Open Letter to the FDA From a Chronic Pain Advocate

Open Letter to the FDA From a Chronic Pain Advocate

FDA needs to follow existing FDA protocols and stop being driven by the prevailing winds from political forces. FDA is the final authority on regulation of drugs and should not be second guessed people who do not understand medicine and science, much less attempt to superimpose layer upon layer of regulations on top of existing FDA prescribing guidelines tailored to each pain medication.

CDC is trying to drive policy based on their poorly written and poorly understood 2016 Opioid prescribing guidelines, proving themselves incompetent and not grounded in the best interests of the US public, especially not in best interests of chronic pain patients who depend on analgesics for quality of life. CDC has castigated the US chronic pain community and destroyed the lives of millions of honest, law-abiding victims in hospice, with cancer, with sickle cell anemia, with auto-immune disorders, the disabled, the elderly, and the most unfortunate citizens in our nation. These are the people the government is supposed to stand up for and help, not drive to suicide or street drugs, which is in fact what is happening now and consequently overdoses are going HIGHER. If you keep cranking down on regulations and the problem gets worse, isn’t that a sign you are fundamentally taking the wrong approach? Is it not a sign of insanity to keep doing the same thing and expecting a different result? Why not insist that the CDC revoke the 2016 guideline that has not served the public interest in any way, shape or form?

Jeff Edney

FDA alone is the authority, yet we now have the CDC, PROP, 50 state governments, US Congress, US Senate, President of the United States, and even certain members of the media all trying to force additional, overlapping, burdensome, contradictory, politically motivated and unscientific regulations on opioids. The US government needs to get out of the doctor’s office and leave it 100% up to the FDA to regulate and approve what medicines are on the market. FDA’s full prescribing information already contains limits and conditions and guidelines tailored to all drugs, and that is all that is needed. All other parties need to frankly butt out, because not only are they misinformed of the facts, their politicized guidelines have caused death and misery for chronic pain patients while not helping addicts whatsoever. Sheriffs routinely report they are not seeing prescription drugs found on deceased overdose victims, but instead see illicit fentanyl, heroin, and other illegal drugs such as methamphetamines for at least 8 years now.

Can’t CDC and others outside FDA see their own data doesn’t add up? A recent study concluded that 1.3% of overdose fatalities were caused by patients taking their own prescribed opioids. So 98.7% are due to illicit drugs or illegal activities. Pounding that 1.3% down to 0% is more likely to kill hundreds or thousands of times more as disabled and elderly patients who are suddenly thrust onto the street buying heroin for pain relief and getting God knows what in their Cartel provided medicine. How about we do something right for a change, instead of driving good people to end their lives via suicide or become criminals?

If that is what our society has decided to become, perhaps our nation needs to dissolve and let each state become independent, because our federal system is not helping people who need help the most, it is in fact crucifying, torturing, and driving people who worked their entire lives to support this nation into a state of insanity because everyone proposes regulation du jour. Such gross ignorance and negligence has caused the greatest atrocities in the United States since the Civil Rights movement. Is that the kind of nation we want our children to inherit? And while this is going on, the illegal drug trade is growing stronger, and Mexican importers and Chinese producers are laughing all the way to the bank while standing back and watching as America burns.

For the Love of God, please stop this perpetual going in circles and pushing the federal government to “JUST DO SOMETHING” whether it makes sense or does not. FDA has held enough meetings, task forces, written reports, etc. Doctors are more confused than ever, due to the hundred or so organizations trying to influence prescribing policy. How about say, NO MORE? We have enough guidance in existing drug literature and enough is enough. The 2016 CDC guidelines were based on zero long term studies and the 2019 report added only 1 narrowly scoped “long term” study, based on a 600 mostly male veterans with osteoarthritis. No reasonable scientist would dare mandate policy on such limited, narrowly scoped study, where one group was provided low dose opioids without titration (<40 MME) and the other received NSAIDs and it is well understood both can improve arthritis. Then throw in the fact that tramadol was not even considered an opioid in this study, so how could anyone attempt to use this one study to define opioid regulations that apply regardless of disease, body size, age, degree of pain, gender, duration on analgesics, drug metabolisms, comorbidities, that all vary individual by individual?

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Authored by: Jeff Edney

Jeff Edney is a member of the Alliance for the Treatment of Intractable Pain. Jeff is a former Director of Engineering (disabled), chronic pain victim & advocate and is married with pre-med son.

