The news about narcotic painkillers is increasingly dire: Overdoses now kill nearly 15,000 people a year, more than heroin and cocaine combined. In some states, the painkiller death toll exceeds that of car crashes.

The head of the Centers for Disease Control and Prevention has declared the overdoses from opioid drugs such as OxyContin an “epidemic.” And a growing group of experts doubts that they work for long-term pain.

But the pills continue to have an influential champion in the American Pain Foundation, which describes itself as the nation’s largest advocacy group for pain patients. Its message: The risk of addiction is overblown, and the drugs are underused.

What the nonprofit organization doesn’t highlight is the money behind that message.

The foundation collected nearly 90 percent of its $5 million in funding last year from the drug and medical-device industry and closely mirrors its positions, an examination by ProPublica found.

Although the foundation maintains it is sticking up for the needs of millions of suffering patients, records and interviews show that it favors those who want to preserve access to the drugs over those who worry about their risks.

Some of the foundation’s board members have extensive financial ties to drugmakers, ProPublica found, and the group has lobbied against federal and state proposals to limit opioid use. Painkiller sales have increased fourfold since 1999, but the foundation argues that pain remains widely undertreated.

The group says industry money has had no effect on its advocacy.

“I’m convinced with every shred of my body that our interest is improving the lives of people affected by pain,” said Will Rowe, the foundation’s chief executive, “and we want to do that the best way we can.”

The problem isn’t opioids, Rowe and other group leaders say. It’s poorly trained doctors who prescribe them too easily or in excess.

Yet critics say the Baltimore-based foundation is making it harder to address a major public health problem.

“If you were a drug company, wouldn’t it be smart to make it look like you had a patient-oriented group?” said Gary Franklin, a Washington state official who tussled with the foundation over new restrictions on high-dose painkillers.

Its funding makes the group “one and the same” with the pain industry, Franklin said.

ProPublica’s review found that the foundation’s guides for patients, journalists and policymakers play down the risks associated with opioids and exaggerate their benefits. Opioids, derived from the opium poppy plant, reduce the perception of pain by attaching to opioid receptors in the brain, spinal cord and elsewhere in the body.

Some of the foundation’s materials on the drugs include statements that are misleading or based on scant or disputed research.

The group’s board includes some patients, but also doctors who are paid to speak and consult for drug companies, a researcher whose clinic has relied on their funding for survival and a public-relations executive whose firm represents them.

Last year, one board member was the lead author of a study about a Cephalon drug. Cephalon sponsored the study, and its employees were co-authors. The study found that the drug, Fentora, was “generally safe and well-tolerated” in non-cancer patients even though it is only approved for severe cancer pain.

Andrew Kolodny, a New York psychiatrist who heads Physicians for Responsible Opioid Prescribing, said the foundation has built credibility with politicians and regulators who might not be aware of the extensive industry ties.

“I don’t think they realize that in many ways the American Pain Foundation is a front for opioid manufacturers,” Kolodny said.

Rowe, however, said that with scant options to treat chronic pain, opioids have made the difference between days and nights of agony and a return to productive life for millions of patients. Critics, he said, have a hard time understanding that these patients are willing to risk serious side effects to gain relief.

“Policymakers can go to bed at night and say, ‘Well, I protected society’ ” by restricting access to a risky painkiller, Rowe said. “The person with pain or the person with cancer could say, ‘You know, I’m sorry. I’m living with this, and I want to take this chance.’ ”

In the late 1980s and early ’90s, physicians who cared for pain patients excitedly embraced opioids as a low-risk treatment for suffering.

Many doctors, especially those providing primary care, had long ignored pain as a condition that warranted its own treatment.

But in recent years, pain doctors split. Some began decrying the increasingly widespread use of opioids and questioned whether the drugs worked. Others, like the foundation’s leaders, said the drugs were being unfairly maligned, making pain patients feel like criminals and discouraging doctors from prescribing them.

Despite the debate, sales of the drugs have skyrocketed.

Last year, $8.5 billion worth of narcotic painkillers were sold in the United States, according to the prescription-tracking company IMS Health. Enough of the drugs were prescribed last year to “medicate every American adult around the clock for a month,” the CDC said.

