Tag Archives: pain advocate

CDC Opioid Prescribing Guidelines–A Threat To Pain Patients’ Lives

21 Sep

by Heather Grace IPJ Staff Writer

On September 16, the Centers for Disease Control and Prevention (CDC) did something dubious. What’s frightening… it’s likely to have a life-altering impact on all chronic & intractable pain patients. Was this a deliberate act? I’ll let you be the judge.

They decided to release/discuss the CDC Opioid Prescribing Guidelines that will go into effect in 2016. These guidelines were designed to further curb opioid abuse. But in fact, they seem to be about arbitrarily curbing treatment.

In order to even view the CDC’s draft of opioid prescribing guidelines, you had to attend the webinar. They were not downloadable. They recorded the webinar, but are not releasing it to be watched for those who missed it.

And to comment on the CDC’s hard-to-access proposed guidelines, you had just one day. No–that was not a typo! Just one day was allowed for comment! Comments had to be in by 5pm eastern on September 17th, which meant people like me and other west coast advocates did not get to comment. Unfortunately, I didn’t find out until it was too late that it would close at 2pm my time. How many others wanted to comment, but were unable to?

A final version of the CDC’s guidelines will go into effect 2016 onward. Based on what I’ve read/heard from an expert in the field, drastic changes are ahead. We should anticipate a very low arbitrary limit on pain medication for all patients nationwide, even the most seriously ill. What’s most troublesome–the CDC intends to set that limit even lower than the 100mg/day now in effect in many states. (See #5, below.)

The draft guidelines are outlined below thanks to the Pain News Network–thankfully. They will not be available in draft form on the CDC’s website, despite the fact that guidelines will be discussed from now through December.

CDC Draft Guidelines for Opioid Prescribing

  1. Non-pharmacological therapy and non-opioid pharmacological therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks.
  2. Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.
  3. Before starting and periodically during opioid therapy, providers should discuss with patients risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.
  4. When starting opioid therapy, providers should prescribe short-acting opioids instead of extended-release/long acting opioids.
  5. When opioids are started, providers should prescribe the lowest possible effective dosage. Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.
  6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of short-acting opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days will usually be sufficient for non-traumatic pain not related to major surgery.
  7. Providers should evaluate patients within 1 to 4 weeks of starting long-term opioid therapy or of dose escalation to assess benefits and harms of continued opioid therapy. Providers should evaluate patients receiving long-term opioid therapy every 3 months or more frequently for benefits and harms of continued opioid therapy. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids when possible.
  8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid-related harms are present.
  9. Providers should review the patient’s history of controlled substance prescriptions using state Prescription Drug Monitoring Program data to determine whether the patient is receiving excessive opioid dosages or dangerous combinations that put him/her at high risk for overdose. Providers should review Prescription Monitoring Program data when starting opioid therapy and periodically during long-term opioid therapy (ranging from every prescription to every 3 months).
  10. Providers should use urine drug testing before starting opioids for chronic pain and consider urine drug testing at least annually for all patients on long-term opioid therapy to assess for prescribed medications as well as other controlled substances and illicit drugs.
  11. Providers should avoid prescribing of opioid pain medication and benzodiazepines concurrently whenever possible.
  12. Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.

Patients: Prepare to Decrease Pain Med Dosages

Despite the fact that I have to be on pain medication for the rest of my life due to severe constant pain from a central pain syndrome / a spinal cord injury, I was advised by my doctor to prepare to decrease my dose, as it is a likely outcome. I’m really worried. I know people I’ve gotten to know like family will die if we’re forced to conform to the these guidelines.

As for me? As strong as I’ve been, I see myself back “on that ledge” between life and death, contemplating suicide, just like I did before adequate pain care in 2006… if it ever gets to that. If the CDC decides they want us dead, and if they indeed force me back to *that* point in 2016 with these guidelines — the twisted, ugly dark place most people come back from — the world would know exactly why I took my life. I won’t allow stats-massagers to list me as an opioid death.

