The deadline for public comment on the HHS Pain Task Force draft report has passed. The 90-day period expired at midnight eastern time on Monday April 1st. Last we checked, over 3,500 responses have been received…a number that may swell to 4,000 by the time all are tabulated.
One that was filed on Monday caught our attention because it was submitted by eleven pain advocacy groups. We’ll list the organizations at the end of the story.
Here are the highlights of the letter (thanks to US Pain Foundation’s Cindy Steinberg for the summary).
- While the report raises the issue of suicide in those with chronic pain it does not adequately identify ways to address it; we recommend ways to do that
- Patients must be considered an active member of the care team and their preferences as well as their limitations caused by factors such as geography, provider workforce, transportation, family responsibilities, socio-economic status and work schedule, if they are able to work, must be considered when developing a care plan
- Develop outcome measures based on functionality and quality of life rather than just decreases in pain score and reductions in opioid use
- There is a lack of guidelines and/or resources for patients who experience forced tapering or abandonment which is much too common at present
- Establish guidelines for providers on how to handle the situation in the case of an unwanted test result
- Language matters and can worsen stigma; terms like “catastrophizing” and “maladaptive behaviors” used in the report are pejorative and judgmental even if they are currently used frequently by providers.
- Add caregivers as a special population acknowledging the vital role they play as well as the stress and anxiety they may experience in caring for family members or significant others with pain
The letter was signed by the following organizations:
The Center for Practical BioEthics
CHAMP (Coalition for Headache and Migraine Patients)
Chronic Pain Research Alliance
For Grace: Women in Pain
Global Healthy Living Foundation
Headache and Migraine Policy Forum
International Pain Foundation
Interstitial Cystitis Foundation
RSDA (Reflex Sympathetic Dystrophy Syndrome Association—CRPS)
The Pain Community
The U.S. Pain Foundation
If you belong to any of these organizations, send them an email thanking them for their advocacy. If you have submitted comments to the HHS, let us know what you told them.