Some of the pills have become household names: Vicodin, Percocet, OxyContin. On its own, OxyContin, an extended-release painkiller, accounted for $3.1 billion in sales last year, up from $752 million in 2006, according to IMS Health.

“Right now, the system is awash in opioids, dangerous drugs that got people hooked and keep them hooked,” CDC Director Thomas Frieden said in a recent news briefing.

Today, the American Pain Foundation’s website offers publications for patients, policymakers and even journalists. Each depicts the benefits of opioids, and each is underwritten by the makers of those drugs.

Its patient guide, paid for by four companies, discusses several treatments for pain. It says such pain relievers as aspirin, ibuprofen and naproxen commonly cause gastrointestinal bleeding or ulcers, delay blood clotting, decrease kidney function and could increase the risk of stroke or heart attack. And it warns patients to use these pain pills at the lowest dose and stop them unless clearly needed.

The side effects of opioids, on the other hand, are minor, and most go away “after a few days,” the foundation’s guide says. Patients, it says, shouldn’t worry if they need more of a drug. They are not developing an addiction.

“Many times when a person needs a larger dose of a drug,” the guide says, “it’s because their pain is worse or the problem causing their pain has changed.”

Another guide, written for journalists and supported by Alpharma Pharmaceuticals, likewise is reassuring. It notes in at least five places that the risk of opioid addiction is low, and it references a 1996 article in Scientific American, saying fewer than 1 percent of children treated with opioids become addicted.

But the cited article does not include this statistic or deal with addiction in children. “I would much prefer that they would put in there something that could be substantiated by a real reference,” said Leonard Paulozzi, a CDC medical epidemiologist specializing in drug overdoses.

A recent report by the National Institute on Drug Abuse said estimates of addiction among chronic pain patients using opioids range from 3 percent to as high as 40 percent.

Rowe, the foundation’s chief executive, acknowledged that some of its publications need updating. He pointed to additional materials on the group’s new PainSAFE website, which includes a broader description of the risks. But the foundation continues to post outdated guides and even refers to them in newer materials.

The foundation doesn’t just offer advice about opioids; it takes its arguments into court.

In 2005, it filed a friend-of-the-court brief in the U.S. Court of Appeals for the 4th Circuit in support of William Hurwitz, a pain doctor in Virginia who had been convicted on 50 counts of drug trafficking.

The doctor had been accused of prescribing a single patient as many as 1,600 Roxicodone pain pills in one day. Hurwitz allegedly had prescribed that patient alone more than 500,000 pills between July 1999 and October 2002.

The pain foundation and its allies argued that the jury instructions in the case didn’t distinguish between criminal behavior and mistakes by a well-intentioned physician. “It is not drug dealing to prescribe opioids to patients that might be ‘suspected’ addicts or substance abusers,” the foundation and two other groups wrote in a brief.

Rowe said the foundation intervened in the case on principle, fearing the drugs would be “demonized.” The appeals court threw out the conviction, but Hurwitz was retried and convicted on 16 counts of trafficking.

Years earlier, the foundation opposed several pain patients who had sued Purdue Pharma in an Ohio county court for 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 be fearful of prescribing opioids.

Ohio was plagued by “opiophobia,” according to a brief authored by the foundation and two smaller pain nonprofits.

The Ohio Supreme Court decided in 2004 not to allow a class action.

In a separate federal case in 2007, Purdue pleaded guilty to misbranding OxyContin “in an effort to mislead and defraud physicians and consumers” and agreed to pay $600 million in penalties, according to a statement from prosecutors. Three top officials also pleaded guilty to misdemeanors and agreed to pay $34.5 million.

Two months after the conviction, however, then-foundation chairman James Campbell praised Purdue in a statement to a U.S. Senate committee.

“I believe Purdue and its management deserve recognition for their contribution to the welfare of these many patients,” Campbell wrote. Prosecuting the executives, he wrote, sent a “chilling message to those who dare to develop high-risk drugs for important diseases.”

