Public Comment on Pathways to Prevention Workshop Sponsored by NIH Office of Disease Prevention
Submitted May 23, 2014
The Office of Disease Prevention is to be commended for developing the Role of Opioids in Treatment of Chronic Pain Workshop on September 28-29, 2014. As a patient advocacy organization, we understand the serious need for discussion and research on opioid medications in the setting of chronic pain.
The National Fibromyalgia & Chronic Pain Association (NFMCPA) was surprised to see that the patient voice was not included as a member of the working group for this important initiative, particularly with the outcome to direct future research priorities. Recognizing the need for pain relief to improve the quality of life and functionality for the 100+ million American adults with chronic pain, research to discover the cause(s) of chronic pain should be a high priority. The preponderance of research and dedication of resources towards addiction over pain research is out of balance to result in less suffering for millions of people. The focus has been on addiction to the exclusion of the needs of the people in chronic pain overall, and specifically to have access to opioid medications since few other agents are available. Focusing on safe prescribing makes a lot of sense. Identifying people with the potential for addiction, abuse and diversion is important. Without a balanced approach to also address the relief needed by people with chronic pain for pain relief, unintended consequences have the effect of less access to pain care and treatment for millions of people.
As part of a comprehensive pain management plan developed between a physician and patient, medications may be an important component. The relationship between physician and patient needs to be respected and protected by all policy makers. When considering the magnitude of chronic pain as a health issue (one in three people), it is hard to understand why such few resources are deployed by NIH to research pain as a disease unto itself. How can we move towards new non-opioid therapies without significant research to understand the disease of pain? The current significant attention on addiction related to opioids does not result in advances for pain relief for the majority of the large population of people in chronic pain. Because access to opioid medications is controlled by policy makers, extra care on their part to balance the benefits and risks is imperative to prevent unintended consequences to the large population of people with chronic pain who need access to pain relief.
With no disrespect intended and with concern for addiction issues, NFMCPA wants to point out that the sheer number of people affected by addiction is much smaller in comparison to the number of people suffering with life-altering, disabling, serious chronic pain who need access to pain relief. Both health issues affect their families and friends, as well as society. Where is the parity for attention to the attending issues for each population? At least equal attention and deployment of resources should be given to pain research and discovering new pathways for pain relief. Advancing parity would seem to fall within the scope of responsibility for the Office of Disease Prevention.
Representing the patient voice for millions of people, the National Fibromyalgia & Chronic Pain Association is concerned that the patient perspective will not be included in the draft report that identifies future research priorities. We call on the Office of Disease Prevention and other NIH parties to address the issues discussed in this statement.