BREAKING NEWS-SHARE WITH ALL!

Continue to call and write your senators-and all the senators who are members of the Senate HELP committee! Many bills are up for vote, and patients and their families need to be part of the equation! No more about us without us!

FDA Meeting July 9th, 2018:

There were many brave patients and their family members who spoke at the latest FDA meeting:  PatientFocused Drug Development for Chronic Pain”, July 9, 2018. We wish to thank all of you who traveled far and wide to voice your concerns and tell the FDA what is already working well for you.  Our group of former patients of Dr. Tennant included 9 families from 8 different states.  All have experienced life-changing treatments that have brought them back to a functional quality of life, after being bed-bound and in severe pain. There are treatment protocols that are working now! Thank you Kristen for all your help organizing the great turn out of family members and former patients!  It is clear that Dr. Forest Tennant’s work has been groundbreaking and has improved the  quality of life for those suffer the most devastatingly painful diseases known to man.

Among the group was Amy Partridge  who has  Ehlers-Danlos Syndrome and Arachnoiditis. Here is her story that was presented at the FDA Meeting.

“Hello, My name is Amy Partridge. I am an intractable pain patient; I am NOT an addict.

I thought I knew pain; I dealt with chronic back pain for decades.

Three years ago, I learned how bad pain can REALLY be. I also learned how to fight.

Starting in 2013, I had a series of spinal surgeries and epidural steroid injections. During the 6th   and what would be my final injection in 2015, I knew something was wrong. Very wrong.

Over the next 6 months, as my pain spiraled out of control, I saw countless specialists and fought for a diagnosis.

And wow, did I get one: Adhesive Arachnoiditis.

I listened as the doctor explained how scar tissue had grown INSIDE of my spinal cord and that scar tissue was (and is) strangling my nerves, adhering them to the wall of my spinal cord.

Adhesive arachnoiditis is inoperable, permanent, and progressive.

It has been described as the pain of end stage bone cancer, without the escape of death.

It is one of only a few conditions referred to as a suicide disease.

I went from being a mom, wife, and executive at the peak of my career, to spending nearly every moment in a daybed in my family room.

I fought my body to allow me to do even a fraction of what I was once able to do.

The pain was excruciating and constant; one wrong move and it felt like there was a hatchet in my spine. Pain varied from jellyfish stings to a red hot poker being shoved into my hip.

I missed some big events that year: weddings, funerals, and countless functions.

More difficult were the everyday things I missed

….standing long enough to braid my daughter’s hair

…sitting long enough to eat Thanksgiving dinner at the dining room table with my family.

….simple things we take for granted

My husband took over every household chore and my mom helped with errands and driving me to appointments.

My children had to adapt to having a Mom who was mostly bedbound.

Our lives were turned upside down, but I fought.

I fought my mind to accept that at age 38, I was, in fact, disabled.

I fought back tears as I ordered myself a wheelchair and mobility scooter so that I could get out of the house more often…. only to find that I could rarely sit long enough to use them.

I fought for doctors to acknowledge how much pain I was in.

I fought adrenal fatigue, exhaustion and episodes of intense sweating.

I fought for long term disability.

That first year I spent fighting for many things, but mostly I fought for treatment.

I fought side effects from countless medications and therapies that my doctors prescribed; none worked.

I fought to change my diet and I have a one gallon Ziploc bag filled with bottles of supplements that didn’t help.

The pain was SO BAD that I actually asked one of my doctors if there was a way to surgically paralyzed from the waist down…But not even that would rid me of my pain.

There was no escape. No way out. Just pain.

I fought to be seen by one of the only physicians in the world specializing in arachnoiditis.

I left my first appointment (which was 3,000 miles away) with a new sense of hope….these medications WORKED!! And yes, SOME of them are pain medications.

I returned home only to fight the pharmacies who flat out refused to fill my legitimate prescriptions. All medications carry risk. And when you have an incurable condition and spend ALL DAY in bed, unable to truly live, RISK IS RELATIVE.

I then fought the DEA, who raided my doctor’s office and accused us (his patients) of trafficking drugs!!!

I will NEVER be pain free, but with these medications, the pain is manageable enough that I can usually leave the house for an hour or two before I need to lie down again.

Yes, I still suffer from debilitating pain and fatigue. I’ll never work full time again; I still have bad days and miss events. But on good days, I am able to LIVE again!!

