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Journalists Bag a Big One: The American Pain Foundation

Journalists Bag a Big One: The American Pain Foundation

pain, pharmaceutical industry, Antidote, John Fauber, MedPage Today, Milwaukee Journal Sentinel, ProPublica, American Pain FoundationThe American Pain Foundation – an industry funded promoter of painkillers masquerading as a patient advocacy organization – closed its doors last week after it became the target of a U.S. Senate panel inquiry.

The action by the U.S. Senate Finance Committee and the surprisingly quick collapse of the foundation were prompted by two journalistic investigations:

The first was Charles Ornstein's and Tracy Weber's Dollars for Doctors series for ProPublica. In The Champion of Painkillers, which ran in December in The Washington Post, they describe how aggressive the American Pain Foundation has been in promoting opioids:

Years earlier, the foundation opposed several pain patients who had sued Purdue Pharma in an Ohio county court for allegedly obscuring the risks of OxyContin. The foundation filed a friend-of-the-court brief backing Purdue, arguing that the health of all pain patients would be harmed if the class-action lawsuit went forward because doctors would become fearful of prescribing opioids. Ohio was plagued by "opiophobia" according to a brief co-authored by the foundation and two smaller pain nonprofits. "Consequently many, if not most, of the state's residents had been deprived of adequate pain care," it said. The Ohio Supreme Court decided in 2004 not to allow a class action.

The other major journalistic investigation to draw the Senate's attention was by John Fauber at the Milwaukee Journal Sentinel, working in collaboration with MedPage Today. For several years, Fauber has doggedly covered conflicts of interest in academic medicine, ethical problems, the growth in pain medicine and the resulting rise in painkiller addictions and deaths. As part of his Side Effects series, in February 2012, Fauber wrote about the American Pain Foundation and other groups that promote pain pills: Painkiller boom fueled by networking:

Consider the American Pain Foundation, which has substantial financial ties to companies that make narcotic painkillers. In a patient guide available on its website, it says there is no ceiling dose for opioids as long as they are not combined with other drugs such as acetaminophen. It says the dose can gradually be increased over time if pain worsens. Independent doctors say that practice developed to treat the pain of cancer patients in the hospital or at the end of life. It should not be applied to chronic pain sufferers who are not getting their drugs in a hospital setting, said Sullivan, the University of Washington professor. A philosophy of "no maximum dose" can lead to more people on high doses of the drugs, which, in turn, can result in serious problems, including more falls and fractures in older people, respiratory depression, overdoses and fatalities, he said. "Risk goes up with dose, even if it is well done," Sullivan said.

You can see the foundation featured in a great infographic (right) that the Journal Sentinel created to go with the story. Then the American Pain Foundation posted on its website that on May 3, 2012, the foundation's board voted to dissolve the organization.

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. 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. As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions. 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.

I sent Ornstein a note about the foundation being shut down, and here's what he said:

Tracy and I believe strongly that patients do need a voice in discussions about pain and the growing number of deaths from narcotic painkillers. But the reason we focused on the American Pain Foundation is that it had such a deep dependence on the pharmaceutical industry and presented information that was, in some cases, not factual. It overstated the benefits and downplayed the risks of the drugs.

When I wrote Fauber, he responded:

It is unclear to me whether the Senate investigation or any media attention caused APF to close its doors. I think the group said its board made the decision on May 3, which may have been a few days before the Senate contacted them, though that would have to be checked. I am not saying the Senate investigation did not cause them to close, but if it did, it happened with amazing speed.

Indeed. The American Pain Foundation may be the first organization to fall, but it likely will not be the last. As Ornstein and Weber noted in their piece about the Senate investigation:

Letters went to three pharmaceutical companies, Purdue Pharma, Endo Pharmaceuticals and Johnson & Johnson, as well as five groups that support pain patients, physicians or research: the American Pain Foundation, American Academy of Pain Medicine, American Pain Society, Wisconsin Pain & Policy Studies Group, and the Center for Practical Bioethics.

