Update: S.483 Ensuring Patient Access and National Pain Strategy

It’s hard to believe that it has been a year since I first made a call to action on S.483. 

A lot has happened since then. The act was signed into law by President Obama on April 19, 2016. That’s right, just last month. In March, the CDC opioid Guidelines went through despite outrage regarding the lack of transparency and biased, non-evidence based reports on opioids that led to the development of the guidelines. The National Pain Strategy (NPS), which was drafted to the Federal Registry last year, was also released in March after a long and concerted effort by many engaged individuals and stakeholders, but not without incident. A comment was added on the NIH Interagency Coordinating Committee website, the HHS committee that drafted the guidelines, suggesting the CDC Opioid Guidelines would help implement the strategy, despite no such reference in the original NPS draft.

The National Pain Strategy

The Pain Action Alliance to Implement a National Strategy is an initiative formed by the Center for Practical Bioethics. My friend, Myra Christopher, contributed to the development of the Institute of Medicine Report on Relieving Pain in America. She and many others knew as a result of that report a strategy was needed to address the problems identified having to do with access to medications and treatments, discrimination in pain care, and the stigma associated with chronic pain. Along  with other stakeholders Myra participated in helping draft the National Pain Strategy (NPS).  Myra and PAINS are now calling on President Obama to see that actions are taken to make the necessary funds available to carry out the plan. The letter is riveting and I hope you will read it. Here is an excerpt.

1.       Immediately direct the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services to develop and, before the end of 2016, initiate a plan across all federal agencies to restore balance between federal efforts to reduce drug abuse and efforts to reduce the burden of pain in order to establish parity between these two critical public health issues…

2.      Designate a specific agency to be responsible for implementation of the National Pain Strategy Report and establish an independent work group, including people living with both chronic pain and opioid abuse disorder and/or family members, primary care providers and specialists who treat chronic pain, behavioral health experts, complementary care providers, third party payers, patient advocacy groups, and bioethicists to…

3.      Direct CMS to establish chronic pain care as an essential health benefit as quickly as possible and to adequately fund:

a.      Comprehensive chronic pain care provided in primary care medical homes and inter-disciplinary, comprehensive pain clinics,

b.      Evidence-based complementary therapies, including yoga, massage therapy, acupuncture, chiropractic and osteopathic manipulation (those therapies specifically listed in the DOD pain report), and

c.      Abuse deterrent opioid formulations.

Can S.483 Work to Support Patients Who Have Been Abandoned?

As a result of the CDC guidelines and reports that the DEA is charging full force, I have received many emails and messages regarding patients being forced to taper off their opioids or stop them completely. Of particular interest is what is happening to patients in Buffalo, New York, but it is only one example of what is happening across the nation. Because I have been overwhelmed and I donate my time to advocacy, I felt the need to provide patients with some guidelines that will hopefully help them make a case to take to their attorney general. Ensuring Patient Access and Effective Drug Enforcement Act of 2015,  S.483, also protects patients and gives you the right to make sure it is enforced for everyone, including those of us who live with chronic pain. 

 “There's a difference between interest and commitment. 

When you're interested in doing something, you do it only when it's convenient. 

When you're committed to something, you accept no excuses; only results.”

~Kenneth Blanchard

Additional Reading:

A good overview of the NPS.

Gosy and Associates to reopen under new supervision. Bridge the gap solution within 75 days, really?

(Signature line appended, March 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

Call to action on S.483 and the National Pain Strategy

Update 5/8/2019: S.483 was signed by President Obama 4/19/2016. An update will be coming as time allows. However, please follow the link to the letter to President Obama from PAINS. While research on addiction is important, we need money allocated to investigate treatments for chronic pain that includes alternative therapies, and yes, opioids. Chronic pain affects far more people than addiction, yet few seem to realize that. We need evidence that will ensure access to medications that are available now. 

Following is my letter to President Obama, my state senators and representatives. Please join me in asking your legislators to pass laws that will provide chronic pain patients the care we need and change how pain is perceived, judged and treated in America.  Let them know you want them to support legislation that coherently and collaboratively addresses all aspects of pain. Let's bring research funding, proven integrative care, and access to medications to the table. Let them know how you want them to respond when legislation passes to them. Send them the letter from PAINS to President Obama, as I have.  You can find contact information for your legislators on my website at: http://www.celestecooper.com/sample-advocacy-letter.html

 
“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; 
they are united by a secret bond.” 

- Albert Schweitzer 

Dear____

As an RN, chronic pain patient, advocate, writer, and published author of self-help books for coping with chronic pain, I ask that you please read the letter sent to President Obama from the Pain Action Alliance to Implement a National Strategy asking him to make the finances and tools available to implement the National Pain Strategy. Chronic pain patients and those suffering from opioid addiction deserve compassionate, effective treatment. I have lived with chronic pain since childhood, having suffered life-long chronic migraine. Now in my “golden years” I suffer from more than one chronic pain condition, two for which we know little about and one that is extensive and inoperable. To withhold the medication that allows me to do the things I write about or to look at me differently because an opioid is the only medication that helps me is inhumane. To make decisions based on media sensationalism instead of reliable evidence is not democratic, nor is it the values this land is supposed to stand for. It is equally deplorable that addicts are kicked out of treatment before they are ready. Mental health care in the United States is not outcome based; it is driven by ability to pay. These things must change, but they will not unless we have your support.

[US Senators]

Please enact legislation such as S.483 introduced by Senator Orrin Hatch, and other legislation that will move the National Pain Strategy forward. 

[US Legislator]

Please support H.R. 471 (S. 483) legislation  introduced by Rep. Tom Marino, and other legislation that will move the National Pain Strategy forward.

