Tag Archives: advocacy

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

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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)

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

Vilified and Coerced, Pain Patients are Desperate

Vilified and Coerced, Pain Patients are Desperate 

In no other medical field are patients subject to such vilification, suspicion, and coercion as in pain management.  Chronic pain patients have been abandoned in the blind rush to “protect” us from addiction to opioids, without concern for their legitimate use as pain relievers of last resort.

Those of us that require opiate medication for pain are treated like criminals.  We must sign away our privacy and allow our medical records to be scrutinized by law enforcement, the DEA, or any third party private contractor working as a “drug warrior”.  If we don’t sign, we don’t get treatment–this is blatant coercion.

Already struggling to make life worthwhile in my painfully broken body, I must now face additional hardship, expense, and obstacles legislated by my government.

Continue reading

Simplistic Solutions to Complex Social Problems

Our culture seems to believe that simplistic moral solutions can solve complex social problems.  

Applied to the problem of addiction to pain-relieving opioids, the response looks like this:

  1. Identify the “bad thing” (opioid drugs),
  2. declare war on it (War on Drugs),
  3. initiate a media campaign of misinformation (propaganda),
  4. take enforcement action (DEA raids),
  5. over-prosecute a few high profile cases (CVS, Walgreen’s, Pain Doctors),
  6. scare everyone else (legal threats), and
  7. then spend millions of our tax dollars (enforcement)
  8. forever (War on Drugs is still being fought after 30 years).

This creates a bureaucratic monster:  Continue reading

Pushed Beyond Hope

Warning: This is a very angry essay about how the campaign against opioids could push someone to suicide.

I used to think I was the only one wrestling with these thoughts until I lately discovered other like-minded folks. I wasn’t sure whether to post it, but then I saw a question on the Inspire.com Pain and Pain Management forum about this very idea, and this is my answer:

Pushed Beyond Hope

Over the last few months, the accumulation of forces against opioid prescribing has pushed me over an edge, pushed me past my sense of self-preservation and into a fundamental shift of my expectations of life.   Continue reading

Harm from Opioids or Harm from Chronic Pain?

There’s been so much talk about the downside of opioids, but hardly anyone mentions that letting pain persist does damage as well. Chronic pain is stressful and debilitating, it keeps our bodies and nervous systems in a constant state of exhausted alarm.

Chronic pain is an invisible festering wound.

I’ve struggled with pain and pain relief for decades. I learned long ago, after much trial and mostly error, that opioids were the only means by which I can control my pain enough to make my life bearable.

When taken as directed, these medications do not make you numb or completely pain-free, and they certainly don’t get you “high” when taken for pain. They merely dull the pain enough to be tolerated. It’s not an ideal solution by far, but in many cases it’s the best alternative currently available.

Continue reading