Sunday, June 17, 2018

Opportunity Knocks Again: Public Comments on Patient-Focused Drug Development for Chronic Pain

As an advocate, registered nurse, and patient, I feel we are forced to work within a system devoid of a plan for addressing the physiological, psychological, financial, and social consequences of living with persistent pain.
If we want change, we are obliged to share our unique individual circumstances and our life encounters. If you have been affected by having your opioids restricted, if you want pain management that fits within your personal framework, it’s time to use your voice.

ID: FDA-2018-N-1621-0001

The Food and Drug Administration (FDA, the Agency, or we) is announcing a public meeting and an opportunity for public comment on “Patient-Focused Drug Development for Chronic Pain.” The public meeting will provide patients (including adult and pediatric patients) with an opportunity to present to FDA their perspectives on the impacts of chronic pain, views on treatment approaches for chronic pain, and challenges or barriers to accessing treatments. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies.

The public meeting will be held on July 9, 2018, from 10 a.m. to 4 p.m. Submit either electronic or written comments on this public workshop by September 10, 2018. See the SUPPLEMENTARY INFORMATION section for registration date and information.

Comment Now!
Due Sep 10 2018, at 11:59 PM ET

My comment:

First, thank you for listening to the voice of patients. As an RN and lead author of five books on pain and integrative therapies, I am sickened when I read about another suicide by a fellow pain patient, resulting from the crackdown on opioid prescribing. I am concerned about accountability, because physicians bear the consequences of not treating their patients. I am angry about the false narrative of media reporting.

As a person living with persistent pain and autoimmune disease, I use every alternative tool available to me, including invasive pain management. I participate in physical therapy, but Medicare doesn’t allow enough visits to be therapeutic. I do everything I can to keep opioid use to a minimum, yet I feel judged by my government for needing it? I have severe damage to my body from NSAID overuse. They are not a safer than opioids. I do not tolerate the side effects of antidepressants. Anti-seizure medications disconnect me from reality. I feel like a free guinea pig for the pharmaceutical industry, as I take the risk of off-label trials while they make the money. I am elderly and I am angry that my primary doctor will no longer prescribe the small amount of opioids that work for me, that I can afford, and that allow me to participate in integrative therapies.

Pain physicians are overworked and now either restrict their practice to interventions only or require monthly visits. Many of us do not have transportation to pain clinics or the ability to make co-payments. These practices are driving the cost of pain care to the moon. There is a lack of evidence that urine drug tests are consistently accurate or that they are having any effect on drug addiction, yet these companies make a large profit off vulnerable patients.

People who live with unrelenting pain should have their pain managed well enough to participate in integrative therapies like mindfulness, tai chi, physical therapy, etc. Education is needed, not prohibition. The money wasted on the war on drugs could be used to develop outcome-based programs to help people with drug addiction and research for those of us who live with daily unforgiving pain.

Again, thank you for taking public comments. I am more than a statistic, I am  one face of pain.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

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