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Kim Buchholtz

THANK YOU JEFF EDNEY FOR ALL YOU DO.💞

THE CDC are dragging their feet while our LIVES ARE at STAKE. They know we are KILLING OURSELVES BECAUSE of BEING DENIED PAIN MEDICATIONS. This should of been taken care of along time ago what’s the real reason they are doing this to US. It just doesn’t add up..This has to put every CHRONIC PAIN PATIENT into Tramadic STESS syndrome and CAUSED heart attacks. I’ve lost all my muscles AND STRENGTH because of BEING in so much UNBEARABLE PAIN. I can’t do ANYTHING ..
THE CDC KILLS INNOCENT PAIN PATIENTS AND THEY ARE RESPONSIBLE FOR ALL THE SUFFERING AND SUICIDE DEATHS ,HEALTH PROBLEMS PHYSICALLY EMOTIONALLY AND MENTALLY 💔💔💔

Joe

How disgusting that an ad for Sublocade is at the bottom of the page…

Jen my e-mail is: sweetypie78@verizon.net , Steven I am praying for you, I know how hard it is to hold on, I too get down in the dumps when the pain pushes me to the limits and there is no help to be had. Please hold on, I am praying strength for you as well as pain relief. Margie that was me who said several articles back that my doctor told me that chronic pain people are being experimented on. Before a surgery an anesthesiologist told me that the government forced the doctors to experiment on us to see what would happen if our pain meds were taken or reduced. He told me to ask my doc and at my next appointment I did ask my doc and he admitted it. This same doctor later on ended up taking my meds and trying to assassinate my character. I now have no treatment at all. I also wrote a long time ago that this so called opioid crisis is a multi headed monster with a dark agenda and that when you want to hide what you are really doing you create a ruckus to divert from the real thing you are trying to do. I believe what that first doctor told me about the experiment on human beings.

Mary

Great Article. It is incomprehensible to me how we have gotten to this place of complete utter insanity surrounding legal Opioids. We have the well known anti-opioid group PROP fueling & Driving the ignorance & utter hysteria, this same group is driving all these rigged cherry picked “Studies” to fail Opioids on every level for everything from common back pain to osteoarthritis and everything in between. Allowing known anti-opioid PROP members and addiction Specialists to write “Nationwide Opioid Guidelines?” Those Guidelines were written improperly without following protocol or standard procedures before being released to the Public but to date have yet to be revoked. PROP should be nationally named as nothing more than an anti-opioid U.S. “Terrorist Organization” They have harmed & killed thousands of people with their blatant lies, falsification of numbers and data all to fuel their anti-opioid agenda. Nothing and I mean Nothing that the members of PROP put out in regards to “Studies” or “Data” or anything else for that matter should ever be published or taken seriously by the medical community or anyone else. Everyone in that Terrorist Organization should be “Banned” from the practice of medicine for all the harm, deaths, lies, and falsification of cherry picked data & studies to meet their own anti-opioid agenda. I just saw yet another paid cherry picked study that known PROP member Roger Chou worked on and guess what!? That rigged “Study” also failed Opioids. Surprise! What a great idea to continue to allow members of this group to be part of EVERY New Opioid Study! What is wrong with this country?

For the “life” of me, I do not understand why “we patients” are NOT “attempting” to work as a group. There is power in numbers and yet all I have seen are a few rallies that get very little if any attention. Everyone seems to be waiting for some organization to solve this for us, Most of us are not able to get to the outside world to be heard but there are so many other things we could be trying from our homes as a collective group. Praying is one way but it is not going to resolve THIS problem, FREE WILL is what is allowing this, not God. God helps those who help themselves….? I have put out my personnel e-mail so that we might start to communicate (one would have to type it out yourself for an e-mail to be sent. I am by no means a leader but am sure many brains together come up with ideas that have not yet been tried. The longer we WAIT for someone else the closer we all come to our own death.

Janice

What a well thought and worded response . It is so difficult to see our medical professionalism implode like a watermelon. Stay strong folks. It’s so hard for so many.this just has to get better. Fight the good fight I know it’s hard. May God watch over all in pain n in this time of trouble..