The foundation routinely weighs in on state and federal debates over how to regulate painkillers. But although its officials blame poorly educated physicians for the growing problems with opioids, it fought against a 2009 suggestion by the Food and Drug Administration that doctors be certified to ensure they understood the drugs’ risks.

The FDA backed off. Such education remains voluntary.

Missing from the American Pain Foundation literature is any suggestion that the drugs don’t work for many chronic pain sufferers.

Recent editorials in medical journals and scientific reviews cite little evidence of long-term benefit.

Most of the clinical trials for opioids to treat chronic pain “were small, lasted less than 16 weeks and excluded patients with a history of substance abuse, psychiatric illness and depression, who are at increased risk for opioid misuse and abuse,” three physicians wrote in an editorial this year in the Archives of Internal Medicine.

“How can a therapy be considered if there’s no evidence that it works and there’s evidence of lots of side effects?” Mitchell Katz, one of the authors and director of the Los Angeles County Department of Health Services, said in an interview.

Rowe said he knows plenty of patients for whom the drugs work, “and their lives are together because they use them.”

The foundation board’s chairman and president, Scott Fishman, is stepping down at the end of the month. In a statement to ProPublica, he said that his views have evolved and that he now believes opioids are overused and addictive. But he defended the group.

“I have not always agreed with APF positions and have had disagreements with some APF leaders and patient advocates about many issues in pain management, including the appropriate place of chronic opioid therapy,” wrote Fishman, chief of pain medicine at the University of California at Davis.

“Nonetheless, I have always believed that patients in pain in the United States need strong patient advocacy, which APF has offered.”

Weber and Ornstein report for ProPublica, a nonprofit investigative newsroom in New York City. A longer version of this article is available at www.propublica.org.

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43 Comments

  1. This is what happens when you allow anomonous donors, non-disclosure, and you call corporations people. We need to make all lobbying illegal, and/or not allow congress to meet with anyone outside their district to assure they are representing their state’s interest, not some out of state corporation with lots of money to spend on influencing elections. The politicians would never let it happen though, they are getting rich in spite of the bad economy. They can be assured of a good paying thank you job when they get done, even if they are ousted.

    1. Where do we start? The system is broken but nobody wants to fix it. They all argue over who’s fault it is rather than try to fix the problem. Until there is a group in power that represents the average working class, we don’t stand a chance. We can’t send our millionaires to represent John Doe who makes $40,000 per year. 

    2. Or a nice cushy pension which is the equivalent of their “salary for life” — and it goes to their spouse on their death.  Their medical plan continues … oh, and I guess they get lifetime passes to the barber shop and salon on Capitol Hill.  Ridiculous!!

  2. It seems that the all mighty dollar is the ultimate goal of Big Pharma.

    In recent news articles it has come to light that there are a lot of drug shortages in hospitals. These drugs include critical medicenes for Cancer patients. They have been bought and hoarded by outside groups who have in turn jacked the price 500!%.

    Big Pharma would have us believe that the human body doesn’t have to feel anything. Does anyone in their right mind think that a certain level of pain is a built in warning for the human body to stop doing something? Or that there is a problem?

    I wonder how much influence Big Pharma has exercised on our school systems to turn them into ritilin dispenseries.

    1. In many cases it’s not about the person stopping something that is causing pain ie, types of exercise or physical labor….there are medical conditions that cause chronic pain, or for someone like myself who has been in a couple of car accidents and in constant pain from old injuries. I’m not on any of these kind of drugs, but I have taken them before. 

      I do agree with some of your other points though, especially about the Ritalin.

      1. I agree there are times when people are stuck with a real chronic pain. I am probably jaded by haveing worked in the jail system. I witnessed entirely too many whose sole pupose seemed to be getting pain meds. I’m talking about people who had no problem using he exercise equipment, and playing B Ball, etc. Yet when the Dr. was in the house, you would think they were on deaths door. The instant transformations were amazing and somewhat humorous.

        Todays society seems to be convinced that there is a pill for everything. Real or imagined. If there isn’t enough evidence of a condition, big pharma will invent one that requires their pattented feel good pill. Which it seems will cause side effects that big pharma has a pill to counteract those side effects. Which also has side effects. etc. etc. The next thing you know your doctor realizes that they have created a monster and try to wean you off your cornicopia of meds. Which results in you going shopping for another doctor who is more sympathetic to your conditions.