The thing is, I don’t *want* that to happen. I don’t want pain care to get any worse for anybody! But I’ll be silent no more about the fact that I’m terried… truly terried. Neither should you, if you’re reading this and feel the same.

The CDC said the guidelines were developed after a series of meetings with a core expert group and independent peer reviewers that the agency did not identify by name. However, I believe I have found the names of the peer reviewers, thanks to a hidden PDF on their site:

PEER REVIEWERS

Jeanmarie Perrone, MD
Professor of Emergency Medicine, Hospital of the University of Pennsylvania Director, Division of Medical Toxicology, Department of Emergency Medicine University of Pennsylvania
Expertise: medication safety, emergency department prescribing, substance misuse, use of prescription drug monitoring programs, toxicology, provider education

Matthew J. Bair, MD, MS
Associate Professor of Medicine, Indiana University School of Medicine
Expertise: pain management, geriatrics, non-pharmacologic treatments, mental health, veterans’ health

David Tauben, MD
Chief, Pain Medicine
Clinical Associate Professor, Department of Anesthesia and Pain Medicine
Department of Medicine Division of General Internal Medicine
University of Washington
Expertise: medical education, primary care, pain management

You can view the rest of that PDF on my site, in case they remove it.

CDC officials have long been critical of opioid prescribing practices and have repeatedly cited a study that claims over 16,000 Americans are killed annual by overdoses linked to pain medications. But is that true?

Those numbers are grossly overstated, according to my research. I have reviewed many documents on many sites other that Pain-Topics.org, but they have great data on *WHY* the stats are inaccurate/inflated. From my review of this issue, it is clear statistics on a growing problem means more money to fight that problem each year, when the “pie” of government funding is carved up. Perhaps a larger share will go to the CDC next year, thanks to this unreasonable set of rules they plan to force upon people in pain? How terrible that dollar signs are more important than American citizens–even those of us in severe, unending pain.

From my research, I’ve found that pain medication is being sited as a cause of death merely because it exists in people’s systems, even if they were a passenger on a 747 that crashed. Also, to increase numbers of supposed “opioid-deaths,” statistics are inflated by including deaths caused by dangerously mixing of illicit/prescription substances with the intention of getting high. These are not patients who are being treated for serious pain-related illnesses. These are, sadly, people trying intentionally to harm themselves–to create a chemical reaction in their bodies that is unnatural and dangerous.

Not to mention, despite the hype, pain medication abuse is not anywhere near the top 10 causes of death in the U.S.! So why are we the scapegoats? It has to be money… what else could it be? We aren’t hurting anyone. We avoid illicit substances. We beg for help. Repeatedly. Isn’t it time this “war on drugs” stopped making *us* its casualties?

MY QUESTION IS: ARE WE GOING TO LET THE CDC STEAL OUR PAIN CARE AND KILL US ALL?

They claim they will be using evidenced-based material in forming these guidelines, but they don’t talk about all the people who kill themselves because the pain is too much to bear. Nor do they mention all of the people with intractable pain who die due to lack of appropriate care in the emergency room, despite cries for help and pleading with ER docs to call their pain management physician. It’s happened 3 times this year, to people I know!

I suspect a lot of this so-called data comes from PROP (Physicians for Responsible Opioid Prescribing), an extremely controversial organization that has lobbied Congress and criticized the FDA for not doing more to limit access to opioids. Why do I say this? There’s a link to PROP literature calling for “cautious, evidence-based opioid prescribing” on CDC’s website, on a page discussing safe prescribing tools” (See it here, at the bottom of the page.)

In case they remove the link on this page, I’ve included a screenshot of the page, here (click to see larger image):
CDC-Safe-Prescribing

The email used to comment on this atrocity created by the CDC was opioidcomments@cdc.gov. I got an error message when I tried to comment after 5pm on 9/17. But I suggest you flood the CDC with complaints, anyway! Call the Centers for Disease Control at
800-CDC-INFO / (800-232-4636) or TTY: (888) 232-6348, Monday-Friday
8am-8pm eastern. Email them using their contact form: https://wwwn.cdc.gov/dcs/ContactUs/Form. Write them at: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329. View http://www.cdc.gov/contact/index.htm for more options.

