Showing posts with label CDC. Show all posts
Showing posts with label CDC. Show all posts

Saturday, December 23, 2017

Celeste’s Saturday Salutes to Chronic Pain: Issue 6




Celeste’s periodic blog “Saturday Salutes to Chronic Pain” honors the collaborative spirit of fellow bloggers, advocates, and the many friends who share this journey. You inspire me.

SATURDAY SALUTES

Comment: Morphine equivalents are not created equal. @JeffreyFudin ..." the CDC’s promotion of a flawed App for opioid conversion, which may have the potential to cause more overdoses than careful manual conversion when transitioning therapy between opioids!"

Practical Pain Management: A Model to Incorporate Functional Medicine into Chronic Pain Care
Comment: Do you know there are "Seven Nodes of the Functional Medicine Matrix?" I didn’t.

Comment: The truth revealed.

PAINS Project Brief 11: Understanding Chronic Pain and Suicide
Comment: Is someone you love at risk?


CELESTE’S TOP TRENDING PUBLICATIONS



OTHER PUBLICATIONS

*The Advocates Corner – Blogs of Interest at CelesteCooper.com PAINS Project page


ON THE WEB       

Follow along on my Facebook Page
Find previous SATURDAY SALUTES in the archives calendar on My Blog


Thank you guests and fellow pain survivors
October 2017 blog visits - 13,269   website visits – 14,820


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


Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Wednesday, July 5, 2017

Collateral Damage in the Opioid Epidemic


I wish I were writing this blog to report good news. Unfortunately, things are no different today than they were in 2011 when the Institute of Medicine (IOM) report “Relieving Pain in America” was written. Instead, and even though the IOM report spirited the drafting and publishing of the National Pain Strategy, things have gotten much worse. Hardly a week goes by that I don’t read about a fellow patient taking their life because the source of the physical pain was inadequately treated and their emotional pain unbearable because of feeling judged, many times by those they seek for help and support.

The opioid epidemic is very real and I do not mean to minimize that fact in any way. However, it is now painfully obvious that the CDC guidelines for opioid prescribing have not helped those who live with addiction. In fact, the guidelines have led to more deaths, not fewer. The forgotten, stigmatized, and judged, people living with persistent pain are now joining the death toll. That’s why I am sharing this article.If you have been injured, I encourage you to use the links you find in the following letter. Or if you know someone like a recent victim, please encourage his or her family to take action. 


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Find helpful links for finding your senator, representative, and governor; medical organizations, and government health related websites, your states attorney general, your state’s pain care laws and more in "The Advocate's Corner" header of this blog.
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Dear concerned fellow person living with chronic pain,

It is rewarding to write books, articles and blogs to help others manage chronic pain and illness. But coping strategies alone are often not enough. Opioids allow many patients the ability to participate in things they otherwise couldn’t. I advocate for moving complimentary therapies into mainstream but these days, the bulk of my time is donated to the crisis created by limited patient access, if any, to their opioids.

Because of the volume of requests for help and the need to meet the demands for my own care, I investigated information to help you with your personal situation.

It’s important to understand what is happening. Physicians are caught in the middle. The DEA crackdown on prescribing opioids has made them fearful of because of perceived threats to their livelihood. On the other hand, if patient harm results from negligence or abandonment, the provider can be  liable for that too. When a patient is fired, the physician has an ethical obligation to ensure a patient’s care is uninterrupted. However, the DEA, the CDC, the Center for Medicare and Medicaid, and or other government agencies have no liability for the results of their actions. 
We have the ability to hold the right people accountable by providing factual evidence. Evidence includes things, such as:
  • A written letter from your physician stating his/her reasons for stopping your pain care. (If you don’t have one, demand it.)
  • Chronological documentation your physician failed to provide ample notice for finding another provider. 
  • Following are other things to consider:

  1.  Is your physician negligent if no one is willing to continue your care?
  2.  Is your provider fearful to bridge the gap because of the CDC Opioid Prescribing Guidelines or other governing bodies?
  3. Is your provider using the changes as an excuse to abandon care?" Pain that does not abate is a reason to seek medical care, but physicians often feel helpless because treating chronic pain is complex. 
  4.  When the standard of patient care is breached (i.e. abandonment, negligence, or malpractice) and that breach causes harm, there is legal recourse. Currently, three things affect the changing standards, as I see it, (1) the influence of government agencies (2) lobbying by PROP--follow the Phoenix House money trail, and (3) the American Medical Association's decision to cut pain as the 5th vital sign from routine assessment, affecting the standard of pain care negatively.  
  5. Why isn't acupuncture, counseling by a provider trained in pain care, therapeutic manual therapies, or other proven modalities also considered when making changes in the standard of care? Answer: insurance lobbying, another player identified in the pain care market. 
  6. Patient outcome is seldom discussed even though it should be the driving factor of all patient care standards. 

