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!  

Evidence-informed Person-Centered Healthcare

Evidence-informed Person-Centered Healthcare Part I: Do ‘Cognitive Biases Plus’ at Organizational Levels Influence Quality of Evidence? – PubMed – Dec 2014

As our medical system tries to implement Evidence-Based Medicine, it’s becoming more and more clear that the “evidence” isn’t the factual unbiased truth we expect.

Introduction: There is increasing concern about the unreliability of much of health care evidence, especially in its application to individuals.

• Cognitive biases,
• financial and non-financial conflicts of interest, and
• ethical violations

at the levels of individuals and organizations involved in health care undermine the evidence that informs person-centred care.  

Pain Specialists Denounce CDC Opioid Guidelines

Pain Specialists Pile on CDC Opioid Guidelines | MedPage Today – by Elizabeth Hlavinka, Staff Writer – Sept 2019

It’s infuriating that three solid years of professional medical criticism, even from some of the people involved in the original writing, hasn’t resulted in the withdrawal or “rewriting” of the CDC guideline.

In the 3 years since the guidelines were published, at least 33 states have enacted legislation that limits opioid prescribing, and although half of these states specify that the new limits are intended for patients with acute pain, many physicians have stopped prescribing opioids to chronic pain patients as well, according to Gary Jay, MD, of the University of North Carolina in Chapel Hill.

In April, the authors of the guidelines stated that the recommendations were not intended to force hard limits of opioid doses, abruptly taper or stop opioid use, or be applied to patients outside the guidelines’ scope, such as patients undergoing active cancer treatment or, in some cases, patients with chronic pain.  

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.   

Illegal drug classifications based on politics not science

Illegal drug classifications are based on politics not science – report | Global development | The Guardian –Karen McVeigh – @karenmcveigh – Jun 2019 

Illegal drugs including cocaine, heroin and cannabis should be reclassified to reflect a scientific assessment of harm, according to a report by the Global Commission on Drug Policy

The commission, which includes 14 former heads of states from countries such as Colombia, Mexico, Portugal and New Zealand, said the international classification system underpinning drug control is “biased and inconsistent”.

A “deep-lying imbalance” between controlling substances and allowing access for medicinal purposes had caused “collateral damage”, it said.  

Patient safety is sacrificed for greater access

Scope of practice expansion: Patient safety is sacrificed for greater access – Suzanne M. Everhart, DO | POLICY | Jul 24, 2019

The job of a physician is to provide the highest quality care to patients, while fostering a relationship based on trust.

There are serious consequences for the health of our patients if that standard is eroded and compromised by well-intentioned, but misguided, interest groups and politicians.

“Misguided” is a nice word for “wrong”  and I have my doubts about anything being “sell-intentioned” when it comes from interest groups and politicians”. 

Abandoning America’s Pain Patients

How Did We Come to Abandon America’s Pain Patients? – Filter Magazine – by Alison Knopf – July 2019

This is an excellent article pointing out exactly how pain patients have been neglected and dismissed by the medical system. Kudos to Alison Knopf for her exemplary work.

Overdoses—not those involving prescription opioids, but of heroin and illicit fentanyl, often combined with benzodiazepines—continue to go up. But opioid prescribing continues to go down.

• Pain patients are untreated and suffering.
• Pharmaceutical companies are being sued and settling.
• Law enforcement is cracking down on providers.  

Are WHO Pain Tx Guidelines just Purdue Marketing?

Lawmakers contend WHO pain treatment guidelines are really Purdue ‘marketing materials’ – By ED SILVERMAN @Pharmalot MAY 22, 2019 – (article at “https://www.statnews.com/pharmalot/2019/05/22/purdue-opioids-world-health-guidelines/” accessible only through subscription to StatPlus)

Just the two first paragraphs of visible preview are astonishing and so infuriating that I’ll just leave you with these two:

Two  lawmakers are urging the World Health Organization to rescind guidelines issued nearly a decade ago for treating pain because they contain “dangerously misleading” and sometimes “outright false claims” about the safety and effectiveness that were orchestrated by Purdue Pharma.

In a new report, the lawmakers contend that the WHO guidelines, which were released in 2011 and 2012, are “serving as marketing materials for Purdue.” And they pointed to efforts by the company to create and fund front groups that participated in research that shaped WHO decision making – and dovetailed with corporate goals to boost use of opioids, such as its own OxyContin pill.

CDC Admits Opoioid Guideline Causing Damage

CDC Director Says Agency Will ‘Clarify’ Opioid Guideline – April 11, 2019 – By Pat Anson – Apr 2019

CDC Director Robert Redfield, MD, has for the first time suggested that his agency may be preparing to make changes to its controversial opioid prescribing guideline.

“The Guideline does not endorse mandated or abrupt dose reduction or discontinuation, as these actions can result in patient harm,” Redfield said in his letter, which was released a day after the FDA warning. “The Guideline includes recommendations for clinicians to work with patients to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.”

I cannot understand why the CDC remained silent so long (almost exactly 3 years). They knew about the harm and suicides of patients yanked off their opioid therapy, they knew it was being used to make laws, they knew many doctors were quitting pain management… yet they said not one word until now. 

Patient Care and Population Health

Patient Care and Population Health: Goals, Roles and Costs –  free full-text /PMC4207028/ – Aug 2014

We should welcome efforts that encourage clinicians to avoid tests and treatments that do not improve health and thereby waste valuable resources

But we should critically evaluate proposals that assign clinicians the direct double responsibility of

1. meeting the medical needs of patients while
2. simultaneously meeting the economic needs of populations.

Why should we be sceptical? For two reasons.