Almost everything I know about chronic pain I learned while working in hospice palliative care, where pain management was one of the most important components in easing the end-of-life suffering of our patients.  But even before then, one April morning in 1983, I listened to my father’s oncologist tell our family:

 “We are reluctant to give him morphine for his pain because it’s addictive.”   

My Dad, who had been diagnosed with metastatic lung cancer, died nine hours after that pronouncement. But at least he wasn’t an addict when he died. 

Almost 20 years later when I started working in hospice palliative care, I learned that palliative care physicians refer to this pervasive reluctance to prescribe opioids for intractable pain as “The Morphine Myth”.  Most research on opioids, they explained to me, had been done on addicts, not on pain patients. They further explained that the brain’s neural mechanisms that mediate the reinforcement of addiction appear to be distinct from those involved in analgesia or pain relief. But as a result of doctors’ lack of specialized knowledge of pain management, many dying patients who lack the support of skilled palliative care providers are being essentially abandoned, forced to tolerate intolerable pain because of their physicians’ ignorance of adequate pain management strategies.

This ignorance is inexcusable in all end-of-life care, and can lead to a highly charged war between worried doctors on one side and anguished patients and their family members on the other.

But a recent article published by investigative journalists over at Pulitzer-Prize winning ProPublica exposes a unique side of the painkiller wars that has nothing to do with end-of-life pain.

The ProPublica report examines the current epidemic of overdose deaths linked to painkillers including hydrocodone (Vicodin), methadone, oxycodone (OxyContin), oxycodone with paracetamol/acetaminophen (Percocet), and oxymorphone (Opana). These fatal overdoses often involve mixing painkillers with other prescription drugs – for example Klonopin, Xanax, Valium or another benzodiazepines, which are the second most lethal class.

Three quarters of these deaths are considered to be unintentional – likely the result of overdoses rather than drug interactions or allergic reactions – and some 13% are suicides.

The report’s authors cite the Center for Disease Control’s latest CDC Vital Signs update revealing that overdoses due to opioids now kill more people than heroin and cocaine combined.

But equally disturbing is the ProPublica investigation into an advocacy group for pain patients called the American Pain Foundation*.  The group’s sweepingly generalized message:

“The risk of addiction is overblown, and the drugs are underused.”

What this non-profit group does not highlight, say ProPublica reporters Charles Ornstein and Tracy Weber, is the money behind that message.

The foundation collected nearly 90% of its $5 million funding last year from the drug and medical-device industry – and closely mirrors its positions, according to this ProPublica investigation:

“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, and the group has lobbied against legislative proposals to limit opioid use. Painkiller sales have increased fourfold since 1999, but the foundation argues that pain remains widely undertreated.

“The group also says that industry money has had no effect on its advocacy.”

Dr. Gary Franklin, a Washington state official who tussled with the pain foundation over new restrictions on high-dose painkillers, told ProPublica investigators:

“If you were a drug company, wouldn’t it be smart to make it look like you had a patient-oriented group?”

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

Ornstein and Weber explain that the American Pain Foundation harnesses the power of patient stories to sway politicians, medical boards, judges and government health regulators, emphasizing that it represents grassroots voices of patients living with pain.

Industry-funded non-profits fronting as patient advocacy groups are not in fact uncommon, as I have discussed previously here (How To Set Up Your Own Phony Non-Profit as a Front for Big Business).  Based on what some of these self-serving groups try to tell us, trans fats fight cancer, tanning beds prevent heart disease, mercury in fish isn’t harmful after all – along with many other questionable ‘truths‘ courtesy of industry-funded not-for-profit organizations that often do sound legitimate.

For example, in order to sell more of their osteoporosis drug Fosamax , the pharmaceutical company Merck hired super-sales whiz Jeremy Allen to help position Fosamax as a ‘cure‘ for the newly invented ‘disease‘ of osteopenia. His brilliant marketing plan including creating a Merck-funded non-profit in 1995 that Merck called The Bone Measurement Institute, a wholly owned subsidiary of Merck, which then lobbied government agencies to speed up approvals for new osteopenia bone density screening tests – all of which were designed to identify millions of women who would then ‘need‘ to take Fosamax.

And a 2009 New Zealand study published in the Journal of Mental Health concluded:

“The pharmaceutical industry has been shown to have a pervasive influence in the mental health field. Drug company-funded websites for patients with depression were more likely to explain mental health issues with a bias favourable to the sale of medications.”

This is all part of what we in the public relations field call stealth marketing.

Jeanne Lenzer of Reporting on Health explains that stealth marketing is frequently used by the health care industry whenever it puts its marketing messages into the mouths of seemingly independent third parties.

