Wednesday, January 30, 2019

Deadline To Comment On New Federal Recommendations On Pain April 1st – Read Mine

If you have had your pain care jeopardized because of the opioid crisis, please refer to the US Pain Foundation toolkit. You can access the full report and find the toolkit HERE. Or you can comment at Write as little or as much as you would like. The important thing is that we use our voice.

Comments on the task force proposal due by April 1, 2019.

RE: The Inter-Agency Task Force Draft Report on Pain Management Best Practices.
Docket Number: HHS-OS-2018-0027

To those concerned,

The IOM report and the National Pain Strategy have addressed the stigma of chronic pain, yet here we are nearly a decade later in worse shape than ever. I appreciate your efforts to take integrative therapies mainstream, educate others on the benefits of responsible opioid treatment, and stop the lunacy that is driving pain patients to suicide as the “opioid epidemic” (which should read ILLEGAL, BLACK MARKET FENTANYL, thank you.) continues to rise. We need factually driven reports, not those that sensationalize inaccurate data to make money at our expense. I wish there was a plan to engage with the media that includes the unintended consequences of addressing the drug problem we have in the United States. 

I could use better pain control, but I would have no life if I had to plan it around monthly all-day visits to a pain doctor to get 60 pills. Thank you for thinking of people like me. It would be great if you could get Medicare to pay for monthly therapeutic trigger point massage and my TENS unit supplies. It would be nice if I had help with the cost of a new PEMF device, pay for my EEG biofeedback device, or pay for unlimited visits to my physical therapist to get active release therapy. Thank goodness I have access to interventional care such as ultrasound guided trigger point injections, cervical nerve ablations, and occipital nerve blocks, but they only provide temporary/partial relief and Medicare won’t pay for me to have them when they wear off. Instead, I have to wait the six months as my pain escalates out of control and tethers me to my recliner, draped in warm compresses and ice packs, praying my TENS adhesive doesn't cause blistering too quickly. I pay an extraordinary Medicare premium (NO! Medicare is NOT free, and tie-in plans rate chronic pain patients up for their “pre-existing” chronic pain condition). My pain specialist does not take Medicare Advantage plans, but even if he did, their would be co-pays. I am grateful that the task force is addressing this. This is a good start, but I have reservations.

Over the long-term, I hope things will be easier for the patient and reduce the justified fear of physicians to prescribe. Patients have become unpaid guinea pigs for Big Pharma as pharmaceutical companies push physicians to prescribe other “newer” central acting agents that come with their own basket of interactions and abuse risk. I have permanent damage to my esophagus and stomach and have suffered the consequences for twenty years. Obviously, there was a time Feldene was my drug of choice.

In closing, I appreciate all those on the task force for providing a report that considers many of my personal concerns; it is comprehensive. We need reliable research that is not paid for by parties who will benefit from the outcome. Let us all hope there is forward motion for making pain care individualized, compassionate, accessible and effective.

Sincerely, Celeste Cooper, Retired RN

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

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