Please read:

Letter to President Obama from the Pain Action Alliance to Implement a National Strategy

Thank You

~ - ~ - ~ - ~ - ~ - ~ - ~ 

Also see:

Ensuring Patient Access and Effective Drug Enforcement Actof 2015 - S. 483 H.R. 471 A Template Letter Chronic Pain

Others in support of the NPS: 

• Pain Action Alliance to Implement A National Strategy (PAINS) 
• The National Fibromyalgia and Chronic Pain Association (NFMCPA) 
• The US Pain Foundation    
• State Pain Policy Advocacy Network (SPPAN)   
• The American Academy of Pain Management (AAPM) 
• The American Academy of Pain Medicine 
• Consumer Pain Advocacy Task Force (CPTAF) 

            CPTAF also sent a letter to the Senate HELP Committee 

• Dr. Sean Mackey, Stanford University Pain Research, and Dr. Lynn Webster, Past President of the American Academy of Pain Medicine, author and producer (see interview, here). 
• Other organizations, and individuals, many outlined at the end of the PAINS letter, those who are on the steering committee at PAINS, and those aligned with the CPTAF (also listed at the end of their letter to the US Senate HELP committee noted above).

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Make a Public Comment on the National Pain Strategy by Celeste Cooper

The National Pain Strategy is out. 

You can view it and download it here. 

Public comments on the draft National Pain Strategy must be received no later than 5 p.m. EST on May 20, 2015. Written comments sent electronically are preferred and may be addressed to NPSPublicComments@NIH.gov

Following is mine.

To whom it may concern:

I agree that collaboration between primary and pain specialists is helpful in some cases, though I do not believe it is mandatory, and this is why.

• Many pain specialists are only interested in interventional care.
• Monthly visits for the pain patient who uses a non-escalated dose of opioids over a period of years, for instance, is time consuming and costly to the patient and society.
• Forcing patients into a chronic pain program that have not had any red flags, are not a safety risk, could create perceived stigma where there was none.
• To think that a primary physician cannot complete continuing education courses for management of mild to moderate chronic pain is ridiculous.
• Primary physicians are on the front lines. They will be held accountable for prevention strategies, but they aren’t able to make assessments for treating pain? This seems like tying their hands behind their backs. Board certified family physicians should not be segregated from treating uncomplicated chronic pain independently. Who is better trained in meeting the biopsychosocial needs of a patient?
• Certainly, complicated chronic pain should be under the supervision of a pain specialist, however not all patients meet this criteria, and not all pain specialists take a biopsychosocial approach. It would be interesting to have the data on this and I am grateful you are doing just that.

What I like as an RN and a Chronic Pain Patient

• Core competency in treating complicated chronic pain.
• Addressing the stigma of chronic pain.
• A biopsychosocial model.
• Collecting data that will improve outcome based treatment.
• Recognition of the need for programs that address patients as a whole.
• Studying chronic pain as a disease.
• Advocating for complimentary treatments that work, with the goal of making them accessible to all patient regardless of ability to pay.

Playing Devil’s Advocate

Standardizing electronic records in a free corporate society may not be possible. This should have been planned out before it was ever initiated. I have physician family members who tell me EMRs will not be practical as long as there are so many different computer programs.

Have you ever taken any of the alternative drugs offered? Why aren’t we equally concerned about the abuse of drugs like Neurontin® or Lyrica®? There was not one mention of these drugs in this report. Isn’t focusing only on opioids stigmatizing?

Will all insurance companies be willing to pay for integrative treatments? If not, which is most likely, doesn’t this mean those of us without deep pockets will not be able to afford the complimentary care our physicians expect? It is difficult to get Medicare to pay for TENS units and supplies. But they will pay for interventional procedures, some that are costly to society and have not been proven to bring any lasting effects. How can we curtail spending if we put all pain care in the hands of already overloaded pain specialists?

How can we force private practice pain physicians to adhere to and develop a clinic that takes a biopsychosocial approach to treatment? Is this not a violation of free enterprise of our nation? Not that I don’t agree this is the right approach, but in practicum, is it possible?

How are we to stop the stigma associated with chronic pain if opioids are seen as bad? The patient’s who benefit from opioids, that do not require escalated doses of many years, and do not tolerate alternative drugs, like myself, are not identified in the data. Without this data, won’t chronic pain always have an associated stigma? The last data I saw was that 70% of patients using opioids would not abuse their medications. Can we expect future data on this?

How many overdoses occur from under-treatment of pain? Can we expect a comparative analysis? Why is opioid treatment for chronic pain left out of the conundrum of opioid statement? Isn’t this stigmatizing?

Despite best efforts, chronic pain will exist. When the patient does approach their pain in a biopsychosocial way (I write books on this and practice it), and their pain persists, will they feel inadequate, isolated, and depressed, all the things a multimodal approach is supposed to fix?

Conclusion

Looking at chronic pain as a public health issue is the right approach in my opinion. It will avail resources that wouldn't otherwise be accessible. The report is comprehensive, there will be roadblocks in implementing all the suggestions, but hopefully generations to come will benefit. As an educator, I was impressed on seeing short-term to long-term goals. This strategy provides a mechanism for reassessment and revision.

Chronic pain devastates the lives of people living with it. Patients did not ask to have injury, anatomical defects, or disease processes that create the chronic pain web of deceit. Acceptance is necessary for forward momentum, and that doesn't include just the patient, it also includes their provider, their families, their employers (if they are lucky enough to have one), their friends, and society in general.

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

Website: http://CelesteCooper.com

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.