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

Chronic Pain: NPS and the CDC Guidelines Trending on Social Media

Chronic pain topics trending on social media have increased with the release of the National Pain Strategy (NPS) and the CDC Guidelines for Prescribing Opioids. Having submitted comments on both drafts, I felt it was time to express my personal opinions. There are vast differences between the two, even though the “CDC Guidelines” are specifically mentioned at the conclusion of the NPS report.

CDC Opioid Checklist: The good, the bad, and the ugly 

Overall, the checklist is not difficult to understand and physicians will be more likely to use it. Where I do not comment, assume it to mean I don’t see any reason to mention it.

Good Stuff:

·        “For primary care providers treating adults.” - Primary care physicians need guidelines by government agencies so they do not fear retaliation by the DEA. Not all patients living with persistent pain require supervision by a pain specialist; in fact, there aren’t enough pain physicians to meet the needs of over 100 million Americans living with chronic pain.

·        “Known risk factors” – Important assessment.

·        “Prescription drug monitoring program”  (eleven states do not have a PDMP) – You can read what I think about medication safety on my website. PDMPs are good for identifying signs of drug diversion or abuse, which protects responsible people, but will physicians who treat patients with conditions that cause chronic pain, i.e., pain physicians or rheumatologists be singled out? And, how will this affect patient care in states without a PDMP?

·        “Behavioral treatment” – This piece is often difficult for physicians to discuss with their patient’s, and vice versa. However, there is evidence that shows our behavioral response to pain makes a difference in our ability to cope with the fall of of living with chronic pain, and how we respond to it mentally and emotionally can affect our pain intensity. (This does not mean it treats the pain source directly, however.)

·         “Schedule initial reassessment within 1– 4 weeks.” – This should be done any time a new medication is started, including non-opioids that affect the central nervous system.

·        “Assessing pain and function using PEG scale” – This one gets a mixed review. Relieving pain, decreasing the intensity to improve quality of life is the reason we seek pain care. However, quality of life should be assessed according to what that means for each individual patient. For instance, a diseased spine or joint is not going to function better despite pain relief. Q1 is difficult because it relates to an acute pain scale, which is not helpful for assessing chronic pain, especially in a person with more than one pain condition. Q2 reverts back to my comments on changing behaviors. Enjoyment of life is not affected by opioids, it is affected by developing healthy coping skills as is the truth for any chronic illness. Enjoyment of life fluctuates for everyone.  Q3 Improving endurance, i.e. activity, cannot be achieved without therapies that are often capped by Medicare and is not based on patient outcome. And, easing pain will not necessarily result in increased activity. Overall, asking a patient to make their own assessments is important, but placing an arbitrary number (30% improvement) is punitive. Many factors, life situations, can cause the numbers to fluctuate. One cannot assume status quo for chronic pain anymore than they can assume blood sugars will remain constant in treatment of diabetes.

Bad Stuff

·        “Benefits of long-term opioid therapy for chronic pain not well supported by evidence.” – Describe evidence? Anecdotal reports from physicians who specialize in pain medicine are evidence (but they were not represented in the “Core Group” of experts). If they are referring to research, there is no evidence to suggest opioids don’t work for long-term pain care.

·        “Schedule reassessment at regular intervals (≤ 3 months)” – This guideline is not appropriate for patients who do not need advanced pain care. Patients who have been on the same opioid dose for years do not require such close observation. Many patients, particularly the elderly, do not have the ability to see the doctor this frequently, nor is the physician available. To put an absolute time interval (without cause) puts an unnecessary burden on the physician, patient, and insurance, including Medicare, and drives up healthcare costs. This is a total disregard for common sense.

·        “Urine drug screens.” I am not against them when there are signs of abuse. (Perhaps the checklist should include assessment of those behaviors.) However, using drug screens to assess risk without probable cause is offensive for several reasons: they are accusatory (guiltily until proven innocent), they are humiliating, they are not consistently accurate, and they are not always covered by insurance, which is discriminatory against folks who can’t pay. Innocent people are being tortured by inaccurate results, while drug testing companies are making a killing, sometimes literally.

The Ugly

·        “NON-OPIOID THERAPIES Use alone or combined with opioids, as indicated:” – Suggesting long-term use of NSAIDs is not safe, and there is evidence to suggest this. Antidepressantsare not without consequences; they have many drug-to-drug interactions and can lead to suicidal thoughts, they are not always a safer choice. Anticonvulsantsare also abused because of euphoric effects and can have serious side effects like antidepressants. Non-opioid treatments should be considered, but the effects of alternate drugs should not be undermined.

·        “Calculate opioid dosage morphine milligram equivalent (MME).” Every patient is different. It is common sense to taper any drug or treatment to effect, but this particular issue could put a prescribing physician at risk of litigation.  (See Dr. Fudin's opinions.)

The National Pain Strategy (NPS)

“National Pain Strategy outlines actions for improving pain care in America

Plan seeks to reduce the burden and prevalence of pain and 

to improve the treatment of pain”

There are many things I agree with, some that I can tolerate, and others that I felt needed attention. The NPS did have representation by advocates during its draft, and we have all been waiting for it to be released. And, so it has been. You can see and overview and download the National Pain Strategy here.   

“The Strategy provides opportunities for reducing the need for and over-reliance on prescription opioid medications;” this statement disturbs me. I believe the only way we can reduce the need for pain relief is to find a cure for scleroderma, complex regional pain syndrome, the effects of aging on the body, arthritis, fibromyalgia, EDS, myofascial pain syndrome, the centralization of pain, etc. Relieving pain is instinctive to all animals, including humans.

Not including all the stakeholders in the drafting of the CDC guidelines has many advocates and advocacy groups incensed, and rightly so. Public notice of the guidelines was made public for only 3 days. Only after being caught, did they allow our voice. But, despite pleas made by people far better equipped and knowledgeable (and unlike me, able to retain what they read), the CDC published them anyway. The total disregard for our government process - by, with, and for the people - is deplorable.

The CDC guidelines could have been done much better and would have been better received if our voices had been heard. And, it bothers me that the NPS overview ends with this statement, The goals of the National Pain Strategy can be achieved through a broad effort in which better pain care is provided, along with safer prescribing practices, such as those recommended in the recently released CDC Guideline for Prescribing Opioids for Chronic Pain. I doubt many of those who helped draft the NPS were aware of these guidelines being drafted when they participated in the drafting of the NPS. Some of those same people are among those who tried to hold the CDC accountable for their lack of transparency. (Read about it in The Guardian.) The CDC Opioid Prescribing Guidelines are not all bad, but they are written with a discriminatory tone, which is counter-productive to the Institute of Medicine’s report, Relieving Pain in America, available from my website here.

To me, it is more of the same and that’s really is a shame. Persistent untreated pain has biological consequences that are seldom considered, and certainly not here. A great opportunity has been squandered by lack of corroboration, something I value.

You can read my comments to the NPS and the CDC guidelines:

• Make a Public Comment on theNational Pain Strategy
• The CDC Opioid Guidelines:Exercise Your Right to Be Heard

Other blogs of interest:

• Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper
• The symposium "Patients as Teachers," "Clinicians as Learners," a synopsis by Celeste Cooper 
• A Patient Powered Network: Change Agents for Relieving Pain in America (About our group coming together to change the way pain is perceived, judged and treated.)

~ • ~ • ~ • ~ • ~ • ~

"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.