Misti

7 yes 7 suicides in the area in which I live all disabled vets and chronic pain patients who were mistreated by not getting treatment 2 military vets,1 single Mom her daughter is a orphan now her Dad died from cancer 3 years ago her aunt has the child now, 2 young men under age of 24 gone another fatherless child of a toddler, a Father of 7 children recently divorced had Lyme’s…a woman with migrains that she never was give relief from.
If Gov is wanting CCP to be the budget cut then it is a fail because these children get all sorts of money help now from State and ,Federal where as several people were able to work with treatment when it was stripped their ability to work they could no longer cope.
The only way those over reaching their power so CCP can get help, heard or able to understand Pain is if they are in CCP shoes…..or watch a loved 1 suffer.

This site while good for updates and for patients not to feel alone but we patients need to communicate with each other so that WE can collectively fight together. I am going to leave my e-mail address to see if this site will allow us to communicate amongst ourselves or if it wants all control. e-mail tasseltails@aol.com

https://rsds.org/your-pain-your-rights-dealing-with-your-physician-and-your-hospital/
This is the site I just posted from but do not see it all here so this may benefit and answer some questions I am seeing on this site.

conscientious person.

Ask for a meaningful referral. Tell your prescriber you will need his help in finding another physician and you have a right to his assistance. Get your records and review them carefully. Federal privacy law (HIPAA) requires your physician to provide your records promptly and to charge you no more than his actual costs of copying. It also allows you to have your records corrected if they contain errors. Review them for accuracy and look closely at what they say about the reason for termination. Phrases like “drug seeking” or “possibility of abuse” will hurt your efforts to find another physician. If he has used these phrases, write him a letter, preferably through an attorney, and use the words “abandonment,” defamation” and “emotional distress” if the attorney confirms that they are appropriately used in your state.

File a Complaint with the State Medical Board. Every state has a medical board that reviews all complaints and takes action when necessary. Only two state boards have disciplined any prescriber for under treating pain, so it is not possible to see this yet as a meaningful remedy. However, as more complaints are made and individual physicians show a pattern of patient abandonment, state boards are more likely to act.

State board complaints are not complicated. You do not need an attorney, but if you have one, take advantage of his advice. The forms themselves are simple and straightforward and are available on your state’s website. You can also order them by phone. Make your complaint more effective by writing a clear statement of what happened to you and any difficulties that you are having in finding another physician. Avoid a long, rambling statement. It may help if you number each paragraph and tell your story chronologically. If possible, have someone else read it to make sure it seems clear.

Do not feel limited by a form that does not allow much space for your comments.

Explain the emotional and physical impact of the te

Robert Crandall

I’ve had it with this whole freaking mess. Every month my Dr. At my pain clinic tells me there are new guidelines that he must abide by or he will lose his license. And they all entail tapering my meds that I absolutely need in order to survive. He changes his story at every appointment, but I have no choice because the Gestapo DEA has closed every single provider except this one clinic and are prosecuting most of the Drs. On trumped up charges. It is illegal and immoral to lie to us, persecute us and cause us to be tortured all in the name of you must be an addict. I have extremely serious auto-immune nerve destroying disease. The pain in my arms and legs is excrutiating with no hope of ever getting better. I am practily in tears now at every appointment. All of my medical records say from the specialists that I am in intense pain but if I complain I am told that I do not have the right to complain and if I do I will be dropped from care and labeled a “troublemaker”. There are no other clinics in Anchorage, Alaska. What I want to know is why aren’t we mad enough yet to file class action lawsuits against every federal agency, our state licensing organizations and the Drs themselves?? The only language that any of them understand is if we threaten to take away their money. You think your Doctor is a good guy but yet he caves to iutside pressure and enjoins himself directly to your suffering. And why aren’t we marching on Washington until they LISTEN to us??

This will open everyone’s eyes to how bad our Healthcare has become due to government reach. Forbes article titled electronic medical records and Hospital man’s fourth best friend. The Obama created EHR and it has created deaths to patients, misdiagnosis, transcription other people’s medical records onto yours. FDA was booted out even though they wanted to have control of it to keep these things from happening but the government said that the FDA not need to be in control of this so 15 billion dollars later it still doesn’t work. It has led to physician burnout an early retirement of doctors. It talks about corporate greed.