*If you are forced to sign a contract, read it. A contract is between TWO people and may be litigated if either party fails to uphold their part of the contract. The physician’s responsibilities toward your care should also be provided. 

 The laws to protect both the physician and patient are very gray in today’s stormy climate.

  • The physician must  provide evidence as to why they withdraw  care. Yet, some may feel protected by the CDC guidelines. They are not. The guidelines are not LAW!
  • Failure to provide information such as copies of relevant medical records, treatment notes, tests, etc. to those who are continuing your care is a breech. This does not meet patient care standards.
  • Voice recordings or notes in your medical record that the DEA or other government agency created a burden on the physician’s ability to treat pain are helpful for both the physician and patient, but  difficult to obtain unless a case is being litigated.
  • Documentation of refused emergency care, such as treatment, hospital admission for withdrawal symptoms, suicidal ideation, or any other untoward effect is mandatory. (This is not the same as expecting an ER to continue your outpatient pain care.) 
  • Your loved one has committed suicide and there is documentation abandonment or untreated/undertreated pain was the cause. (many statistics are likely skewed because of the inability to collect life insurance and the stigma associated with suicide and chronic pain). 

*As a patient, you also have a duty. If you are unreasonably demanding, non-compliant (i.e. abusing, diverting, or misusing opioids), or threatening to the physician or staff, you are not protected.

If you have been abandoned and have evidence of harm resulting from changes in your pain care, you have recourse thanks to required reporting in Senate Bill S.483, Ensuring Patient Access and Effective Drug Enforcement Act of 2016, signed into law April 2016. [addendum, but is now in jeopardy, 2/6/2018]


Harm constitutes:

  • pain and suffering
  • cost of additional treatment
  • loss of earning capacity, and
  • loss of the ability to enjoy life

If you have sufficient evidence, please submit it to the attorney general for your state, which you can find at  NAAG | Who's My AG?   If anyone is providing evidence on someone else’s behalf make that disclosure and provide contact information.

Remember, if it wasn't documented, in didn't happen. Gather your arsenal and become empowered. Record what you can, when you can. The attorney general needs concrete evidence to move forward. Make sure they know you know they are required to report your case as part of S.483.  [addendum, which could now be in jeopardy].  I suggest sending a copy of your letter to your attorney to those you feel are appropriate. Be sure to mention the pain care laws for your state (link is courtesy of the Academy of Integrative Pain Management, SPPAN) or by typing “your state’s name state law on pain care” in your browser search engine and select from the results.

Because every case is different, each of us must demand our rights to be treated with dignity and respect. There is opportunity in adversity. Rome wasn’t built in a day, nor will our cries for help be solved quickly, but we must have hope. Despite what many think, those in chronic pain are tough. We overcome hurdles on a regular basis.

I recommend joining an advocacy group to help you stay abreast of recent newsworthy information and/or fight for our rights in Washington.

See The PAINS Project for links to their steering committee members for additional information. 


In healing,,Celeste


(Signature line appended, April 2018)


Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!



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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Wednesday, February 22, 2017

Take Action NOW if you are a Medicare or Medicaid Patient taking Opioids for Pain


CMS to make CDC "Opioid Guidelines" policy

Friday
MARCH 3, 2017

As stated in my article Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain, there are drastic differences between a policy and a guideline. Is the CDC acting in good faith? Why are the Centers for Medicare and Medicaid Services (CMS) morphing a guideline into a policy, potentially putting millions of taxpayers in harm’s way? They have not been properly represented. Is CMS aware that the CDC did NOT consult with all stakeholders or do an in-depth literature review or follow any of the other policy procedures set by our government? My biggest fear is that the CMS is basing their decisions as though the CDC guidelines are already a policy. They are assuming the statistics they received are unbiased. See Why should we hold the CDC accountable?

The following is an excerpt of an article written by Rick Martin, Guest Columnist for Pain News Network. You can find his letter here. Please comment to the Center for Medicare and Medicare Services.