“In this way, the third party – usually an academic researcher, a medical school teacher, a professional association, or a patient group – lends credibility to the marketing message while disguising its hidden origin as the paid mouthpiece of commerce, not science.

“Medical ghostwriting is one example of this – in which a drug company pays a professional communications firm to write flattering articles about its products, and then gets a well-known academic to pretend to be the real author so these articles can be submitted to medical journals for publication.  Instant credibility – while disguising hidden industry origins.”

With many physicians and academics on the take from major pharmaceutical companies and medical device manufacturers (some even in unapologetic violation of established professional conflict of interest guidelines), Lenzer suggests that it can seem downright impossible to ferret out frequently undisclosed financial conflicts of interest behind industry-funded patient information that may or may not be accurate.

ProPublica’s investigation into the industry-funded American Pain Foundation, for example, reveals that the foundation’s guides for patients, journalists and policymakers play down the risks associated with opioids and exaggerate their benefits. Some of the foundation’s materials on the drugs include statements that are “misleading or based on scant or disputed research”.

Its patient guide, paid for by four opioid drugmakers, discusses several treatments for pain. It warns that pain relievers such as aspirin, ibuprofen and naproxen commonly cause gastrointestinal bleeding or ulcers, delay blood clotting, decrease kidney function and may 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.

But the side effects of opioids, on the other hand, are minor, and most go away “after a few days,” the foundation’s guide says. The underuse of opioids, it says, “has been responsible for much unnecessary suffering.”  And patients shouldn’t worry if they need more of a drug. They are not developing an addiction. The guide says:

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

Dr. Andrew Kolodny, a New York doctor who heads the activist group Physicians for Responsible Opioid Prescribing, told ProPublica that the pain foundation has built credibility with politicians and regulators who may not be aware of its extensive industry ties:

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

Meanwhile, CDC Director Dr. Thomas Frieden described narcotic overdoses in a November news release:

“Government, health insurers, health care providers and individuals have critical roles to play in the national effort to stop this epidemic of overdoses while we protect patients who need prescriptions to control pain.”

It’s important to keep in mind that stats like this are not about end-of-life pain management with opioids, where issues of addiction are carefully delineated, and doctors point out that “dependence is not addiction” when it comes to relieving intractable pain in the dying.  As the palliative care textbook Medical Care of the Dying* explains:

“Most patients on longterm opioids develop physical dependence. This refers to the fact that they are physically acclimatized to the presence of the medication, and would exhibit signs of withdrawal if they were abruptly withdrawn from it.

“Patients are also dependent on opioids in a functional way. Like the diabetic who depends on insulin to maintain regular blood sugars, the chronic pain patient requires analgesia to maintain normal daily functioning.

“However, neither of the above constitutes or should be confused with addiction, defined as a loss of control over drug use, compulsive use and continued use despite harm – an abuse of drugs that involves intentional misapplication for effects other than originally intended.”

We know, however, that people with a history of addiction issues who are also on longterm opioid painkillers for their physical pain are in a distinct category of their own. Medical Care of the Dying cites a 1996 study reported in the Journal of Pain and Symptom Management that looked at patients who had both chronic pain and substance abuse problems.  They found that 45% of these patients abused their narcotic medications, and that the 55% who did not abuse were all active in recovery programs and had good family support.

It’s been said that the ideal low-risk patient for opioids is a woman in her 70s with no history of addiction issues who is suffering from severe arthritis of the hip, but who can walk and garden with decreased pain because she is taking this painkiller.

It seems that there are a number of important trends surrounding the current use of opioids, including:

• the increasing use and sales of prescription painkillers for non-medical reasons (obtained without a prescription, specifically for the high they cause and not for effective pain management)
• the over-prescription of opioids for longterm chronic pain (an editorial in the Annals of Internal Medicine, for example, warned that while most doctors prescribe opioids in an effort to improve a patient’s quality of life, opioids should be reserved for short-term pain control only, and a recent report by the National Institute on Drug Abuse said estimates of addiction among chronic pain patients using opioids can reach as high as 4o%);

Researchers have also found that over half of opioid overdose deaths occur in people who have never actually been prescribed the drugs, and that a substantial number occur in those who have received prescriptions – but from five or more physicians (the known practice called “doctor shopping”).  These are the patients of greatest concern, according to a 2008 report in the Journal of the American Medical Association. They are the ones who seek care from multiple doctors and are prescribed high daily doses, and account for over 20% of opioid overdoses

Keeping track of that 20% who are doctor shopping can be problematic. For example, the New York State Health Department, which last year set up a state-wide database to alert physicians to patients who are abusing controlled substances like opioids or visiting multiple doctors to get those prescriptions, has found that only a small fraction of New York’s 80,000 physicians (just 2,216 docs) have actually used its Controlled Substance Information system.  As of May 2011, 48 U.S. states and one territory have enacted legislation authorizing Prescription Drug Marketing Programs like the one in New York State, but only 34 of these are actually operational.  Why is that?

