By Ed Coghlan
Over 1,000 people—many of whom are National Pain Report readers—have filled out a survey designed to inform an FDA Patient Meeting on July 9, 2018. The official title of the event is a Public Meeting for Patient-Focused Drug Development on Chronic Pain.
For Dr. Terri Lewis, who is conducting the survey, the response has been both gratifying and disturbing, noting that she is capturing a lot of data that reflects the changing ways chronic pain is treated in the wake of the CDC Opioid Prescribing Guideline.
She (and we) are asking that if you haven’t yet filled it out—to please do so in the next couple of weeks. She will cut off responses by June 17 in order to tabulate the results to be ready for the meeting in July.
To take the survey, click here.
As Dr. Lewis wrote last month, “For months now, chaos has reigned in the lives of persons with complex illnesses, chronic and intractable pain. It’s breathtaking – we hardly know where to turn in response to the advancing hordes of disinformation, misinformation, and downright false representations about the lives of Americans who rely on the healthcare system to live and meet family and community obligations. The effect of this chaos is palpable – outrage, fear, frustration, confusion, anger, feelings of just giving up because it is simply too much. And increasingly some are doing just that – saying ‘enough’ and ending their lives.”
It takes about 30 minutes of your time to complete this survey (unless you write a book). All of FDA’s questions for the July 9 meeting are included into the survey tool. They are incorporated in a way that they can be compared to a variety of important questions about other pending changes to the system – the CMS2019 final rule that will take place in June of 2019, DEA’s proposal to downsize production caps (again), continuous changes to state regulations, and more.
Estimates of persons with chronic and intractable pain range from 25 – 55 million depending on the source and definitions in play (there’s that chaos thing again). Medicare (2015) reflects that roughly 55 million people meet the definition of multiple complex chronic illnesses defined as two or more life-long disruptive progressive diseases. But we still have 17 states without consistent access to health care and in many states, hospitals and primary care and pain clinics are closing. Our experts are being harassed by DEA, because they framed the chronically ill as persons who are abusing the system.
While management of diseases and pain is very personal, the goal of this survey is to help us to understand the effect of the chaos that has been visited upon you and to communicate this to others in ways that it can be heard and cannot be ignored. By linking your comments to other data at the state level and the federal level, we can document harms and counter the misinformation and disinformation that is spread by the bots and trolls that manipulate and move regulators and policy makers who are making decisions that will negatively impact your lives.
Here is a story on the early results found in the survey. A more comprehensive report will be available before the July 9th meeting.