Pain Justice: A Resource For Chronic Pain Survivors

If you are in CRISIS, reach out IMMEDIATELY:
United States:

National Suicide Prevention Lifeline : 1-800-273-8255
Suicide crisis lines are listed by country here.

INTRODUCTION

Sadly, since my blog in 2013 — Walk a Mile in my Shoes — not much has changed. Some might say things are far worse. It’s time for a reawakening of patient centered care that embraces the ethical preservation of our right to choose. It is a moral obligation of all parties that all stakeholders are part of every process when discussing the treatment of pain.

Justice  = the principle of moral rightness; decency.

As a registered nurse, patient, and writer, I feel we are forced to work within a system devoid of a plan for addressing the physiological, psychological, financial, and social consequences of living with persistent pain. I also believe that if we want change, we are obliged to share our unique individual circumstances and our life encounters. It’s time to put into words our desires, needs, and rights as a voice for justice.

I hope the following categories allow you easy access to the resource you need for your particular experience. (Links updated February 20, 2020.)

1. Patient Rights
2. U.S. Government
3. Pain Law
4. Pain Advocacy and Patient Resources
5. Medical Organizations
6. Pain News
7. Additional Resources

1.  PATIENT RIGHTS
 

• The American Civil Liberties Union – Healthcare is a civil rights issue
• Facts about the  American with Disability Act from the U.S. EEOC
• ​​​Equal Employment Opportunity Commission (EEOC)
• Your State’s Insurance Commissioner
• Find Law – Healthcare Rights
• What is Patient Abandonment?​ – NOLO
• Your Rights and Responsibilities - Great resource from The Pain Community

2.  U.S. GOVERNMENT

• The White House
• Finding Your Governor
• Finding Your Senator – Find your senator under the senator tab
• Finding Your Representative
• Finding State's Attorney General
• The Department of Justice  (DOJ)
• The National Institute of Health (NIH contact info.)​
• The US Department of Health and Human Services (HHS)
• HHS Leadership
• The US Department of Labor

3.  PAIN LAW

• Federation of State Medical Boards (Pain care laws by state)
• The US Department of Health and Human Services (HHS) - How to file a complaint and appeal a decision

4.  PAIN ADVOCACY AND SUPPORT

• American Chronic Pain Association
• Advocating Change Together - Center for Disability Leadership and Self Advocacy
• Alliance to Advance Comprehensive Integrative Pain Management (AACIPM)
• American Fibromyalgia Syndrome Association, Inc.
• American Academy of Pain Medicine – Pain in the news
• American Cancer Society
• Chronic Pain Association of Canada
• ​International Pain Foundation
• ​International Support Fibromyalgia Network
• National Fibromyalgia and Chronic Pain Association
• National Organization for Rare Disorders
• National Patient Advocate Foundation
• The Pain Community
• The Pain Connection
• US Pain Foundation
• Western Pain Society​​

5.  MEDICAL ORGANIZATIONS - Pain Medicine

*NIH = National Institutes of Health

• The American Academy of Pain Medicine
• The American Medical Association - Contact
• The American Osteopathic Association - Contact
• The Canadian Pain Society
• Centers for Medicare and Medicaid
• International Association for the Study of Pain (IASP) Other Medical
• National Association of Boards of Pharmacy
• National Center for Complementary and Integrative Health (Scroll to bottom, follow on social media and raise your voice)
• NIH - National Institute of Arthritis and Musculoskeletal and Skin Diseases
• NIAMSinfo@mail.nih.gov​
• NIH Genetic and Rare Diseases Information Center (GARD)
• The National Institute of Neurological Disorders (NINDS) – Search by disorder
• NIH - NIAID – Autoimmune Diseases
• NIH - NIND - Office of Neurological Disorders and Stroke
• Office of the Surgeon General
• ​​NIH Chronic Pain Information Page

6.  PAIN NEWS – Current news, professional journals and patient publications

• National Pain Report
• Pain Network News 

*Many of the advocacy organizations offer subscriptions to their newsletters

7.  ADDITIONAL RESOURCES

• American Society of Pain Educators - Pain educator training for healthcare professionals
• Social Security Blue Book
• What to do if you've been denied appropriate pain management from the U.S. Pain Foundation

“Change does not roll in on the wheels of inevitability,but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man can't ride you unless your back is bent.”- Martin Luther King, Jr.

You can also access this blog from the blog header or in notes for The Pained Ink Slayer page on Facebook, titled Pain Justice: A Resource For Chronic Pain Survivors And Their Families.

Additional Reading:

Fact or Fiction: Chronic Pain Is Always the Same - Slideshow Health Central

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

Ensuring Patient Access and Effective Drug Enforcement Act of 2015 - S. 483 H.R. 471 A Template Letter by Celeste Cooper

Important legislation for the pain community is upon us. Please contact your senators by following this link. http://www.senate.gov/

Ensuring Patient Access and Effective Drug Enforcement Act of 2015
Senate Bill S. 483, HERE
House of Representatives Bill H.R. 471, HERE

An article on H.R. 471 in laymen s terms by PR Web, HERE

RE: Ensuring Patient Access and Effective Drug Enforcement Act of 2015

S. 483 and H.R. 471

Dear Senator __________

Please support the pain community, as your constituents support you, by voting for Senate Bill 483 (S. 483) and the House of Representative Bill 471 (H.R.471).

People living with chronic pain are being greatly affected by their inability to obtain the medications they need to help them function and lead productive lives. We need collaboration between patients, law enforcement, pharmacies, prescribers, advocates, and others to address the problems of addiction, while preserving treatment options and dignity for people who live with chronic pain and manage their care responsibly, the silent majority that do not make the headlines.

Drug monitoring programs have no evidence that they are working, so why are we spending extraordinary amounts of money on these programs? Insurance carriers are refusing to pay for accurate testing, and patients cannot bear the burden of this cost. It is unethical to deny treatment because they do not have the ability to pay. We cannot keep doing the same things expecting different results. Wouldn’t this money be better spent on programs for those who live with addiction? These people are also being underserved because current treatment programs are not based on patient outcome. They are based on ability to pay.

This is just a sampling of the things that can be addressed to improve both addiction and pain care, but it cannot be accomplished without a collaborative effort. Senate Bill 483 and H.R. 471 are steps in the right direction for serving all people in need.

I look forward to hearing how you plan to support the patient community. Please feel free to contact me by phone to discuss this important issue.

Sincerely,

Ph:

Email:

Address