Financially, there’s a lot at stake for drugmakers here – the same drugmakers who are funding the American Pain Foundation.

For example, OxyContin, an extended-release painkiller, accounted for a whopping $3.1 billion in sales last year for drugmaker Purdue Pharma (coincidentally a longtime funder of the American Pain Foundation) – that total is up from $752 million in 2006, according to IMS Health.

Prescriptions of some opioids, such as methadone, have increased more than 800% in the past 10 years.

Meanwhile, the drug industry-funded American Pain Foundation has even intervened in court cases in ways that appear to counter its stated mission. The foundation, for example, sided with its funder Purdue Pharma to block a 2001 class-action case filed by Ohio patients who had become addicted to or dependent on Purdue’s blockbuster painkiller, OxyContin.

So while the American Pain Foundation sides with its Big Pharma bosses against the very pain patients it purports to serve, the epidemic of painkiller addiction and overdose deaths continues unabated.

Consider these disturbing facts:

• In 2010, 1 in every 20 people in the United States age 12 and older reported using prescription painkillers non-medically, according to the National Survey on Drug Use and Health.

• Sales of these drugs to pharmacies and health care providers have increased by more than 300% since 1999.

• The death rate was highest among persons aged 35–54 years.

According to Gil Kerlikowske, Director of National Drug Control Policy:

“Prescription drug abuse is a silent epidemic that is stealing thousands of lives and tearing apart communities and families.”

The overriding conclusion behind all of this confusing news is that our health care providers are woefully uninformed about both adequate pain management strategies and the serious risk of opioid overdose deaths. The Journal of Advanced Nursing, for example, reported distressing results of cardiac nurses’ willingness to treat the post-op acute pain of their open heart surgery patients, even when appropriate pain meds had been ordered on the patients’ charts (November 2001).

“Critical deficits in knowledge and misbeliefs about pain management were evident for all nurses. Patients reported moderate to severe pain, but received only 47% of their prescribed analgesia. Patients’ perceptions of their nurses as resources with their pain were not positive.”

And worse – health care providers often don’t know what they don’t know.  In a more recent study reported in the Japanese Journal of Clinical Oncology, although many doctors studied thought that they were fairly well educated for pain management strategy, “a large population of physicians showed a negative attitude and inadequate knowledge status about pain management.” (April 2011)

So if these professionals are now turning to the American Pain Foundation for factual information, we may see this problem getting far worse before it gets any better.

As a heart attack survivor with ongoing cardiac issues (including the debilitating chest pain of something called Inoperable Coronary Microvascular Disease), I find myself once again getting reacquainted with the world of pain management. I now regularly see a pain specialist at our Regional Pain Clinic, where innovative non-drug options are a common adjuvant to prescription meds. These options include Health Recovery Tai Chi, Meditation, Yoga and even a Laughter Workshop.  And I now wear a portable TENS unit clipped to my belt from dawn to dusk, wired to tiny electrodes attached with surgical tape over my heart, thus confusing the pain pathways leading from my ischemic heart muscle to my brain. More on this at My Love-Hate Relationship With My Little Black Box.

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* NEWS UPDATE, May 8, 2012:  American Pain Foundation Shuts Down:   The American Pain Foundation, which described itself as the nation’s largest organization for pain patients, announced that it is dissolving “due to irreparable economic circumstances.”  The group received 90% of its $5 million in annual funding from the drug and medical-device industry, and has been the recent target of Senate investigators because of what they called “an epidemic of accidental deaths and addiction resulting from the increased sale and use of powerful narcotic painkillers.” Earlier on the same day of the shut-down announcement, Senate investigators wrote letters to the Foundation, drug companies and others suggesting  that drug companies “may be responsible, at least in part, for this epidemic by promoting misleading information about the drugs’ safety and effectiveness.”

See also:

• How to Set Up Your Own Phony Non-Profit as a Front for Big Business
• Stealth Marketing: How Big Pharma Tries to Shape Medical News
• How To Turn a Condition Into a Disease by “Selling Sickness”
• “Integrity in Science” – Who’s Paying the Piper?
• “We Never Imagined That People Would Think of Osteopenia as a Disease”

* Disclosure: I was a text editor for the 4th edition of Medical Care of the Dying, 2006.