But I STILL FIGHT!

I still fight the stigma of being a pain patient; stigma that nearly cost me my life in January when an ER doc was SO convinced I was an addict that he missed the perforation in my colon on the CT scan

I fight for everyone who cannot be here today because their medications have been ripped away.

I fight for the post-op patients being given Tylenol (fun fact: NSAIDs kill more people than prescription pain meds every year)

I fight for my daughters who may some day need pain medication for the Ehlers Danlos Syndrome that I passed on to them.

I fight for morality and compassion and common sense be returned to medicine

I fight for politicians to STOP PRACTICING MEDICINE

We’re not the problem and neither is pain medication. NUMBERS don’t LIE!!

It’s illicitly manufactured fentanyl causing this crisis. We must restore access to pain medication for ALL patients and mandate that physicians treat our pain, and enable them to do so without fear of prosecution.

Our lives literally depend on it. And someday, yours could too.

So, members of the FDA, will you stand and fight with me? With us? Because as Americans, we have the fundamental rights of LIFE, liberty, and the pursuit of happiness. And the last time I checked, those rights exist regardless of what medical condition you have.

Thank you”

Thank you Amy!


Urgent Letter Writing Campaign:

Emergency Proposal for Non-Standard Pain Care

We are asking for your help in a very important letter-writing campaign once again…this time, to ask our US Senators to support 2 specific actions we are requesting:
1)      To support the establishment through regulation or legislation of a Federal program that would allow interested qualified physicians to register and be certified to prescribe higher doses of opioids above the 90MME “suggested standard that has become a de-facto limit” for severe intractable pain patients for whom all other treatments have failed.  This program would authorize trained physicians to treat severe intractable pain as needed without restrictions on opioid dosing or duration of care, and without restrictions on non-oral routes of administration or the off-label use of non-opioid medications.
 
2)      To initiate or support an investigation by the Senate Judiciary Committee, in partnership with the Senate Health, Education, Labor, and Pensions (HELP) Committee, into the unintended consequences of the DoJ/DEA war on opioid drugs campaign and the use of their data analytics program to target physicians and pharmacies based solely on a 2-year snapshot of prescribing data with no contextual information about the physicians or the patients they treat.

The details of our proposed “Federal Certification and Registration Program for Physicians to Provide Non-Standard Pain Care” are provided in a 4-page Position Paper and Program Concept document in the link below.  Please read the 4-page document provided below carefully.  The first 2 pages, Position Paper, provide the problem as we see it, the background, and our rationale for proposing a program to help intractable pain patients get the treatment they need.  Pages 3-4 provide a sample concept of how this program could be implemented.

In order to get more attention and support for the proposal, it is critical that we also push it out and sell it to Senators involved in healthcare issues and policy.  That is why it is so important that we all join in this letter-writing effort to bring attention to the specific situation that all of us, patients of Dr. Tennant and family members, and others across the nation,  are facing at this time and that we do our very best to send as many letters as we can.  We are asking the government to acknowledge the problems that the war against legally prescribed opioid medications has caused for us, and our family members and to take specific action to HELP US!!
Links:

FIPR Position Paper and Proposal to Establish a Certification and Registration Program for Physicians to Provide Non-Standard Pain Care Including Opioid Analgesia

UPDATED:  SENATE HELP COMMITTEE CONTACTS:  HELP COMMITTEE

Sample letters to US Senators and Members of the Senate Judiciary,  HELP, and Finance Committees

Congressional-Directory-115th-Updated 2018-04-23 -Excel

 TIPS FOR SENDING LETTERS TO SENATORS:

1. Don’t send letters by postal service mail to the Senators at their Washington D.C. addresses.  All mail sent to Senators in D.C. is diverted to a special post office to be screened for toxic substances, etc, and it takes about 4 weeks for a piece of mail to get through this process.  If you want to mail a copy, send it to the Senator at their address in the capital city of their home state.  You can find this info on any Senators’ website.
2. The 2 quickest and most effective ways to send the letter and attachment are to fax them and to use email to send them to a Senator’s healthcare staffer in Washington D.C.
3. The 3rd way to send your letter is by submitting to our Senators’ email portals on their websites.  You can write your letter off-line, using the sample, and then copy and paste the words into the email form on the websites.  This is a quick way to send the letter but, most of these portals have character limits and don’t allow attachments, so you can probably only send the letter this way, not the detailed attachment.
 WHAT ELSE CAN YOU DO?
1.Call the Senators’ offices in D.C. and leave a message stating what you are asking for.
2.Call the Senators’ offices in D.C. and ask to speak to their healthcare aid. Tell that person what we are asking for.
3.Try to make an appointment to meet in person with your home state Senators’ staffers at one of their offices in your home state.
Stay tuned for more action steps in the coming days and weeks for more ways you can help.  We will be sending out more suggestions and more sample letters to bring attention to other aspects of the problems for intractable pain patients.

