Eighteen years ago, when she was in her early 30s, Cindy Steinberg severely injured her back at work when an unsecured filing cabinet and the cubicle walls stacked behind it fell on her. Although the diagnosis for the product development manager at a learning-technology company just outside Harvard Square was torn ligaments and damaged nerves — between thoracic disc levels 7 and 10 — it took five years for doctors to find an effective combination of treatments for her chronic pain, including an opioid pain reliever called Lortab, which is similar to Vicodin. “I was in total disbelief that I could be in this much pain and there wasn’t anyone or anything that could really help me,” says Steinberg. Doctors treated her in a “demeaning, disbelieving, dismissive, and distrustful” manner, she adds.
This dismissive attitude toward pain patients — an attitude held not just by some doctors but also by the public at large — has only gotten worse in recent years, thanks in large part to relentless publicity of cases involving illegal abuse of opioids (also known as narcotics). To put it bluntly, chronic-pain patients all too often are seen as potential drug abusers first and as suffering human beings second.
In the latest sign of this trend, in October, the US Food and Drug Administration issued a recommendation that will further restrict access to drugs like Vicodin and Lortab that contain the opioid hydrocodone. This may or may not do anything to reduce the prescription drug abuse problem in this country, but it will almost certainly hurt legitimate pain patients who need treatment.
Essentially, we’ve got the picture backward. In terms of sheer numbers, the epidemic of chronic pain is far larger than what some call an “epidemic” of prescription pain reliever abuse. The Institute of Medicine estimates chronic pain afflicts about 100 million American adults. By comparison, 16,651 people died in opioid-related deaths in 2010, according to the Centers for Disease Control and Prevention, and only 29 percent of those deaths involved opioids alone (the others involved alcohol and other drugs). These deaths occur in the context of 210 million prescriptions for opioids filled in 2010 nationwide, according to a prescription- and patient-tracking service.
Yet it’s opioids — and people who need them — that get vilified. That vilification is based on somewhat exaggerated fears of addiction. Addiction is real and horrible — but is often less of a risk than people assume. The government pegs the risk of addiction somewhere between 2.7 percent and 30 percent. Some studies show that the risk of abuse or addiction is only about 3.27 percent. For people with no prior abuse or addiction problems, the rate may be as low as 0.19 percent.
For her part, Steinberg is now off opioids entirely and uses another kind of medication for her pain. But she had no trouble with opioids while she was on them. “I took it at the same dose for 10 years with no negative side effects except for constipation. I felt no ‘high.’ I never increased my dose,” she says. “The same is true for people in my pain-support group — they don’t get high, they just get relief from their pain.” She is appalled that the government, particularly the FDA and the Drug Enforcement Administration, seems determined to scare physicians and pharmacists away from prescribing drugs that can help.
In June, for instance, the DEA won an $80 million settlement from Walgreen Co., the country’s largest pharmacy chain, for filling orders for opiods through a Florida distribution center, opioids that made their way onto the black market. That’s great, but Walgreen Co. has also tightened its rules in ways that might prove harmful.
Walgreen’s new opioid policy says pharmacists may at times have to contact prescribing physicians to discuss factors such as the expected length of therapy and the “previous medications/therapies tried and failed.” Whether this shift will help the drug abuse problem is unclear, but it is already making things tougher — and the process even more fraught with shame — for legitimate pain patients.
Because of her chronic pain, Steinberg left her original career and is now the national director of policy and advocacy at the Connecticut-based US Pain Foundation.
She has not had a minute, much less a day, since her accident without pain. Her spine is so unstable that she can’t hold herself up long; when she tries, the muscle spasms can become unbearable. So she copes. She stays upright for an hour or so, then lies down for 25 minutes, back and forth, all day long. “It gets worse the longer I am upright, sitting or standing.” She still goes to concerts at Symphony Hall, but has to lie down at intermission. When she flies, she buys two seats so she can lie across them.
There are millions of legitimate pain patients like Cindy Steinberg who do not abuse opioids. They should not be penalized by the behavior of the relatively few people who take the drugs irresponsibly.
BY THE NUMBERS
$635 billion
Estimated annual cost of chronic pain to the US in medical treatment and lost productivity
$72.5 billion
Annual direct health care cost of prescription painkiller abuse
Sources: Institute of Medicine, Centers for Disease Control and Prevention