Why are patients shut out of the debate over prescription pain medicine?

March 6
BOCA RATON, FL - FEBRUARY 04: In this photo illustration, bottles of the generic prescription pain medication Buprenorphine are seen in a pharmacy on February 4, 2014 in Boca Raton, Florida. The narcotic drug is used as an alternative to Methadone to help addicts recovering from heroin use. (Photo illustration by Joe Raedle/Getty Images)
The generic prescription pain medication Buprenorphine is used as an alternative to Methadone to help addicts recovering from heroin use. (Joe Raedle/Getty Images)

(Guest post from journalist Maia Szalavitz, author of the forthcoming book “Unbroken Brain:  A New Way of Understanding Addiction and Other Compulsive Disorders.”)

There’s been a bit of an opioid-fueled media frenzy the past several weeks, fueled by Philip Seymour Hoffman’s death from a drug overdose and hand-wringing over the introduction of Zohydro — a new prescription pain reliever that critics have described as a vector for even more opioid addiction. All of this comes after months of stories about a spike in overdose deaths that were at least partially attributable to prescription drugs. But amid all the discussion of addicts, doctors, pharmaceutical companies and law enforcement, one group of people has barely been considered: people who must live with pain.

While millions of Americans suffer severe chronic pain, their voices are rarely heard in media coverage of the “opioid epidemic.” Many stories fail to quote them at all. And when advocates for patients are heard from, the spokesperson is typically someone described as a recipient of pharmaceutical industry funding, and thereby discredited. But look at the comments to these stories, and you’ll get a different picture. Take this one from “Deb” in CNN’s reporting on the call for Zohydro to be pulled before it is even sold, because it might be misused by addicts:

You have obviously never lived with chronic, unrelenting, 24/7 pain! I’ve done the whole pain management thing following unsuccessful surgery and found absolutely nothing that has worked that didn’t involve using some type of narcotic, and even then it only takes the edge off, it doesn’t take the pain away.

Unfortunately, those who are only interested in the high have ruined the system for true chronic pain sufferers so that “pain management” doctors (who are usually under higher scrutiny) are becoming more and more reluctant to prescribe narcotics to those that really do need them.

 Or this, from “Lauri,” beneath Forbes’s article, which included no comments from pain patients and was headlined, “Is the Super Potent New Opiate Painkiller Zohydro Just Too Dangerous?”

 I want to comment on this new drug Zohydro. I am also a chronic pain patient suffering with a disease that is very painful and something I’ll have the rest of my life. When my disease is flared up the pain is compared to that of a cancer patient, and even then my pain meds aren’t strong enough to help take the pain away totally. I’ve tried everything over the last 16 years, including 100’s of meds, (opioids and non opioids,) surgeries, self catheterization, trial for electrical stimulation in back, which didn’t work.

[Eight] years ago I finally agreed to taking pain meds. But I have allergies to many pain medicines so I’m limited to OxyCodone and morphine. OxyContin works, but my insurance won’t cover it and I’m sure I’d have the same problem with thus new medicine. What I’m saying is, I’ve done everything under the sun in order to avoid going on opioids but I had no other choices.

 At one point, Lauri tried living without opioids:

 [Two] years ago my tolerance was too high so my [doctor] decided to [wean] me off all my pain meds… That was hell and I couldn’t function, I couldn’t be a mom to my children, I couldn’t clean my house. My husband would work then come home and cook and clean because I was bed ridden pretty much. So after trying a few other meds they put me back on opioids.

Other journalists who take the time to ask pain patients for their perspective can get overwhelmed with dozens of heartbreaking stories of suffering.

The media also give a false impression of the role of pain treatment in causing opioid addiction.  While most coverage includes anecdotes about people who became addicted during medical opioid use, the research shows that most opioid addicts actually start as street users and were never pain patients at all.

For example, for years the National Household Survey on Drug Use and Health has asked thousands of Americans about their misuse of prescription drugs, and the sources from which they get their supply.  And consistently, the answer is that at least 80 percent are not pain patients who were medically addicted:  two out of three either get opioids for free or buy them from a friend or relative. The rest obtain the drugs either from dealers, by theft, by prescription forgery or online.

A recent study published in the Journal of the American Medical Association found that among the most frequent opioid misusers, a full third get the drugs from doctors — but this suggests that preexisting addicts are seeking pain doctors to get drugs, not that pain treatment is turning people into addicts. Indeed, two-thirds of the heaviest prescription drug users are not seeing doctors to get their drugs at all.

If you look at the problem from the other direction — considering the proportion of pain patients who get addicted during treatment, again the numbers are far lower than the media commonly suggest.  A review of the literature by the highly respected Cochrane Collaboration found that less than 1 percent of patients without a prior history of addiction become addicted during long-term opioid treatment for chronic pain. The review collected data from nearly 5,000 patients.

Here, too, the media can be one-sided.  For example, reporting on a 2012 study which found that over 100 million Americans are afflicted with some kind of chronic pain, ABC News stated as fact that “Powerful painkillers like vicodin or percocet relieve pain but aren’t intended to treat patients long-term.” Some doctors certainly take that perspective — but if it were the consensus in medicine, there wouldn’t be enough data for a Cochrane Review on the issue, let alone one that tentatively concludes that such treatment can be effective.

Opioids are clearly a highly contentious subject and there are certainly cases where they are prescribed too readily and made too accessible for recreational use. But the data suggest that most of these opioids are not being prescribed for chronic pain patients. Otherwise, doctors themselves would be directly supplying a far larger proportion of the opioids used by addicts.

Policymakers and anti-addiction advocates now want to suppress opioid use, and to impose even greater restrictions on people who live with chronic pain. This isn’t going to address the addiction and overdose problem. Studies are now showing that when opioids aren’t as available and prices go up, addicts just switch back to street heroin.  Pain patients, however, simply suffer. Their plight shouldn’t be an afterthought and shouldn’t be relegated to comments sections to stories that failed to consider their perspective. They are a crucial part of this story.

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