        I sympathize with those who do have real chronic pain and am frightened that the pendulumn will swing too far back and put you in more pain.

      2. Ritalin and similar drugs and what they’re prescribed for are an entirely different situation than chronic pain.

    2.  “Big Pharma would have us believe that the human body doesn’t have to feel anything.”

      Large does opiates like the ones mentioned are not given to people with a bo bo. They are for those with CRONIC pain. There is a massive difference. Those with CRONIC pain must have these drugs to function they do not take them to get “stoned” juts to relieve pain. The problem is that those that take these get used to them so they need to change the drug they take every so often and the dose gets larger over time as well as they get used to it. Then some get bad reactions to some pain meds so they continue with the one that does not effect them so they keep upping the dose every so often some faster then others.

      1. True those who have chronic pain need relief and should get it, but if they are continually arrested for selling prescription drugs, or found to possess drugs they don’t personally have a prescription for, they shouldn’t be able to continually get them (IMO).

        Those who abuse and deal prescription drugs are not difficult to find – honest, and that includes the legal drug peddlers who bring all sorts of ‘enticements’ and ‘freebies’ to doctors in hopes of getting them to peddle their wares for them.

      2. Let’s face facts. The people that concern almost everyone are those who are faking their pain. They are going from doctor to doctor getting as many prescriptions as they can get. They know all the symptoms to present and have probably networked with others who know which doctors to go to and which pharmacies don’t look too closely at the prescriptions when filling them out. There obviously is a national problem with these opiate drugs. If you don’t recognize that, then you have more than chronic pain problems.
        These Doctor shoppers, are not suffering from chronic pain. They are selling and using these drugs illicitly.

        Yes there are people who have true chronic pain. But I would bet that in Washington County alone there are enough oxicotin pills available on the street to medicate everyone in the county.

    3. Obviously you’ve never experienced chronic pain or have lived with someone who has.  If you haven’t, may you continue to do so.  If you have, you and your macho attitude must be a real joy to live with.

      1. I have had pain. Not what I considered chronic. I have had surgery’s where I was given prescriptions for percocets when I left the hospital. They obviously were oblivious to the fact that I hadn’t taken any pain meds for 4 days prior to release. Not because I’m macho. I didn’t need them.

        I have witnessed plenty of people who claimed chronic paine. Too many of whom seem quite capable of exercising on gym equipment. Who claim they can’t sleep at night due to pain but have no problem sleeping half the day away. If you would like to see these things, get a job at any jail in this or any other state. Nothing macho about it, just normal.

        By the way, I do know people who have real chronic pain and they do have my utmost sympaty.

  3. The pain pill industry has done enormous damage to the State of Maine.  The unregulated, unlicensed drug dealers that work for pharmaceutical companies are no different than the drug dealers we read about every day in this paper.  Except that they are not going to prison.  Perhaps they should be.

    1. I once spoke with a man who was a drug rep that sold oxycontin. He told me that Maine was targeted for heavy distribution of the drug and he was made to tell doctors that it was safe and not addictive. He received large bonuses when he exceeded quotas and docs got nice “gifts” based on their level of script writing. I told him that was straight up drug dealing and he agreed. His own brother had died of an overdose!

    2. Never going to happen. (them going to prison) Big pharma has adequately greased the wallets of the sheisters who make the laws.  Its all about the pay-ola. As long as the state is getting it’s cut,they dont care what you do.

  4. In fact, under new health care reform your health insurance company will no longer be allowed to cancel your policy if you get sick, we should be doing this already! search online “Penny Medical” it is a good place to find insurance if you have illness like me.

  5. The old two edged sword.  I did heavy manual labor all my life and suffered with severe lower back pain.  My Dr.s refused to prescribe even mild pain killers other than ibuprophen or tylenol.  Which caused me all kinds of gastro intenstinal problems.  I had to take pills to conteract the pills I was takeing. 

