On Wednesday, May 30, 2012, Jan Chambers, president of the NFMCPA made public testimony on behalf of the fibromyalgia community to the FDA during their scientific workshop on the NIH Campus in Bethesda, Maryland. The workshop focused on opioid labeling and education of prescribers. Her comments are below.
"Hello. My name is Jan Chambers. I am the president of the National Fibromyalgia & Chronic Pain Association. Thank you for convening this workshop and for the opportunity to speak on behalf of more than 6 million Americans who are affected by fibromyalgia.
Fibromyalgia is a complex illness with complex symptoms. As Dr. Woolf stated earlier, only 25% of people in pain respond to treatments. Physicians and patients are frustrated. Longitudinal studies are needed for the three medications approved for FM. There needs to be much more research, not only funding, but a diversity of research.
The management of symptoms, including pain, is important to people with FM, their family unit, and those who care for them. We need at our disposal any and all reasonable methods of management associated with this disease.
We have concerns around public policies related to access to care for our patient community. We encourage those who are in leadership positions to make decisions that benefit people with this painful illness.
The IOM Report "Relieving Pain in America" made recommendations that federal agencies work together and with other stakeholders, including patient advocacy organizations to gather data, educate, and bring about a cultural transformation regarding chronic pain. Steps in research have great promise for future beneficial treatments. We are seeking commitment to see this through to the end. Opioid problems created attention and energy for serious dialogue on chronic pain issues. The end is to understand cause and treatment of chronic pain diseases.
The patient perspective on research, policy and treatments is needed, as Dr. Woolf indicated earlier, to help gain much more information from patients to understand what is happening in their central nervous systems. As a fibromyalgia patient, I know we are stuck--still stigmatized within the healthcare community outside of educated researchers. Currently the loss of control to manage our bodies often equates to a loss of dignity when trying to convince a community physician that we are not imagining FM symptoms. We don't want more loss of grey matter in our brains by using opioids. We don't have many options and need your help to become unstuck through increased funding for research, translational research and educating others that fibromyalgia is a central nervous system disease.
Thank you for your attention. Please let us know how we can be of assistance to have reasonable access to care, contribute to better policies, and facilitate research.