Even Better: If someone has time, why not post a comment with the contact info for the peer reviewers, listed above? Let THEM know we’re mad as hell and not gonna take this… It’s time we united for the common good. It’s time ALL PAIN PATIENTS became PAIN PATIENTS/ADVOCATES.

Are you with me?


About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Pain Reality Day—September 9th: Vital Chronic Pain Event on Social Media

6 Feb

COMBAT MYTHS/MISCONCEPTIONS WITH YOUR CHRONIC PAIN TRUTH

By Heather Grace, IPJ Staff Writer

Speak Up! Sept 9 is #PainRealityDay

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being part of the 1st Annual Pain Reality Day—YOU are invited! Join us via social media all day 9/9/15, using hashtag: #PainRealityDay. This new social media event will take place every year on September 9th as part of the annual Pain Awareness Month campaign.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose of truth! Are you brave enough to snap a few pics or a quick video that shows the unshowered, PJ-clad reality of one of those days when you’re just too damn sick to step outside & pretend everything’s ok?

Good! So am I! Why? The world needs to see our puffy-eyed, slightly disheveled excruitiating truth! Maybe then, people will think before they once again brazenly say: “you don’t look sick” (or whisper it, behind our backs). They need to know what it’s like to hurt so badly you can hardly breathe, much less go out into the world and brave another difficult day among the misinformed masses.

They need to know how tough it is to be seriously ill yet seen as a lazy, possibly drug-addicted pill popper. They need to feel the indignity each of us has felt, as we beg doctor after doctor to respond appropriately to our cries for help. They need to understand the anguish of losing an entire support system one person at a time when you need them most—your best friend, your mother, your significant other.

Only someone like YOU, who has suffered one unthinkable chronic pain-fueled tragedy after another, can tell the world what it’s like to slowly fade into invisibility but still be fighting to be believed. So, let’s finally say the things that must be said. Let’s unite as we open the doors to the private hell of the pain patient. We need to be heard just as much as they need to listen!

You’re invited to share each and every raw, real, enlightening truth about your pain during the inaugural Pain Reality Day, September 9th via Twitter, Facebook, your blog or the social media app of your choice. Don’t forget to include the hashtag: #PainRealityDay with each post!

Oh, and feel free to share this event with *everyone* you know who’s impacted by chronic pain: https://m.facebook.com/events/330332963834825.

All About #PainRealityDay

Show the world what it’s really like to live w/ Chronic Pain—all day 9/9/15, the 1st Annual Pain Reality Day, via the Internet. This is an advocacy event that will take place across the whole of the web—every blog, Twitter account, YouTube video and Facebook page belonging to people impacted by pain. Don’t forget to add the hashtag #PainRealityDay to each post, video or blog entry!

Who’s in? Please join us, but don’t forget to share this event with *everyone* you know who is impacted by pain patients, caregivers, health professionals, advocates, loved ones, the media! Share it via Twitter, Facebook, YouTube, etc. This day, 9/9 is for everyone who is advocating for better treatment of all pain patients. Tell everyone to visit PainReality.com for all the details!

What should you share? Any information that expresses YOUR Pain Reality… people need to understand we are just like anyone else with chronic illness invading every aspect of our lives—except that we are also persecuted for our condition. Tell them how it feels to have the people you love most suddenly not support/understand you, or worse—believe you’re lying/exaggerating our your condition. Explain how Healthcare professionals have treated you, just for wanting the help you need to get better. Tell the world how you have had to set aside your feelings/dignity far too many times as people mistreated you for being sick.