Neither ProPublica nor the Journal Sentinel, as far as I can tell, mentioned the Center for Practical Bioethics in their work. But you can bet that reporters around the country are looking into the center right now. (I had already submitted this post when Alan Bavley at the Kansas City Star wrote a piece late Friday that examined some of the ties between the center and pharmaceutical companies.) What reporters may find is that the center is tied up with another topic much written about on Antidote: the ongoing troubles at the American Journal of Bioethics. I'll tell you how and why later this week.

Related Posts:

Q&A with Cathryn Jakobson Ramin: The Billion Dollar Back Pain Industry

Q&A with Dr. Daniel Carlat: Finding an independent voice in a pharma-sponsored world

Infographic credit: Milwaukee Journal Sentinel (reprinted with permission)

Comments

[...] Journalists Bag a Big One: The American Pain Foundation (Reporting on Health, May 14, 2012) “…The American Pain Foundation – an industry funded promoter of painkillers masquerading as a patient advocacy organization – closed its doors last week after it became the target of a U.S. Senate panel inquiry.The action by the U.S. Senate Finance Committee and the surprisingly quick collapse of the foundation were prompted by two journalistic investigations:The first was Charles Ornstein’s and Tracy Weber’s Dollars for Doctors series for ProPublica. In The Champion of Painkillers, which ran in December in The Washington Post, they describe how aggressive the American Pain Foundation has been in promoting opioids:.. [...]

I volunteered with APF in the capacity of a board and chat moderator and later led moderators. I was also the state representative of their Action network and more. The PainAid of APF did NOT promote narcotics in any way, shape, or form. That portion of the site was for those who were in extreme pain, like myself, to be able to communicate with others in a non-judgmental format. Personally, I don't take opioids other than a muscle relaxer. There are those who need them to function at all, though. American Pain Foundation, to me, did promote opioids a little strongly, but there were many who felt that alternatives should be looked into before any narcotic was tried. There are a majority of alternative health therapies that can and do relieve some pain for man. There are SCS (Spinal Cord Implants) which are non-opioid pain relievers (Much like a TENS unit only implanted and rechargeable), many times a combination of therapies work. I just dislike the thought that there are many who are not, for some reason or another, candidates for these treatments and they suffer trying to get relief. The old "it is all in your head" mentality is returning. YES, it is in your head. That is where the impulses your various nerves are correlated and assigned to a specific feeling.
Think well before you take away all support from us. With the loss of major sites, there is a loss of interaction with others who are in the same boat. Smaller sites either can't or won't support those forums that help you function knowing you aren't alone. You go back to that isolated feeling that dogged you until you found that support.

Who speaks for the Chronic Pain Patient now? A valid question in light of the failure of the media and the government with the demise of organization open to individuals who suffer from chronic pain. I myself suffer from bilateral RSD/CRPS of the lower extremities and am now facing the dilemma of not being able to afford the skyrocketing cost of Morphine. I have long been unable to afford the estimated $50,0000 plus expense of a spinal cord stimulator . Since my disability income exceeds the maximum income threshold for additional financial assistance in paying for my medication,yet not enough to pay for those very same medications that up until October of 2013 I was able to budget within my prescription drug benefit allowance under Part D of my Medicare Advantage Plan. However since that time the cost of just one of the two morphine sulfate (generic mind you) now is greater than my monthly budget of $200 for food, $100 for gas and $100 for prescriptions. Combined they exceed the $720.00 per month rent for an unfurnished one bedroom apartment which is not located in one of the finer neighborhoods of Mesa,AZ.
These medications allow me to with assistance with a walker or cane (depending on my pain level that day) to walk, dress myself, with effort cook my meals and shop for groceries once a month, see my pain management specialist. Without them I know at a minimum I am looking at a wheel chair and the need to have my doctor wean me off the medications within a matter of weeks.
Where are the self-righteous journalist and sanctimonious ( as well as highly compensated) politicians that should be looking after the welfare of those of us whom due to no fault of our own are unable to earn the sort of income needed to pay for these necessary medications?
Maybe organizations such as APF despite their financial ties to Pharmaceutical companies spoke more clearly and concisely for the Chronic Pain Patient than the lobbyist that represent these very same companies and influence the political powers that are embedded within Government can ever speak for those very same people who unfortunately do not have the money or power to speak for themselves.

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