    Now I am dying of small cell carcinoma which is spread all through my body, lungs, adreanal glands and my brain.  I am in severe pain daily and still am only prescribed the absolute minimum of pain killers.  Which leaves me in constant pain. 

    I am 56 years old and my prognosis is about 6 months to live.  Do they really think I am going to become a drug adict?  When you really need pain medication Dr’s are truly afraid to prescribe an apropriate dose of pain killers for fear of losing their license to treat pain with proper dosage.

    1. I’m sorry to hear of your situation.

      You are the type who SHOULD be getting the drugs.  You are the person the drugs were originally made for.  Then came insane marketing and profit, profit, profit.Now, they are used for everyday aches and pains, and the ‘average joe’ is conditioned to believe that they are going to die without them.The doctors are pretty much screwed either way.  If they don’t adequately manage their patients’ pain, they get dinged.  If they over medicate, they get dinged.  It’s a thankless situation.

      I hope you find a decent doctor who is sensible. Hospice services may be what you need to look for.

      1. Thank you Sassy.

         I am enrolled in hospice service and am getting a little better pain management Than with the Veterans Administration but still if I report a 3-4 out of 10.  10 being agony they feel it is adequete relief.  3-4 to me is like a major headache all over my body. 

        It seems to be one way or the other with the doctors.  Either they over prescribe for people who really don’t need it of they under prescribe for those who do.  It is a no win situation.  And I do feel bad for the ethical Dr’s who try their best yet live in fear that they may lose their livelyhood.  

        1. In the pain management scale for the VA a  3 or 4 is minimal pain like a mild headache. It is not a major headache all over your body.  You need to more accurately number your pain to get adequate control.  Actually a  7 is agony.  As an RN and a chronic pain sufferer I do understand what you are going through.  I have a signed contract with the Interventional Pain Clinic at my VA and undergo random drug screening to make certain I AM taking what they give me and they also check with the State’s pharmacy records to make certain I am not getting medication from any where else.
          I would also like to mention states like Florida where the doctors  set up “pain clinics” and then prescribe outrageous amounts of medications. In the state of Florida more narcotics are written for than in all the other 49 states combined.  Vanguard recently did a documentary on it and it is where people go to and get all the narcotics like Oxycontin that they return home and sell on the street.

          1. How sad that you have to prove yourself innocent for true pain relief.  

            I suffer from chronic pain issues as well (many times during this time of the year aching and stiffness keep me up half the night).  I am fortunate to be able to manage it somewhat through diet (no foods that make me swell) and exercise, but I can certainly image that my day of getting a prescription to be able to function will be coming sooner or later.  I’m saving it as the last resort. Currently I rotate through the OTC pain relievers because if I take any one of them for so long, they stop working. Swapping them out periodically seems to be of some benefit for me anyway.

            Thank you for mentioning the Fl connection.  I often wonder how many of the street prescriptions originated from there (and other states).

            Why is it we can track a E-Coli hot dog through 50 states, but we can’t seem to pinpoint where an illicit street drug supply is coming from?  I’ve got a good idea why, but there’s very little one can do about it, so I’m not even going to bother to go there.

          2. Reading your reply to mangosmum I fully understand your situation.  Her description of a 3-4 pain level makes me understand that most of my life I have suffered about that level.  I worked since I was 15 as a commercial fisherman, heavy laborer, and truck driver and worked through lower back and pain in my hips at about that level.  Using like you nothing or OTC pain relievers. 

            I would advise you to be careful about developing a high tolerance for pain.  I think that is why I did not discover that I was in an advanced stage of small cell carcinoma, adrenal glands, brain, and lungs before I resorted to getting major testing with the VA to find out what was wrong with me.

            Big pharma and huge profits prevent tracking of illegal drugs.  Although it is a two way street.  Without the profits research would suffer and those who need powerful pain relief would have to go without.  The only question is how much profit is enough profit… Would it be constitutional for the government to regulate profit and production?  If so where would it end?  Pharma?  Medical billing?  Even down to how much they could charge for a can of veggies at the store?