Hot off the Press: Dr. Forest Tennant’s Updated: 

 Self-Help Protocol 8-18

Arachnoiditis Handbook


Dr. Forest Tennant and FIPR: March to 90!

1-March to 90-  New Protocol from Dr.Tennant to Reduce your Opioid Dose

2.-Essential on Your March to 90-Troches- TERRIFIC TROCHES

3.-Research Sources on Natural Pain Relievers- Research Studies

4.-Biggest Barrier to Reduction to 90-  Long-Acting Opioids

5.-Centralized Pain and Neuroinflammation-  Centralized Pain

6. Morning Program -Start your Day Right for Less Pain Morning Program

7. Baseline Pain- How to Deal with Baseline Pain

8. Three Kinds of Pain- Baseline, Descending, and Flares

9. Natural and OTC Pain Relief- Natural-and-OTC-Pain-Relief

10. Step Down Protocol and Self-Treatment of Opioid Withdrawal Symptoms:  Self-Help for Withdrawal and Opioid Dose Reduction 

Check back for more updates!




Gababout Health!!  New web-Blog

 


Newsweek Article-Pain Patients-Genetics- One Size Doesn’t Fit All!

Dr.Tennant Announces his Retirement


Families for Intractable Pain Relief Co-Founder Kristen Ogden presented at the latest FDA Hearing Jan.30, 2018!

New! Here’s the video of Kristen’s presentation on behalf of FIRP to FDA Jan. 30, 2018:
View Slide Presentation-link here:

Final – Families for Intractable Pain Relief 1-30-18 Policies for Opioid Prescribing Intervention-5

Veract Intractable Pain and Palliative Care Clinic mission, goals, and operations and new protocol for medication reduction-links:

VIPC Mission Goals and Operations

VIPC Opioid reduction program 2-28-18

Dr.Tennant’s Latest Statement on Treating Intractable Pain:

By Forest Tennant M.D., Dr. P.H.

January – 2018

The current attempts by a number of parties to castigate and humiliate pain patients and their medical practitioners is not just pathetic and mostly false, it is dangerous to the fate and life of many IP patients. If it wasn’t so serious, some of the claims, biases and beliefs would make good comedy.

First and foremost there has been no discussion about the difference between intractable pain and chronic pain. There really is no bigger issue. The proper identification and treatment of the IP patient is not only essential for the health and well-being of the IP patient, it is a major key to the prevention of overdoses and diversion of abusable drugs. IP patients must have special care and monitoring.

The basic definition of IP is a “moderate to severe, constant pain that has no known cure and requires daily medical treatment”. Chronic pain, on the other hand is a “mild to moderate, intermittent, recurring pain that does not require daily medical treatment”. While there are millions of persons with chronic pain, only about 10% are intractable.

The cause of “intractability” is two-fold: (1) the initial injury or disease which initiated IP was severe enough to cause a pathologic transformation of the microglial cells in the spinal cord and/or brain. It is this transformation that produces neuroinflammation and the constancy of the pain. This process is known as “centralization” or “central sensitivity”; (2) to have enough injury to cause “centralization” one must have a most serious disease or condition of which the most common are: adhesive arachnoiditis, traumatic brain injury, reflex sympathetic dystrophy, post-viral encephalopathy, or a genetic disease such as Ehlers-Danlos Syndrome, porphyria, or sickle cell disease.

Medical practitioners must have minimally-restricted prescribing authority and autonomy to adequately treat IP. For example, the proper treatment of IP not only requires analgesics, opioids and non-opioid, but specific anti-inflammatory, hormonal, and corticosteroid agents that will cross the blood brain barrier and control inflamed and pathologic microglial cells. Treatment of IP has to be individually tailored and may require non-standard, off-label, or an unusual treatment regimen.