Change takes work if the pain community is going to stop the Centers for Medicare and Medicaid Services (CMS) from making the CDC’s opioid prescribing guidelines mandatory for millions of Medicare patients, including a ban on daily doses higher than 90 mg morphine equivalent (see “Medicare Planning to Adopt CDC Opioid Guidelines”).

We don’t need CMS and the insurance industry dictating what medication a physician can prescribe for pain or the appropriate amount of medication needed (see"Insurers Behind Medicare's 'Big Brother' Opioid Policy").

Rick asks that we share with at least 10 people and ask them to share with ten more. I decided to share my letter with everyone in my social networks via this blog. Surely, ten of my many friends will keep the ball rolling. Rick gives his permission to use his letter, and you are certainly welcome to use mine.

---Begin---

CMS at this email address: AdvanceNotice2018@cms.hhs.gov

Subject line: CMS Disregard for Governmental Standards in Policy and Procedure-Putting Patients in Harm's Way

To Whom It May Concern:

Let the record show that I, Celeste Cooper, oppose the Centers for Medicare and Medicaid Services’ plan to align its policies with the CDC Guideline for Prescribing Opioids for Chronic Pain. The “Guidelines” did not go through the required process for policy development, and many feel they are biased. We as citizens, taxpayers, and people living with chronic pain were not represented fairly, nor was ALL the literature reviewed or processes followed that were put in place to protect consumers from the consequences of prejudice.

“Guidelines” give physicians and other licensed prescribers the discretion in determining what is right for their patients. However, your policy as presently drafted will make the guidelines mandatory for doctors, patients, and pharmacists. And, what are the provisions for end-of-life and cancer pain?

On June 1, 2016, Dr. Debra Houry, Director of the CDC’s National Center for Injury Prevention and Control, wrote the following:

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain. Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”

Why would the Centers for Medicare and Medicaid Services (CMS) try to adopt a guideline as a policy? This has the potential to put millions of taxpayers in harm’s way, because they have not been properly represented.

Advocates have shared their concerns over favoritism in the drafting the CDC Opioid Prescribing Guidelines of favoritism in drafting the CDC Opioid Prescribing Guidelines. (See links to reports below.) My biggest fear is that you, the CMS, are basing your decisions as though the CDC guidelines are already a policy that has met the standards of law. You are assuming the statistics reported in the CDC Opioid Prescribing Guidelines are unbiased.

Can you in good conscience implement a guideline as policy when it has not met the test set forth by our government, for and by the people?

Sincerely,

Celeste Cooper, RN, advocate, Medicare person living with chronic pain


Reports:

American Academy of Pain Management Statement to the CDC on the Opioid Prescribing Guidelines
Richard Martin, RPh, U.S. Department of Health and Human Services, June 1, 2016 pdf
https://static1.squarespace.com/static/54d50ceee4b05797b34869cf/t/578e661603596e40a74db59e/1468950040230/Houry+letter.pdf  (accessed thru Pain Network News, CDC: Opioid Guidelines 'Not a Rule, Regulation or Law'
A Former Federal Peer Reviewer’s Analysis of the Draft CDC Guidelines, National Pain Report
Congress Investigating CDC’s Opioid Guidelines by Pain Network News
Shared at the Addiction Treatment Forum
Congress Investigating CDC’s Opioid Guidelines

---End---

BCC:
U.S. Pain Foundation:  contact@uspainfoundation.org 
National Fibromyalgia and Chronic Pain Association info@fmcpaware.org
American Chronic Pain Association:  acpa@theacpa.org  
Alliance for Balanced Pain Management:  info@alliancebpm.org

I also sent a copy to my senators and legislator., which had to be done on their contact form.

Find your senator https://www.senate.gov/
More links can be found on my website via http://www.celestecooper.com/advocate.html

In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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.


Friday, December 30, 2016

Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain



2016 has provided many changes in the way pain is perceived, judged, and treated. Unfortunately, some changes have had dire consequences for those living with chronic pain.


The CDC Opioid Prescribing Guidelines

There is little doubt that the CDC opioid prescribing guidelines for primary physicians have affected Americans living with chronic pain.

As suspected by advocates, the CDC's opioid prescribing “guidelines” have been perceived by many as a CDC policy, when they are NOT. 

 “Policy’ is defined as a law, regulation, procedure, administrative action, incentive, or voluntary practice of governments and other institutions.”

