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. 

Walk a mile in my shoes: : The FDA and opioid labeling and restrictions, where does the problem really reside?

It is important to set atop the sky scraper, looking down on both sides of the building, weighing concerns in either direction, with the wind or against it.  I have deliberated over the power of addiction from any source, whether it be food, drugs, gambling, smoking, video games, shopping, sex, alcohol.  As I look into the wind and away from it, I question, “Is addiction a behavioral choice or an illness?” “Does restricting opioid medication from chronic pain patients reduce risk or increase it?”

Pain trumps all other basic functions. We are facing a critical turning point in our culture, and the consequence of wrong choices could be devastating. Why aren't we concerned with pain related deaths in this country? Could it be because we are afraid to admit our system is failing?  Will banning or limiting opioids increase the epidemic of untreated, pain? Does the potential for addiction outweigh the risks of not treating pain?

Addiction is the illness not the substance or behavior that feeds it. Have we stopped selling alcohol even though we know it has the potential for abuse and can kill instantly or slowly over a period of time?  Aren't programs like Alcoholic Anonymous a better answer? Is banning certain foods going to stop the obesity epidemic?  Do we treat addictions to gambling, smoking, video games, shopping, or sex by making it illegal to participate in any of these activities? As I sit on this grandiose pentacle, I realize to restrict the use of opioids as a choice in management of chronic pain is not the answer. Relieving pain is necessary; the use of alcohol, playing video games, etc is not. That does not mean I am in favor of government regulation, it means I am in favor of protecting our freedoms to choose how to relieve our pain.

Gaining favor as an alternative to opioids is antidepressants or anti-convulsants which we know create suicidal ideation in some patients, and can cause diabetes and a host of other serious medical problems.  These medications, in the medicine cabinet of a great many homes across America, have the potential for abuse. But why would we deprive patients who need them to function on a daily basis or prevent a very serious seizure disorder? Then I question, why these would be prescribed for pain when many patients report they are only minimally helpful, if at all, or that they come with a laundry list of interactions and side effects, when we already have effective pain medication?  Here we are atop the skyscraper once again.

I ask each person to relive their experience with pain and imagine it on a continual basis with no interventions possible.  Then I ask, “How long could you endure this pain before wanting to end it all?”  Is there any doubt you would be emotionally distraught?  Many pain patients feel alone and abandoned, because they are. Should we not address the emotional, mental, and spiritual affects of chronic pain, and provide education on how to use opioid medications safely and effectively?

We are missing the core problem of any addiction, poor access to mental health programs, lack of funding, and cultural attitudes. I would argue that the epidemic is not the use of opioids to treat chronic pain; the problem resides in our perception.   The days of using words like crazy or addict in a demeaning way should be long gone. The social injustice of ignoring those in need of professional council is the real epidemic. 

Those who take opioid pain medication to improve their activities of daily life and use them responsibly should not be vilified, and neither should those fewer people with a genetic tendency toward addiction. We must ask, before we make the decision to stand into the wind or away from it, choose one side of the building or the other, “Is it fair to deny a basic human right to have our pain treated by restricting access to medications that will help?” Addiction is not a moral collapse, it is a disease, and isn't addiction best treated by professionals rather than withholding the tool of addiction? Can we withhold food, sex, video games, alcohol, tobacco, gambling from everyone, and will that really solve the problem? History tells us from our experience with prohibition, that it will not.

Have we turned into machines worried about numbers rather than human beings? I hope not.