If you’re like me, you’ve lost a great deal to your illness:

  • your career/ability to work a “normal” job
  • your social circle-because you can’t just hang out with friends whenever you want
  • relationships with people you thought would be there ‘no matter what’
  • your home & any semblance of financial security
  • access to the quality of healthcare you could once afford

Express how it feels to lose a great deal of what made you you & to suddenly be dealing with your serious health issues alone. Or if you’re lucky and have family support, share how you have to meet familial obligations/expectations by pretending you’re well enough to do/be what they expect you to… often by pushing yourself/overdoing it/making yourself more ill.

How should you share? Via any social media app (Facebook, Twitter, YouTube, etc.) or your very own blog/vlog—using the hashtag #PainRealityDay. TIP: Using short video clips/vlogs, audio clips or photos are great ways to share your pain reality, in addition to text posts.

Get as personal as you feel comfortable! Remember, #PainRealityDay is about making the world see us for who we really are! So, feel free to openly share all the ways pain challenges you & has made your everyday life different than it once was—before the pain. Got a famous quote from someone who lived with pain helps express how you feel? Or a psinting from a tortured artist? Those are also great ways to express your journey!

Share as many times as you’d like on September 9th, on any social media app… So long as you use the hashtag #PainRealityDay, your story will be connected to this important event. We will be hosting/sharing everyone’s posts via PainReality.com & on this blog. Note: The site is still being worked on, so for now it’s just this introductory information that’s been posted, but more is coming very soon!

When on September 9th? #PainRealityDay is all day long, so join in whenever you are ready! We will start at 12:01am and end at 11:59pm your time. Anytime you feel up to it, throughout the day, share aspects of your world with chronic pain via #PainRealityDay!

People need to see our reality, so please join me in sharing it! YOU are invited… to share our common reality and unite with all of the people who are just like you, on 9/9. In the meantime, spread the word about September 9th — Pain Reality Day, by using the hashtag #PainRealityDay! Feel free to link to this page and to the event on Facebook, as listed above. Can’t wait to ‘see’ you all there!


About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct

READER QUESTION:

This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!

You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.

Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)


Getting Help While In Chronic Pain Crisis
Answered by Heather Grace

Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!

I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…

Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.

Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.

I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’

And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.

As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.

I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.

Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.

Two things to get you started:

(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.

(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!

Going forward… Know that effective pain care does exist. And, I will help you find it.

All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.

If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?

I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.

Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.

Hugs, Heather G.

**************
UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!

© 2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Portrait of Activism: Pain Advocates Meet with Los Angeles DEA

21 Aug

“Advocating for Another” Carnival 2012 – Day 1

By Heather Grace, IPJ Staff Writer

Being an advocate in the pain community can be challenging. Much of the country has a stigma against pain care. The media teaches the public that lifesaving medications are dangerous and addictive–to be feared.
Often, that requires pain advocates to be incredibly brave. We don’t just speak up, and go against the grain by telling people how much our lives have improved by received adequate pain treatment.

We also act. How many people with pain would willingly walk into their local DEA office and openly discuss their pain care with federal law enforcement? I don’t know how many. But, we did.

Myself & 3 other dedicated advocates met with the DEA in Los Angeles to discuss how we could better work with them to build a bridge of understanding between patients & law enforcement.


Pictured are L to R: Heather Grace, Radene Marie Cook, Gina Libby and Doug Cook (members of the American Pain Foundation’s Action Network/Intractable Pain Patients United). Taken January, 2012.

People who live with chronic or intractable pain just want some semblance of a normal life. And the DEA wants to go after bad guys. Why would patients ever be suspects? You’d think it would be simple to tell the difference between a patient and a bad guy. Year after year, the line just seems to become more blurred.

The truth is, law enforcement isn’t taught what a patient is/does. They’re taught to hunt the bad guys-often deceptive, often going to great lengths to get pain treatments that should go to seriously ill people. So how does the DEA see a person with pain like any other sick person?

That’s where advocacy comes in. It’s our job to help them see us as victims in the drug war. And, that’s not exactly an easy task! Good patients, good doctors and even good pharmacies have been wrongly accused. And it can take thousands of dollars to prove your innocence. (In the case of patients, the degree of stress involved can also be life-threatening.)

