BRUNSWICK — Recently in the Press Herald, there was a news article on a group of New England politicians looking to tighten opioid regulations to address opiate abuse, followed a day later by a commentary praising the steps taken here in Maine to address this epidemic.

Always ignored is a much larger crisis that affects 100 million people in the United States alone: people living with persistent pain (also known as chronic pain).

Given in the Institute of Medicine’s 2011 report “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” this statistic represents the extraordinary number of people being treated shamefully by the government, many health care providers and the media.

There has long been a stigma attached to persistent pain. It is subjective – it cannot be measured or observed.

Margo McCaffery, a specialist in the nursing care of patients with pain, wrote in 1968: “Pain is whatever the experiencing patient says it is, existing whenever and wherever (the person) says it does.” Her statement met with an outcry of ridicule and condemnation. Prejudice was common. Along with ignorance of pain and its treatment, opiophobia was rampant.

Even pain in cancer patients was so poorly managed, the World Health Organization in 1986 began a campaign to improve pain management in this population. This initiative was followed by the establishment of other advocacy efforts such as the Pain & Policy Studies Group at the University of Wisconsin and state cancer pain organizations.

During this period, the WHO and other groups became inclusive of all types of persistent pain. But other people began to distinguish between patients with pain from cancer and those with pain from other causes, although there is no evidence that pain is experienced differently or that interventions work differently in the two groups.

In 2000, I attended the annual meeting of the Alliance of State Pain Initiatives, and we were so excited because the new pain standards for the Joint Commission for Accreditation of Health Organizations were about to be launched.

Written by Patricia Berry (who has a doctorate in nursing) and June Dahl (a professor of pharmacology), the guidelines were funded by a Robert Wood Johnson Foundation grant – drugmakers were not involved. The standards were a way to make pain more visible and more real.

Unfortunately, making the problem visible did not improve misconceptions about acute and persistent pain and the people who experienced it. Many health care professionals just saw pain assessment as another task they had to do. Numerous providers still felt that people with pain were liars, drug seekers and so on.

And a new addiction epidemic was beginning as well. In its original form, OxyContin was easily abused, and the word of the crisis was quickly spread by the media. Although there is no evidence to support the idea that people with persistent pain are the villains in prescription-drug abuse, this became a rationale for many to feel justified in their presumption and prejudice.

Persistent pain is complex. Hundreds of different pain syndromes and diseases contribute to pain. They can’t be treated the same, and individuals respond differently to different medications and non-pharmacological interventions. What works for you may not work for me. Every pain plan needs to be individualized.

Finances get in the way as well, with both medications and non-pharmacological interventions. Many non-opioids are expensive, as are many non-pharmacological interventions, and they either aren’t covered by insurance or are covered insufficiently.

Many people with persistent pain find it difficult to locate a health care provider. A majority of providers, the general public and politicians lack education on pain and pain treatment. People who have been on stable doses of opioids for years cannot get their medications at the pharmacy. They are being punished because addicts abuse the medication that has allowed the people with persistent pain to have some quality of life.

Prejudice and stigma are running rampant once again. Anxiety and fear are commonplace, especially among those who have taken stable doses of opioids for years, who wonder: “Will they take away the medication that works for me?”

The exact number of suicides related to untreated or undertreated pain or even just living with pain is unknown – but they are occurring. Quality of life for many is poor. Persistent pain is debilitating physically and emotionally. Countless people with this affliction are now living in hell.

 

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