By Ed Coghlan.

Some three thousand people – most of them chronic pain patients – have responded to an online survey conducted by Terri Lewis, Ph.D. The results have been submitted to the FDA following the July public meeting for Patient-Focused Drug Development on Chronic Pain.

In her first report, Dr. Lewis talks about who responded:

People from across the country responded to the call (2988 as of September 7, 2018) to share their story and elevate their concerns to the Food and Drug Administration for the July 9 meeting. Here the topic was drug development for chronic pain. The majority of respondents were females (78.32%), Caucasian (95.32%), with education beyond the high school level (about 85%). Respondents describe in detail the impact of loss of adequate pain care on activities of daily living, loss of employment, and encroachment on family obligations. Those who self-identify in other categories (males, Hispanics, Native Americans, LQBTQ, Blacks) share compelling stories that reflect the current negative cultural identity imposed on those who are living with the experience of pain. Reflected in these reports are stories of pride of survival, outrage, pain, shame, advocacy, and compromised identity.

Respondent age is distributed across age groups from less than 17 years (.37%) through more than 60 years of age (28.4%), with the highest number of responses in the 50-59 yr. age group (33.3%, n=997). Eleven parents answered the survey on behalf of their children. Persons with chronic pain (95%) formed the largest response group, with care partners, family members, and helpers making up the difference. A number of health care workers responded who are persons coping with chronic and intractable pain even as they minister to their patients in pain.

The vast majority of individuals are persons with multiple chronic conditions that generate pain acquired as the result of progressive disease or catastrophic injuries that failed to heal. A number of individuals have dealt with pain for the balance of their lives, dealing with disabilities present at birth that followed them into adulthood. Many individuals have chronic diseases that arise from multiple sources or affect multiple body systems, and many have 2,3,4,5,6 or more diagnoses for which they require complex care. Some have survived cancer, and many have survived medical harm acquired from treatment within the health care system. A number of respondents are persons with complex conditions who are caring for loved ones far more compromised due to loss of care.

The motivation for some is very clear – they want the government to hear their story, to express their concerns for the current climate of care, or to share the story of a loved one lost to suicide as a result of the loss of effective palliation for chronic or intractable pain. Sixty-seven persons described the conditions under which their loved made a decision to end their life due to change to care routine, a withdrawal of medications, or suspension of medical management supports for pain through physician abandonment or forced taper. Fourteen families describe in detail the conditions under which the substitutions or withdrawal of prescribed medications resulted in accidental death from prescribed medications (any prescription or over the counter) that were substituted for their normal and stable prescribing routine (step therapy or substitution of another class of medications). More than 190 individuals shared the active thought processes in play around their decision to end their own life through suicide if conditions of care don’t improve or a stable therapeutic routine is not restored to them.

Every state is represented in this data – from Florida with a high of 227 persons, to Hawaii with a response group of 3. Both rural and urban communities are reflected down to the zip code so that the data can be cross tabulated with other public data bases.

The Who, What and the Where of the data and who answered this survey can be seen below.

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