Make no mistake about it. The new treatment approach to IP is quite effective in reducing pain, controlling neuroinflammation, and allowing patients to biologically function well enough to have a good quality of life. Also be advised that the new IP approach is not just reducing pain but treating the underlying cause of pain. Consequently, a lot of expensive procedures, therapies, and opioids are no longer needed. As long as I am practicing I will continue to push forward this new approach.

 

 


Dr. Tennant’s Patients live in Fear of the DEA

DEA Tactics Questioned in Raid on Tennant

The Feds Can’t Tell Pill-Pushers from Honest Doctors! 

Dr. Forest Tennant: An Industrious Career Forged in Good Faith


 


 


Great article below from NY Post written by Jacob Sullum about Dr. Tennant’s current situation and the great work he does taking care of rare patients. Please share far and wide, and include it when you write your Senators, Congressmen, etc. Share with everyone! This has to stop, patients are suffering! Thank you Jacob Sullum!

The Feds Can’t Tell Pill-Pushers from Honest Doctors! 

Dr. Lynn Webster comes out in support of his friend and colleague- Dr. Tennant- Thank you Dr. Webster! -Author of The Painful Truth.

DEA Raids the Office of my Friend and Colleague Dr. Forest Tennant 

Thank you Maia Szalavitz! – Author of The Unbroken Brain

DEA Raided This Doctor’s Office for Prescribing High Doses of Painkillers

Dr. Fudin and Dr. Terri Lewis speak out #DropTheTennantCase!

Thank you Dr. Fudin and Dr. Terri Lewis!

Forest is One Tree that will not Fall Without Being Heard

 

Moral Entrepreneurs Breed Righteous Indignation: The Case of DEA vs Tennant

Great Recent Articles from Pain News Network, Thank you Pat Anson and Pain News Network!

Are My Good Years Over?

The Death of Pain Management

DEA Raids Forest Tennants Pain Clinic

FED Assault on Pain Patients Continues 

I Would Not Be Alive Without Dr. Tennant

Tennant Patients Say DEA Attacked a Good Man

DEA Tactics Questioned in Raid on Tennant

Reporter George Knapp from Channel 8 in Las Vegas has done an excellent job telling the other side of the “Opioid Crisis” -how it is affecting those with disabling pain, in the #ourpain series. Thank you George Knapp and Channel 8 I-Team!

Pain Doctor Who Defends Opioids Under Investigation 

#OURPAIN Watch the entire series-patients, doctors, and  pharmacists tell their stories 

Reason TV did a riveting interview of Dr. Tennant and his patients in July and an update on the raid of Dr. Tennant’s office. Thank you Zach Weissmueller!

Meet the Doctor Who Refuses to Stop Prescribing Opioids to Pain Patients

 DEA Raids California Pain Featured in a Reason TV Video

 

Stay tuned for more…

Families for Intractable Pain- FIPR- stands in support for the humane treatment of those with rare diseases and injuries that cause intractable pain.

We challenge policies that have been created that don’t include our loved ones or family member’s complex medical needs, and strive that they be included in all policies going forward. 

We speak out against inhumane treatment and policies that may lead to inhumane treatment of those in pain. We will hold responsible all who work to destroy ethical and humanitarian care, and agree with the United Nation’s stance that lack of pain treatment is cruel, inhumane, and tantamount to torture.

We want to spare other families and patients the hardship and stress we have experienced when trying to find meaningful pain care. Timely care is essential.

We have created a knowledge base that enlightens and dispels the myths and bias against pain, pain-care and especially those who are in need of treatments for their painful conditions. There are many misconceptions around timely and meaningful pain care. Those who suffer from complex and rare disorders that cause Intractable Pain and their families can no longer be ignored. Lives are at stake.

We demand further, ongoing research, and remain hopeful for cures for Intractable Pain. 

Our greatest hope is that all with pain be treated with respect and humanely, and no patient will be left to suffer in pain. Ever.

DISCLAIMER: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We cannot and do not give you medical advice. The information in this website should not be considered complete. Information obtained on this website is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.  If you think you may have a medical emergency, call your doctor or 911 immediately. FIPR- Families for Intractable Pain Relief does not represent to be an authority, please contact your physician. We share information from other organizations, advocates and or websites.