Tag Archives: advocacy

Advice on Commenting to the HHS Task Force

Tell the Task Force! Advice on Commenting to the HHS Task Force on Pain Management – National Pain Report – By Richard A. (“Red”) Lawhern, Ph.D. – Jan 2019

I sympathize with anybody who may find the Task Force draft to be a tough read. The text is ~60 pages with 446 references.

That’s why I summarized it for you over 3 posts here:

This report is a very positive development for pain patients, especially because (in part 2 of my posts) it specifically rejects the CDC guidelines that have caused us so much disability, distress, and death.
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Clampdown on Rx opioids is hurting pain patients

The clampdown on opioid prescriptions is hurting pain patients – by Kate M. Nicholson – Jan 2019

Here is another article by our great advocate, Kate Nicholson, that appeared in the Los Angeles Times – a very mainstream media outlet – where it could be seen by millions.

…at the age of 30, I was no longer able to sit or stand. I could barely walk short distances. These limitations, related to a surgical mishap, would continue for almost 20 years…

When medical advancements led to an improvement of my health, I went off opioids without incident.

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Request for Feedback to HHS task force

Feedback to HHS | HHS.gov – HHS asking for comments on the task force report (previously covered in three parts here):

Submit through the Federal eRulemaking Portal at:
https://www.regulations.gov/document?D=HHS-OS-2018-0027-0001

(There’s a “Comment Now” button at the top right of the page)  

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Patient-Focused Drug Development meeting with FDA

Patient-Focused Drug Development meeting with FDA – Twitter Conversation sent by Scott Gottlieb, the FDA Commissioner from:

Scott Gottlieb, M.D. @SGottliebFDA   
#FDA will be hosting a Patient-Focused Drug Development meeting July 9 to obtain patients’ perspectives on the impacts of chronic pain, views on treatment approaches and challenges or barriers to accessing treatments.

This sounds promising to me. It seems like big step forward for pain patients, for the FDA Commissioner to publicly acknowledge that we exist and that opioids are necessary for some of us… quite a daring move in today’s opiophobic political atmosphere. Continue reading

Op-Eds: How to share your story effectively

OP-EDS: SHARE YOUR STORY – From the U.S. Pain Foundation.

The US Pain Foundation has put together a guide with tips for writing Op-Eds for your local newspapers:

Chronic pain is often misunderstood and stigmatized by the general public. U.S. Pain Foundation believes that, in order to create positive change in the perception of pain, people living with chronic pain must share their stories far and wide.   Continue reading

Financial Ties that Bind…

I recently discovered that money, and thus influence, from the pharmaceutical industry has seeped into almost every national pain patient advocacy group, if not directly, then through intergroup relationships. Right on their public websites, it’s plain to see that “our” advocacy organizations are infested with pharmaceutical dollars.

Thanks to that irresistible money, the motivations of pain patient advocacy groups can be justifiably challenged: they could be pushing for pain patients’ rights to opioids only to generate more business for their “partners”, the pharmaceutical companies. (And, for all we know, this might even be true of some.)

I don’t mean to imply that these advocacy organizations aren’t doing much good for us, but there will be a limit on how far they can push any viewpoints that are contrary to the industry’s interests. I anticipate a direct conflict of interest when it comes to affordable (generic) pain medication.   Continue reading

50 Resources to Help You with Chronic Pain

From A to U, here are 50 organizations you can go to for information, help and resources to help you manage the challenges of living with chronic pain.

This might be the most complete list I’ve found, with listings for the science-minded, like Chronic Pain Research Alliance (www.chronicpainresearch.org), to the humerus (for young people) Stupid Cancer Association (www.stupidcancer.org)

Patient Advocates Call on Brandeis to Fire Kolodny

Patient Advocates Call on Brandeis to Fire Kolodny — Pain News Network – October 03, 2017 – By Pat Anson, Editor

A coalition of physicians, patient advocates and pain sufferers has written an open letter to Brandeis University asking for the dismissal of Andrew Kolodny, MD, a longtime critic of opioid prescribing who is co-director of opioid policy research at the university’s Heller School for Social Policy and Management.

Kolodny is the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that has lobbied politicians and regulators for years to enact stronger measures to limit prescribing of opioid pain medication.   Continue reading

Advocacy Against CDC Guidelines

This advocacy advice comes from Richard Lawhern, a tireless advocate for pain patients. He was a headline speaker at the “Stop the War on Chronic Pain Patients” rally in Wash DC last fall (See Making Ourselves Heard) and has personally contacted both journalists and legislators to fight the flood of anti-opioid articles and legislation.

I thought I would share some tactics that may help others be more effective in this kind of advocacy.  Some of this is things I’ve heard. Some is what I’ve experienced myself.

  1. Physically visiting your own Senator’s office with an appointment to see a staff member by name is the most effective lobbying you can do without a checkbook and deep pockets.  Senator’s constituents will always get priority over a non-resident. Continue reading

Take a Stand for People Living with Chronic Pain

TAKE A STAND FOR PEOPLE LIVING WITH CHRONIC PAIN:

People with pain are misunderstood, inadequately treated, stigmatized and marginalized on a daily basis and are forgotten about.

Join People with Pain Matter and take action by advocating for nearly 100 million Americans afflicted with chronic pain.

This site offers a form into which you can write your story. The organization will then route it to all the people and places where it can do some good. Continue reading