          3. Thank for the information. I guess I will have to have a talk with my Doctor and nurse as to grading my pain.  I am with the CHCS Hospice care since Chemo and Radiation made me so sick I felt the possibility of a short prolonging of life was not worth it.  I decided that quality of life was more important to me than a little extra time. 

            I have chosen home care since travel to Togus is too time consuming and painful.  I also have a nurse who visits once a week and does a medication count to be sure I am taking my pills on schecule. She hasn’t said so but I am sure she reports to the state. 

            I have read in the national news about the pain clinics in Florida it is situations like this that makes it so hard for seriously ill people to get some relief for their ailments. Shamefull.

          4. Thanks for your reply.  I pay attention to any changes, and I have yearly physicals and/or tests to determine if there is anything off going on.

            I’m fortunate enough to have access to health insurance – otherwise, I’d be self-medicating exclusively.  My parents were not so fortunate.

            As far as Big Pharma, I think most people would be surprised how little actually goes into research now.  A lot of times, off-label treatments for other conditions (than what the drug was originally for) is all the research that gets done. 

            They’ve clamped down on marketing expenditures since this article was written in 2008 (which remain ridiculous despite this IMHO) but they still spend too much vs. research IMO.

            http://www.sciencedaily.com/releases/2008/01/080105140107.htm

  6. So is the American Pain Foundation to responsible medicine what the Hermitage Foundation is to liberty and democracy ? 

  7. How can anyone who believes in Free Enterprise/Free Markets object to the sale of pain killers, after all making a buck at any cost is what make this country great. There is no need for regulation, companies will regulate themselves government meddling will only make things worse. Right?

  8. Interestingly, a recent survey reveals that most of the addicted pain killer patients begun taking the medicines under medical supervision only. Pain killer addiction is mostly occurs with the chronic pain patients. They feel need of the pain killers extremely whenever the pain is little more than tolerance. The quick action pain relievers strike on the pain in the right manner. These are no doubt fast relief options by relaxing a patient considerably. While doctors believe any sort of addiction is more psychological, pain killer addiction is mostly for chronic pain management.

    Findrxonline.com/blog

  9. I evny Candian Health Care system! Even look at the meications in new Brunswick that are 50 -75% less – this should anger EVERYONE!

  10. You mean people that make things do stuff to get you to buy it? I never hard of such a thing. Name ONE product maker that does not do the same thing! There are none.

  11. Lots and lots of genuine addicts up here in Washington County.  And they pay for their fixes by stealing from others, just like other addicts.

    Big Pharma made the Oxys so they’d fit perfectly into human body receptors so, once addicted, people’s bodies crave the substances forever.

    Why not require them to number each and every pill in sequence and distribute them to pharmacies in tubes of, say, 25 pills which the pharmacist would be required to keep track of so that any pills found being used illegally could be traced back.

    There are lobbyists in Augusta from Maine law firms who lobby the Legislature to allow those drugs to keep pouring in here. 

    Truth is that natural opium, derived from a certain kind of poppy, is easier for people to get off if they’ve become addicted than the pharmaceutical companies’ specially built-for-humans pill.

  12.  The view that smaller government is better is highligthed in how ruthless these companies are with our health, water, air, mortgages etc.. I want our government to work for the people.   America needs a strong government with strong regulations that cannot be bought by big business!

  13. The big PHARMA,  knowingly and willingly, produce and sell these highly addictive opioids with full intent to increase their market through repeat customers, this is the American way of capitalism.  This is an easy product to market and the profits are phenomenal.  People beg, borrow and steal to acquire these drugs, but mostly they steal and give the money to the Drug company trafficking in death.
     
    I think this is an attempt to destroy our country from within as a terrorist attack.  These drugs are causing so many problems that our jails are full to over capacity.  Our courts, cops and corrections are the only growth industries in Maine requiring more and more money from people to pay for the service. Families are destroyed, children are abused and neglected, more foster homes, more homeless shelters, more treatment centers, more for the hospital administrators, doctors, nurses and Drug companies. 

    Do you really know who is behind this conspiracy?  It is a most effective wartime stategy.  They are winning.  Why aren’t the Attorney’s General  doing anything to protect the common welfare? This is a sad time of decline for our country. May God help us.

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