David Hickle

I don’t care anymore about the state of Ohio USA this nation America politics democracy liberal republic government presidents the USA system and the entire health care system every doctor er specialists hospital urgent care mental health care system minute clinic because every time I seek help from them all I receive and get is mistreated I plan on leaving moving fleeing the state of Ohio USA this nation America next year in spring or summer i plan on moving to the United kingdom permanently

Lynda

Jeff, this an outstanding article, with a common sense response to the unreasonable reaction to the CDC & PROP propaganda. It is succinct and to the point. I’m having trouble getting effective treatment for a new chronic pain issue, because doctors are being pressured & inundated with erroneous information. I only hope & pray SOMEONE who can make an impact on this unfounded craziness will act on it. I agree, we need this letter to go viral. Can I have permission to copy & send to my congressmen & newspaper. Thank you for your unending advocacy for chronic pain patients.

Joy R Louters

Thank you so much Jeff! Here’s something else all pain patients need to know. I actually had a urine drug test sent back to me as having a trace of morphine in it. I hadn’t had any morphine for over 2 months. I was the one who asked to be taken off it. So, my doctor and his NP came into my room and chastised me, both at the same time,for taking the morphine though I reminded them that them all, one told me that if I had been on morphine for a long time (I was on it for ten years) then it could show up in the test.

I called my doctor’s office and told them what I had learned. When I returned for the next appointment, my doctor said nothing about the information. I brought it up to him and he said it is not possible for the test to be wrong. I have a difficult time believing that. They ousted me from the practice that day so I am now existing on Advil and muscle relaxers. They will kill me far sooner than the pain medication.

Yes, living for me is horrible right now and I have had thoughts of suicide I am not living, I am existing. That’s all.

Steven

In pain and cannot hang on any longer.

Sandra G.

Thank you so much for your perfect letter. I wish I had the cognitive initiative to write myself. I’ve been on the same medications for “Central Pain Syndrome” which I have as the result of a right thalamic hemorrhagic stroke in 2001. It’s burning, aching, stabbing and more pain than I can describe. I worked over 35 years as a legal secretary and now cannot even write a simple letter. I had Scoliosis surgery for a deformed back that progressed to 56 degree curve from T3 to L5-S1 Ilium just 6 years ago and still have pain now with a back of Rods, Metal and Screws. And I’ve had heart surgery. I am in constant pain since my medication has been cut back and as much as I try not to complain, apparently it is written all over me, I spend more time in bed and without my husband, who has health issues himself, I don’t know what I would do.

I so appreciate you explaining this horrific problem we all face and again, thank you so very much.
Sandy

Barbara M Maidment

SO well articulated–I am SO ANGRY with these slimebags who arbitrarily dictate to the rest of us who suffer with CHRONIC SEVERE PAIN! STOP THIS INSANITY OF THE GOVERNMENT DICTATING TO THE DOCTORS WHAT THEY CAN AND CANNOT PRESCRIBE! PURE BS. We all expect them to take the Hippocratic Oath–and then our LEGISLATORS tie their hands to PRACTICE it! If they suffered with FIBROMYALGIA, and had 9 back surgeries–including 4 fusions with hardware, and also had 2 knees needing replaced for the past 14 years, and OSTEOARTHRITIS as well, MAYBE–JUST MAYBE they’d view the SUPPOSED “OPIOID CRISIS” altogether DIFFERENTLY!

I honestly think I’d be a good one to stand before CONGRESS and testify about this subject…and I’d be willing to do that, if it would help all of those who are suffering in the same way as I am.

TG Smith

Such an eloquently worded letter, emphasizing the UNJUST manner in which Chronic Pain Sufferers are stigmatized, marginalized & de-humanized. We have been made the scapegoats in the failed govt attempts @ the War on Drugs. Unless & until the “overlord” control is relinquished & Dr./Patient relationship returns to being PATIENT focused & confidential, our Quality of Life will continue to suffer immensely. Govt & Insurance Cos (unfortunately) now DICTATE our treatment & therapeutic modalities more so than the Healthcare Providers we entrust our well-being unto.

Chereese

Great work, Jeff Edny.
What you wrote is the truth.
The CDC guidelines are fatally flawed and should never have been released.
I might add that our insurance companies and pharmacies are also playing the role as M.D..
This is wrong, dead wrong, and must not be allowed.
Too many lives are at risk.
So many have already died.
It’s insanity our government has allowed this continue.
In fact they continue to make it harder to get meds, like you said.
Prohibition only brings in more crime ans illegal deadly street drugs.
The Drug Cartels are loving it however.

