Pain Foundation’s Drug Money Was A Shame, But So Is Group’s Demise

Health columnist Judy Foreman

Note: This post was updated at 11:20 a.m. 5/10/2012. The original version was based on dated material. CommonHealth regrets the error.

ProPublica reports that The American Pain Foundation has shut down just as two U.S. senators are launching a probe into the heavy financial support it received from painkiller-makers. Syndicated columnist Judy Foreman, author of the upcoming book “A Nation in Pain: Healing Our Biggest Health Problem,” considers the news and its background.

By Judy Foreman
Guest Blogger

Okay, everybody, deep breath.

The US Senate on Tuesday launched what ProPublica, a generally terrific online investigative news organization, says is a probe into the makers of “narcotic painkillers” and the manufacturers’ ties to groups that advocate sane, responsible use of them. (By the way, “narcotic” is a loaded word; scientists prefer the less stigmatizing “opioid.”)

Let’s hope the Senate runs a genuinely open, fair investigation and that, in the laudable effort to examine the relationship between Big Pharma and advocacy and research groups, it doesn’t abandon pain patients who need the drugs and use them responsibly.

Out of the massive budget for the NIH, only 1.3 percent goes for pain research, even though pain is the main reason people go to doctors.

In the meantime, three thoughts. First off, what counts as an “epidemic?”

In a letter reportedly sent to drug makers by Chuck Grassley, an Iowa Republican, and Max Baucus, a Democrat from Montana, the Senate probe is necessary because of an “epidemic” of accidental deaths and addiction due to opioid pain relievers.

Government figures show there were 14,800 overdose deaths in 2008 that involved opioids (far fewer, incidentally, than from alcohol or cigarettes). And many of those 14,800 deaths, the data show, involved other drugs besides opioids. Is that an opioid overdose epidemic?

Secondly, the underlying assumption here is that if Big Pharma pays for advocacy groups or research studies, this automatically means that the advocacy groups or the researchers are tainted. Frankly, it often does. When research or advocacy is supported by Big Pharma money, it should raise red flags. But that’s also the easy, knee-jerk assessment. In truth, it’s often hard to know when the appearance of a conflict of interest is a real conflict.

Thirdly, the underlying problem is that pain researchers and advocacy groups more or less have to turn to Big Pharma for funding because nobody else has the money. The federal government, ideally, should be funding more pain research, but, aside from the fact that the government is broke, it does not hold pain research as a priority. Out of the massive budget for the National Institutes of Health, only 1.3 percent goes for pain research, even though pain is the main reason people go to doctors.

Big Pharma, obviously, is a mixed blessing. For better and for worse, we live in a capitalist system and the companies that make our drugs care mostly about profits. And they’re sometimes unscrupulous. In 2007, Purdue Pharma, the maker of OxyContin, pleaded guilty to federal criminal charges that it misled regulators, physicians and consumers about OxyContin’s addiction risk.

But it’s still a shame, I think, that one of the most valuable pain advocacy groups in the nation, the American Pain Foundation, has collapsed this week, as the Senate investigation gets under way. It posted an announcement on its website saying that it has ceased to exist, effective immediately, because of “irreparable economic circumstances.”

The American Pain Foundation did get 90 percent of its funding from pharmaceutical companies, as page 16 of its 2010 annual report shows. As a journalist trying to sort all this out, I really wish it didn’t. That’s a monstrous red flag.

But who will take up the cause of pain patients if groups like the APF disappear?

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  • Leejcaroll

    People are not interested in, or willing to, give money to a chronic pain advocacy group as they are with, say, cancer.
    Cancer, MS, Parkinson’s, etc, they understand.  Those can happen to them, chronic pain, what is that?  ‘I sprained my leg and it went away in a few weeks’ they think.  Having constant intractable, unmitigated pain is beyond the comprehension of those who have never had it or seen it in someone they know.
    We need to have an advocacy group: who else will step in?  The senate wants to investigate but not help those in chronic pain.  Words like ‘epidemic’ and ‘abuse’ are sexy, phrases like ‘horrific pain’, ‘disabling pain’, ‘constant decades long pain’ are not.
    Until the public understands the reality of this disabling condition the money will not come in.  Publicizing the reality of chronic pain requires money.  It is the perfect Catch-22.

    Carol Jay Levy

    author A PAINED LIFE, a chronic pain journey
    Women In Pain Awareness Group!/groups/111961795481256/
    The Pained Life, 30 years, and counting.
    to the U.N. Convention on the Rights of Persons with Disabilities member U.N.
    NGO group, Persons With Disabilities

