personal And Economic Burden
Medical News Today – Christian Nordqvist
Not only does chronic pain affect the quality of life of over 116 million Americans, there is a massive economic burden too, estimated to be between $560 and $635 billion each year for the country, researchers from the Committee on Advancing Pain…

Relieving Pain in America: A new report from the Institute of Medicine
Stanford Scope – blog
The past couple of days have been hard. Struggling with work deadlines, I was also trying to comfort my sobbing six-year-old son as he suffered for hours through what seems suspiciously like his first migraine. Hands tied, I could do little except…

The yearly cost of chronic pain is excruciating
msnbc.com – Alina Selyukh
WASHINGTON — Addressing chronic pain, a hard-to-treat yet highly common condition, costs the United States as much as $635 billion a year and requires a much more comprehensive strategy for curbing lost productivity and healthcare…

Chronic Pain: 1/3 of Americans Live With It, According to IOM Report
ABC News – Susan Donaldson James
Cynthia Toussaint has reframed her life after decades of chronic pain and now helps others. For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life. Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with Complex Regional Pain Syndrome…

Chronic Pain Costs Have Skyrocketed, Report Says
ThirdAge – Emily Jacobson
Chronic pain costs the United States up to $635 billion a year, and a new government report suggests it requires a much more comprehensive strategy to make up for productivity and healthcare costs. About one in four US adults have chronic pain each…

(Thanks to Mary Bennett, APF, for the news links.)

The Institutes of Medicine’s (IOM) full Relieving Pain in America report can be downloaded for free at http://www.iom.com/relievingpain.

© 2011 Intractable Pain Journal & Heather Grace. All rights reserved.