This is the BEST LETTER I’ve ever read from an advocate. I shared it to hundreds including our President, congressman, Senate, media etc. So wish I had these kind of great vocabulary. God bless u n thanks, brenda pitts bennett. Read a little of our battle by typing in my son’s name….Chad Ray Bennett. DOB 4-6-74

Bruce

You left out the DEA, which threatens pain doctors and revokes their licenses on a regular, expanding basis. It’s time we got nasty with them, because they clearly don’t respond to “I got my medication cut back, how am I supposed to survive, I’ve never abused opioids” etc. etc. where they could really care less. We need full throated anger to expose their simple-minded control paradigm on the order of a communist dictatorship. Kick some ass, Jeff! I’m here if you need me! Lets crawl up their backsides and STAY THERE until we get some help. I’m not going to let these idiots kill me. Not without a huge fight.

All of this information should be flooding the media in every possible way, why are we trying the reason with the very people who ARE INTENTIONALLY killing us. We, the patients …need a way to connect with each other so that we can act in big numbers at the same time. Has anyone ever even seen a single petition for us?

I agree w/someone else who left a response several articles back that said her doctor told her that chronic pain people are being experimented on by taking away their opiates. I now agree we are being experimented on. Now that I’ve had a failed surgery , the surgeon told me to take CBD oil during my recovery BC I was still hurting & after my supposedly healed time which I still hurt worse now than I did before surgery & the surgeon said how do you like the CBD oil? I said the FDA doesn’t regulate it & I’m surprised a doctor would recommend CBD oil. I said all the pharmacist could say was it works for some people. I’m getting the runaround for 2nd opinions. I suggest don’t have any surgery you have nowhere to turn & physician not going to give you anything to help w/ their failed surgery or the decency to find out what went wrong. So far it’s been like dealing w/ the physician mafia maybe I’ll have better luck w/the drug cartel for relief. The CDC, prop & gov have ruined Healthcare.

It would be simple to re-code all narcotics so the meds can be tracked back to the doctor which wrote the prescription, the pharmacywhich filled it and the patient which had it filled. Then if it ends up anywhere besides the patient the authorities will be able to punish those abusing their meds. Sounds like a common sense start for removing those that over prescribe, patients selling meds ECT.. Then we can concentrate on the drugs way out of control like, heroin, fentenal, meth ECT. Great letter!

Perfect common sense. I dont kn why all the persons, groups you mention dont have common sense. How many more will die fed up waiting for help with pain.Thank you for excellant article.!

Linda Olds

This is a good letter, but will it change anything? The CDC has said that it never meant for pain meds to be taken away from chronic pain patients, but the problem still goes on.
It’s getting worse, as ignorant people put out articles saying that opiates don’t work for chronic pain (in spite of hundreds of years of evidence to the contrary).
They “helpfully” suggest that Tylenol, Advil, or mind over matter are excellent substitutes for opiates.
It’s evil to put chronic pain patients through agony, and these suggestions add insult to injury.

Laurie Kimmey Johnson

Saw my pain Dr. today, did not skirt the issue that in the past 11 months, since he forced tapered my medicine, that my quality of life is in the shitter and that I was receiving sub par pain control after 19 years of being on the same dose, no failed drug test…compliant all the way. He never addressed what I said, just increased the muscle relaxer I have at bedtime and asked me if I was stressed out about work. I am a nurse by the way, and it infuriates me that he didn’t listen. So yes, the damn government beings that created this catastrophe need to be hung up by their toenails. I guarantee that if ANY OF THEM suffers from chronic pain, they probably get what they need when they need it. It is a damn shame CPP patients are the collateral damage to the illicit drug users. Besides, they are treated better than most of us. I just wanted to state the obvious on the fact that the “Powers that be” are mandating suffering to all that are law abiding citizens. The thought that government is in control of my health and well being is draconian to say the least.

My God, how messed up is our government. Stay out of my life and stop making it harder for me to get the medications I need to survive and have somewhat of a life.

Janice

Thank you for writing this letter. You have put it together succinctly and to the point. My thoughts exactly but in a way I could not have done. Thank you!

zaiyarose

wonderful letter, extremely impressive, however, i fear that nothing will change.
i have been shunted into a FOR-PROFIT METHADONE clinic in attempt to help myself.
it doesn’t work.