  • Leejcaroll

    So saddened by this.
    It is a shame the senate has refused to act on a national pain bill that has passed the house and was resent to the senate for 3 sessions (not sure if it is till even in play).They are happy to go after those who need opiates, the media has given its imprimatur to this by repeated articles about the “epidemic”, on line, in print, and TV.  Maybe if they passed needed pain care policy act we would see this issue of illegal users and dispensers of these drugs driven out of business and t hose of us in chronic pain being treated in sensible ways that would enable more of us to reenter the work force and become productive members of sociaty.
    These senators are doing nothing but headline grabbing (they hope, it looks like) and making life even more difficult for those of us who live with chronic incapacitating pain.
    Thank you.
    Carol Jay Levy, B.A., CH.t

    author A PAINED LIFE, a chronic pain journey

    Women In Pain Awareness Group!/groups/111961795481256/

    The Pained Life, 30 years, and counting.
    to the U.N. Convention on the Rights of Persons with Disabilities member U.N.
    NGO group, Persons With Disabilities

  • Nancyobannon

    Great question. As a pain patient, I would like to clarify, that MOST people who require opioid medication to function, take it responsibly, store it safely, don’t sell it, give it away, or show any other “drug behavior”. I suffer from an incurable, genetic, connective rise disorder called, Ehlers-danlos Syndrome. I suffer fro daily, debilitating pain caused by loose, unstable joints that frequently dislocate, and subluxate. I look perfectly normal, but have a collagen defect that effects every aspect of my body. I have been diagnosed by a geneticist who specializes in connective tissue disorders. Guess what? No one cares that I suffer with incredible, life altering chronic pain. No doctors want to see patients like me. I cannot be “cured” and simply require symptom management….the worst of which is PAIN. I should not have to live my life feeling ashamed of being in pain. Foundations like the American Pain Foundation, offered support and education for people like me. When my pain is not treated adequately, I become suicidal. That’s what serious, untreated, chronic pain does….in one way or another, it kills people. In order to function as a mother, I require the use of regular, scheduled, pain medication. People like me, already have a terrible time getting doctors to listen without assuming that we are scamming them, or faking symptoms to get “drugs”. I have never been “high” on pain medication. When people take it for serious pain, it simply relieves some of the pain! I belong to a wonderful, supportive, educational foundation called the Ehlers-danlos National Foundation (EDNF,org), where I communicate (through an online support community) with other people with ehlers-danlos syndrome all over the world. Particularly, here in the United States, patients like me have a very difficult time finding compassionate, knowledgable, doctors who will help us. We are labelled as lazy, depressed, drug seeking, needy patients. Those of us who have found proper treatment are TERRIFIED by the closing of the Pain Foundation, and the current national obsession that all opioids are BAD. These medications are life saving for many of us, but more and more doctors are feeling pressure not to treat pain. What will become of people like me? Most “interventional pain management doctors” want patients to do endless PT, “non-invasive” procedures, take high dose NSAIDS (that kill more people than opioids do), see psychologists, have steroid injections, etc… That cost a TON of money, and offer no meaningful relief! They are huge money makers, and consider “successful outcomes” as getting patients off of opioids. They tell people that they will develop “opioid Induced hyperalgesia” if they take opioids longterm (very rarely does this happen, and has only been studies in RATS!). It’s a fancy buz word that is used as an excuse not to provide us with the medications we need. as soon as doctors find out you are on opioid medications, they don’t want to help you, or tell you that they hope you realize that THEY won’t be giving you any of “those drugs”. We are made to feel sub-human, weak, ashamed….WHY? Because we suffer from intractable pain, and no one wants to be responsible for treating us. It is a national disgrace, that we treat sick, vulnerable pain patients this way. Better not head to the ER for serious pain, they will tell you they don’t treat chronic conditions, and to go find your “drugs” somewhere else! The WAR ON DRUGS has become the WAR ON PEOPLE WITH PAIN! Many chronic pain sufferers are TERRIFIED of the future & that our ability to function is being threatened by an “epidemic” that we didn’t create. The American Pain Foundation understood what we go through just to be treated with some dignity! Who will stand up for people like me?

    • kay

      I agree.  I have similar issues with my health but not the same issue.  I treated my medication as you do.  Most people with pain issues are responsible.  With medication and alternative treatment I live a somewhat normal life. It is too bad lawmakers are trying to distract people from their crimes in 08 with bs.

  • Charles Ornstein

    Judy, Your column mistakenly states that ProPublica made two errors in its stories about the American Pain Foundation. In fact, our story, The Champion of Painkillers, which was published on December 23, was not in error.

    First, the Institute of Medicine report released last year said that 116 million adult Americans suffered from chronic pain. That figure, which we used in our story, was not updated by the IOM until March 2012, months after our story ran. 

    Second, at the time our story ran, Will Rowe was executive director of the foundation. He was not replaced until late January.

    ProPublica is committed to accuracy and correcting mistakes when they occur. In this case, that did not happen. A correction to this blog post would be appreciated.

    Charles Ornstein

    • kay

      All the deaths that are recorded from pain medication there is never a breakdown of what the people actually died from. Was it the pain medication or a tylenol overdose?  I often ask that question when I see all the information about fatal overdoses.  I feel young people die from both.  However, mature responsible people from my experience do not really overdose that often unless suicide is the goal.  There is a pandemic in this county with young and oxycotin!  I see it often I am a nurse. Howerver, I people are entitled to pain control!