Founder of the American Chronic Pain Association and Pain Awareness Month

What led you to establish Pain Awareness Month in 2002?

“My goal has always been to reach at least one person living with pain and give them hope.”

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Penney always wanted to draw more attention to the issues faced by people experiencing pain, such as access to care and stigma. She wanted people living with pain to be seen as people, just like anyone else, who were doing their best to manage their pain while still living their lives. It was important for her that, through Pain Awareness Month, people living with pain felt like they were not forgotten and understood that their pain experience was real and not just “all in their head,” which is how many people living with pain are made to feel by others. She also wanted to get the message out that balanced pain treatment involves more than just medication. She created tools for pharmacists, nurses, and people living with pain that would teach people how to live a full life despite their pain.

Although Pain Awareness Month was originally set to launch in September 2001, it was delayed until 2002 due to the September 11, 2001 terrorist attacks on the U.S. The process of spreading Pain Awareness Month to the broader public took coordination among the American Chronic Pain Association, other pain-related associations, and healthcare provider organizations. More than 80 organizations have become partners in Pain Awareness Month, including the National Association for the Advancement of Colored People and the National Urban League.

Since the first Pain Awareness Month, what do you think have been the greatest advances in pain research and clinical care?

“The label of ‘chronic pain patient’ always bothered me. One of the advances that is near and dear to my heart is that people with pain are now starting to be referred to as ‘people with pain’.”

Penney described that she has been happy to see a growth in the number of professional publications that refer to people with chronic pain as ‘people,’ rather than as ‘patients,’ a practice well known in health communications that is referred to as “person first language” and focuses on the lived experience of individuals. She’s grateful that the conversation has shifted from ‘chronic pain patients’ to ‘people with chronic pain,’ noting that this changes how they are seen and treated by healthcare providers, researchers, individuals and teams providing social support services, and the public. Penney also explained that she is excited about research that has helped to understand the causes and mechanisms of chronic pain, such as learning more about how a person’s mood and brain contribute to the pain experience. One of the biggest steps forward, in her opinion, is the field’s renewed interest in multidisciplinary care that treats the whole person living with pain. She is hopeful that research and clinical care will continue moving in a direction that sees opioids or other pain medications as only one tool in a person’s pain management toolkit.

What do you see as the biggest gaps that still need to be addressed in the field of pain?

“It’s not just a head, it’s not just a foot, it’s not just a back. It’s a person. It’s a whole package. To treat pain, we need to unpack that entire package, meaning we can’t care for people if we don’t know who they are.”

Penney described four areas that, in her view, especially need to be addressed by future researchers, clinicians, and healthcare systems:

1. For insurance companies/payors: One concern that she expressed was that insurance companies can act as a stopgap for covering treatments that might benefit people living with pain. She noted that more conversations should be happening among payors, people living with pain, researchers, and pain clinicians. These conversations can help payors better understand the value of multidisciplinary programs for pain, such as helping improve quality of life and saving money in the long-term.
2. For pain clinicians: Penney’s message for pain clinicians is to validate the experiences reported by people living with pain. She explained that the more people with pain are questioned, the more defensive they understandably feel, and the less trusting in the healthcare system they become. Validating people, working with them to set achievable goals at the beginning of treatment, and empowering them to achieve those goals will lead to better outcomes. 
3. For pain researchers: Preventing the transition from acute to chronic pain, improving access to multidisciplinary pain centers, and developing non-addictive and effective pain treatments are the three areas that Penney sees as critical for future research. You can learn more about research in this area that is supported by the National Institutes of Health’s Helping End Addiction Long-Term Initiative here.
4. For people with lived experience of pain: Penney encouraged people living with pain to feel empowered in their recovery process. She noted that people can ask their pain clinicians questions and tell them what does and does not work for their unique pain experience. Taking more responsibility and accountability in the recovery process will lead to better quality of life in the long-term.