In a Medscape article, New CDC Opioid Guideline: The Good, the Bad, the Ugly, Charles E. Argoff, MD dissects the CDC Opioid Prescribing Guidelines, asking many questions that would have been posed during the development of a CDC policy, had there been one. As Dr. Argoff suggests, there are some very good things about the guidelines. But, other important deliberations were not included. It is my opinion that the CDC made a grave error when they ignored their own policy process, which requires rigorous investigation, planning and implementation on public health issues.

Why does it matter?

There are drastic differences between a policy and a guideline. Look at the wording for the “Prescribing Opioids for Chronic Pain Workgroup (Opioid Guideline Workgroup)”, of which some people had an undisclosed conflict of interest. These folks had the liberty to handpick “evidence” to prove their own opinion, ignore concerns brought up by other workgroup members, and publish them without advanced notice for public comment, an action that left many to distrust the CDC and their agenda. Advocacy groups pushed back until the CDC reopened a comment period, but it became evident it was an exercise that would have no effect on the guidelines; they continued to  ignore the voices of all the people. 

So, we are left wondering why the CDC, a government agency that focuses on public health, wouldn't  follow their own policy development protocol and include all stakeholders. 

I doubt the CDC set out to harm so many, but their guidelines have. I hear the cries of abandoned patients kicked to the curb to suffer withdrawal without help. And, others who are being weaned only to have their pain return to catastrophic levels, because physicians have suddenly done an about face. I have read the stories of family members raising their voices to let people know their loved one took their own life because these guidelines have led to the denial of access to moral and ethical care. If you or someone you know has been harmed, please see  HELP - Guidelines for Pain Warriors.

Look Forward

Leaving 2016 in our review mirror, let’s look toward 2017 with hope. The guidelines have been met with great scrutiny. There is opportunity in adversity. I am grateful for Dr. Argoff and many other physicians and advocacy groups who speak up for patients and their care. 

In healing,,Celeste


Other reading you may find helpful:




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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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.  

Wednesday, May 25, 2016

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:
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!

Tuesday, January 5, 2016

The CDC Opioid Guidelines: Exercise Your Right to Be Heard


Many of you may know I am recovering  from pneumonia, so in an effort to care for myself, I have not been blogging, but this is perhaps the most important advocacy topic of this month. Holding the CDC accountable for questionable behavior and making our voice heard!


Why We Should Hold the CDC Accountable

We deserve to be heard, but the CDC tried to slide their guidelines under the radar, calling them "guidelines" knowing they would be embraced as a policy without having to undergo the rigorous process of establishing a policy. As taxpayers, we have a right to transparency, which they did not provide. Please take a moment to read my dear friend, Myra Christopher’s blog on why this is important to those of us living with chronic pain.


Holding the CDC accountable and providing this opportunity to comment is in large part due to Myra and the PainAction Alliance to Implement a National Strategy

You can read my comment, which was kindly shared by the National Pain Report. My Story: Has the CDCConfused Addiction and Tolerance?


How to Comment

Commenting on the CDC Opioid Guidelines as part of the docket is a valuable opportunity to protect our rights as people living with chronic pain. So please, I am begging you, and I seldom do that, leave your comment, get your docket number, your comment only counts when you do this. Use  the link, just click on the comment button IN THE UPPER RIGHT HAND CORNER. You can remain anonymous. 

As of this writing, January 5, 2016, of the 100 million people who live with chronic pain in America, only 1,793 have commented.



Open Comments

Another opportunity has arisen, an open conference. My friend Myra Christopher has to say. "It is important for CDC to get this right, and they need our help to do so.” 

The following provided by the National Pain Report

Centers for Disease Control and Prevention (CDC) is hosting a public conference call on its controversial Guidelines for Prescribing Opioids for Chronic Pain Thursday, January 7, 2016, at 9:00 am ET. The public can participate via a conference call.  The dial-in number is: 1-888-395-7561, and the Participant Code is: 3954121.

I may be weak, but I am not done! We the People-ALL the People

Since our Congress questions the CDC’s authority to infringe on our Constitutional rights as stakeholders in this issue, and as citizens of these United States, shouldn’t we too! Read the National Pain Report article, Congress Questions CDC: Who Drafted Controversial Opioid Guidelines?


No one understands the effort it takes better than I do, and what I also know is that under no circumstances is procrastination our friend. Please do it today.

The deadline is January 13th.



We are not alone. Read the comments within the article Pain Advocates Urge Patients to Comment on CDC Opioid Regulations 



~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

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

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

Celeste's Website

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