Congressional Letter Builder

Welcome to the Congressional Letter Builder Survey –  from “Your Voice Matters: make chronic pain visible” – 2020

Here’s a good idea to help us write the letters we want to write our legislators. It leads you through a series of statements about your pain and its treatment (or lack thereof) and you can use their 5 choices of “Strongly Agree” to “Strongly Disagree”, sand/or you can write about your thoughts or experiences in the text box below each statement.

We’re so glad you’re here! You are affecting policy decisions and influencing new areas of research. Your voice matters! Your responses will be combined with others and delivered to legislators.  Submissions… will be delivered on bi-monthly intervals.

To be effective, we estimate that 10,000 responses will be representative of how chronic pain affects people’s lives in the United States. Together we make a difference!  

AMA recommends specific changes to CDC guideline

The full AMA letter and each recommendation to revise the CDC guideline – (continued from yesterday’s post)

…the CDC Guideline could be substantially improved in three overarching ways.

1. First, by incorporating some fundamental revisions that acknowledge that many patients experience pain that is not well controlled, substantially impairs their quality of life and/or functional status, stigmatizes them, and could be managed with more compassionate patient care.
2. Second, by using the revised CDC Guideline as part of a coordinated federal strategy to help ensure patients with pain receive comprehensive care delivered in a patient-centric approach. And
3. Third, by urging state legislatures, payers, pharmacy chains, pharmacy benefit management companies, and all other stakeholders to immediately suspend use of the CDC Guideline as an arbitrary policy to limit, discontinue or taper a patient’s opioid therapy.

AMA urges CDC to revise opioid prescribing guideline

AMA urges CDC to revise opioid prescribing guideline | American Medical Association – Jun 18, 2020

Finally! I’m still outraged that the AMA stood by silently for 5 long years as more and more pain patients were deprived of legitimate medical opioid treatment.

They remained silent as law enforcement second-guessed doctors’ decisions and essentially dictated our treatment. I didn’t hear a peep of protest when appropriate medical care was decided by the DEA and enforced by SWAT teams.

So pardon me if I’m not giving the AMA adulation or kudos or praise for doing what they should have done 5 years ago. Their inaction led directly to the suicides of so many pain patients who were deprived of pain relief on the basis of these appallingly arbitrary and misapplied CDC guidelines. 

Disastrous Incompetence at the CDC

The C.D.C. Waited ‘Its Entire Existence for This Moment.’ What Went Wrong? – The New York Times – By Eric Lipton, Abby Goodnough, Michael D. Shear, Megan Twohey, Apoorva Mandavilli, Sheri Fink and Mark Walker – June 3, 2020

I’m gratified to see the New York Times point out exactly what I have been complaining about: the CDC is incompetent and simply not fulfilled its purpose.

Americans returning from China landed at U.S. airports by the thousands in early February, potential carriers of a deadly virus who had been diverted to a handful of cities for screening by the Centers for Disease Control and Prevention.

It was one of the earliest tests of whether the public health system in the United States could contain the contagion.

Needless to say, they blew it. 

CDC Bungling Coronavirus Response

CDC updates COVID-19 transmission webpage to clarify information about types of spread | CDC Online Newsroom | CDC – For Immediate Release: Friday, May 22, 2020

Even when doing the job that’s the entire purpose of their existence (infectious disease control), they can’t stop screwing up. At this critical time, the CDC keeps bungling, over and over, their coronavirus response.

By now, they’ve had to issue retractions/corrections to at least four of their official statements and policies:

1. Mask issue:

At first, they claimed a mask wouldn’t be useful unless you’re sick.

Now they admit mask-wearing is helpful because any barrier at all is far better than none at all. 

Coronavirus: Is it in the Air? An ICU Doctor Talks

Coronavirus #7: Is it in the Air?  An ICU Doctor Talks,- Health Rising – by Cort Johnson | Apr 6, 2020

Is the virus spreading through the air?

…could somebody sneeze, cough or simply breathe, and thirty minutes later infect you if you walk through the air they were in?

Staying aloft that long would require that the virus be present in aerosolized particles (as opposed to droplets) smaller than 5 micrometres (.0002 inches) in diameter. These tiny aerosolized particles can be passed simply by talking and breathing.

On March 27th, the World Health Organization stated that “there is not sufficient evidence to suggest that SARS-CoV-2 is airborne.”   

One-Size-Fits-All Regulations Can Be a Straitjacket

Governors Discover One-Size-Fits-All Regulations Can Be a Straitjacket—The Same Is True With Pain Prescription Limits | Cato @ Liberty – By Jeffrey A. Singer – Mar 2020

The 2016 guidelines for the treatment of acute and chronic pain issued by the Centers for Disease Control and Prevention, like Medicare’s CRNA regulation, were always meant to be optional. In fact, in its opening section, the guidelines state:

“Clinical decision making should be based on a relationship between the clinician and patient, and an understanding of the patient’s clinical situation, functioning, and life context.”

This is the part that everyone is ignoring but will come back to haunt us when more and more of medicine is standardized. This COVID crisis is exposing how disorganized and broken (but always profitable!) our healthcare system is. 

Clinical Challenge: Opioid Tapering

Clinical Challenge: Opioid Tapering | MedPage Today – by Judy George, Senior Staff Writer, MedPage Today March 1, 2020

Too much focus on the pill and not enough on the whole person: that’s a key piece missing in the movement to reduce opioids among chronic pain patients, said Beth Darnall, PhD, of Stanford University in Palo Alto, California.

Some agencies and companies used the 2016 guideline to push hard dose limits and abrupt tapering, which the CDC later said was inconsistent with its recommendations

I notice that this hasn’t changed any of the “wrong” laws, which may be enforced long after the truth is known.  

Pain Needs Patient-Centered and Individualized Care

The HHS Pain Management Best Practice Inter-Agency Task Force Report Calls for Patient-Centered and Individualized Care – Jianguo Cheng, MD, PhD, FIPP, Molly Rutherford, MD, MPH, FASAM, Vanila M Singh, MD, MACM – January 2020

At least these folks see the reality: for pain, both acute and chronic, standard treatment with standard doses of standard medications is simply not medically appropriate. Pain treatment is not suitable for standardization.

Some healthcare services must be personalized to be effective, even when they become much more complicated and difficult (meaning, expensive).

The same people insisting on standard dose limits for opioids wouldn’t think of suggesting standard dose limits for blood thinners or insulin or cancer treatments.

The Pain Management Best Practices Inter-Agency Task Force (Task Force) was convened by the US Department of Health and Human Services (HHS), in conjunction with the Department of Defense, the Department of Veterans Affairs, and the Office of National Drug Control Policy.

Addicts and Pain Patients are NOT the Same

Defining Addicts and Pain Patients as One and the Same, A Moral and Ethical Failure in Policy • CERGM – By R Carter – Mar 2019

Morals and ethics are often used interchangeably, but there are small differences.

• Ethics refers to rules provided by an external source, e.g., codes of conduct in workplaces or principles in religions.
• Morals refer to an individual’s own principles regarding right and wrong

There are two great arbitrators of morality devised by mankind, the State and Religion. Each has a power they use to enforce ethical standards.