It’s an important issue with no easy answers, but I’m glad we all worked together and got our meeting with the DEA. I think we made an impression by telling our stories and sharing our concern for other people, just like us. Obviously, a single discussion won’t change people’s hearts & minds. That’s why we never give up!

My fellow advocates are incredibly dedicated–doing all they can, fearlessly and tenaciously, for the benefit of all people with pain. I couldn’t be more proud to be a pain advocate!

The above blog entry is part of a week-long series created by WEGOHealth “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

September is National Pain Awareness Month–What Will YOUR Focus Be?

21 Aug

By Heather Grace, IPJ Staff Writer

As August is nearing an end, we at IPJ are wondering what people with chronic and intractable pain will be doing to acknowledge the important month ahead. To many, September is just another month. But to people with pain, it can be a very meaningful and important time of year. September is National Pain Awareness Month.

Will you celebrate this month–being thankful for your continued health? Perhaps you’ll think about how lucky you are to have adequate pain care? Or will you focus on pain advocacy, recognizing that so few people have the pain care they desperately need? Maybe you’ll write a blog, share a video about your experience with pain, or make your voice heard in the media?

Please take a few moments to discuss National Pain Awareness Month here. Share what you’re doing to take care of yourself, as well as what you’re doing to help others. We’d also love to hear your hopes/dreams for the future of pain treatment.

And to all people with pain: We wish you a happy healthy September, filled with acceptance, support and understanding.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The End of American Pain Foundation–A New Beginning for Pain Advocacy

10 May

The American Pain Foundation may have come to an end, but the advocacy efforts of APF’s Action Network will be reborn.

by Heather Grace, IPJ Staff Writer

While I by no means speak for the American Pain Foundation nor the Action Network Leaders, as a Leader myself, I *do* realize what a shock the loss of APF is to people with pain across America, and worldwide. (See APF notice regarding the closing, released May 9.) I think it’s important to note that in addition to the work that is being done to re-home the vast APF database of articles and information as was noted on the APF web site, the advocacy efforts will also continue.

Please know that there are very capable individuals working toward solutions that will ensure the vibrant pain community that existed on APF’s web site(s) is rebuilt. We, as Action Network Leaders are doing all we can to support the rebuilding efforts, as well as our ongoing advocacy projects. Behind the scenes since Tuesday the Action Network, APF’s grassroots advocacy team, have been discussing future plans. The volume of people who have stood up and asked “What can I do to help?” are a testament to the dedication of this wonderful group of advocates.

Even more importantly, we have continued speaking out for the rights of people with pain, and we will continue to do so in every possible medium. We have come together like never before and are determined to continue our work as advocates via Facebook, Twitter, blog/article and interview, to bring a promote a message that represents all people with pain. Each of the Leaders strongly believes that all people have the right to timely, appropriate and effective pain care.

While the loss of APF will be felt for some time, it does not change the dire situation for all people with pain in America nor the need for pain advocacy. Pain is a national health care crisis, a hidden epidemic, and the problem continues to worsen. This is why the Action Network was formed, and continues to grow. We are a dedicated network of volunteer advocates from over 35 U.S. states and Puerto Rico. We are people living with pain, caregivers and health care providers who work collaboratively with other advocates, professionals and organizations to transform pain care in America through grassroots advocacy.

Yes, this is a difficult time for everyone, but I hope all people impacted by pain will see this as an alarm being sounded. If you have the passion to make a difference—please do so. Join this fight. It’s time to stop believing someone else will do it–it’s your cause just as it is my cause. Please show your support via the Action Network California Facebook page. If you feel strongly about the pain advocacy movement, LEAVE A COMMENT ON THIS PAGE letting the Action Network know you are interested in advocacy. We need your help now more than ever!

With all the passion of an advocates heart,
Heather Grace
California Action Network Leader
http://www.facebook.com/APFCalifornia
Twitter: @IntractablePain


Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The American Pain Foundation Closes…

9 May

Posted on the American Pain Foundation web site on Tuesday, May 9, 2012:

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds — have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong.

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