Terry

Holy [edit]! What a great blog! You summed it up absolutely perfect. Now all we have to do is get someone in the public eye to publicly advocate for us. I sent my fellow Michigander, Michael Moore, an email asking for help, no response so far. I’ll keep trying. Great job though!

Stephen

Great article, please consider submitting this letter to the editors at NYT, and Other media outlets.

Jeanette French

Wow, so right on, you have the facts, thanks for this article. I just want to also add that the CDC guide lines were put in place by politicians, none of whom were pain specialist, or doctors of any kind. How sad is that. When we make policies for anything else we always have an expert, in on the laws,even though they may be swayed by their political agenda, at least they are experts in their field, thanks !!

LMC

Its great that there is a place where insightful individuals can express themselves. I applaud every intent to create a better community for anyone who is made to suffer by decisions made by people who don’t know what its like.

I was hoping by now that rapid changes would be happening. But now I’m just doubting that anyone at the FDA, CDC or DEA can even read, much less comprehend what an hour in our lives feels like.

I would gladly invite anyone from any of these organizations to stop by my house an allow me to demonstrate what constant pain really feels like. They can even bring a loved one for me to demonstrate on so they can feel worse watching someone they love being tortured, as my husband does daily. Let them watch, helpless because of stupid guidelines that they wrote.

J.E.

This excellent letter needs to be shared with the Human Rights Action Center, Human Rights Watch, Children’s Defense Fund, Amnesty International, and other organizations!!
(United Nations, World Health Organization too!)

Thank you for stating the facts honestly and concisely!

Sue A Lewis

Call your senators and congressman!

The problem is money. The government is making money 2 ways with the fake opioid crisis–confiscating doctors’ assets and killing off the expendable populations living off of government money. Even though the jobs of the people in the agencies take all the money they make, they don’t worry with that. They protect their own with job security.

Until people realize that the government set up the false scenario to blame opioids for addiction on purpose, in order to do what they are doing, and we don’t inform the public of the REAL cause of addiction, pulling the rug out from under them in the court room, nothing will change. You can share all the numbers and facts you want. Only one thing will turn the tide.

Rosalind Rivera

Great commentary sir!
We pain patients need to have the FDA back in total and full control. Everyone, everyone else needs to back off. The DEA, HHS and other detrimental and frankly murderous agencies such as those mentioned know nothing of what life we are not living but existing in. This is hell!

Michelle

Great letter, I would like to say I spoke to the CDC and the rep that I spoke with claimed that he is not getting calls from anyone complaining about the restrictions, I was shocked . I urge us all come together for a scheduled time period of a few weeks to one month and FLOOD CALLS AND LETTERS . This would be news worthy and bring attention back to what is happening. If we use our efforts other than to just communicate to each other on these group sites that the CDC and FDA will never see.
Does that not make sense? I am just one person but I know that there is several of us.
I myself am flirting with death , stroke, and heart attack because I need an Iron transfusion and can not get another one because of the severe pain that comes with it but no doctor currently cares. I am adamant that the last 120 plus infusions caused extra pain to my joints and muscles and now with my forced taper I just cant handle it.

Thomas Wayne Kidd

Finally a right response to this madness. Thank you so much.

Kathleen

Great letter but unfortunately it is too little too late. Now that doctors medical malpractice insurance is dictating what meds a doctor can rx and how much it will never be stopped. They are not only being threatened by the DEA but by their own practice insurance with threats of increased premiums and or cancellation. The medical profession should have stood up immediately when the moronic CDC recommendations came out! After all, the problem was and is ILLEGAL DRUGS!!! Private insurance has their greedy hands in this debacle as well. Now MI and PENN are going to open ‘safe shooting sites’ so the people who CHOOSE to use a deadly, illegal drug can get help when they overdose on too much or tainted heroin. This is beyond insane! Lets deny cpp their meds that allow them to work, raise their kids and contribute to society! Lets deny our Vets who faught for our and their freedom! Lets deny the disabled thier medications just because we think they are a burdon. I cannot for the life of me understand how this got to where it is. Too many are making millions on drugs for addiction (lets get the addicts addicted to another drug, duh?) and rehab centers. All the compassion is for the illegal drug user, go figure. I guess it makes sense when you kow that the US has been making billions on this illegal heroin drug trade since we have had troops guarding the poppy fields in Afghanistan for more than 10+ years! This government, the CDC, and DEA are full of morons. Not to mention those that believe anything they hear from them. My own doctor told me I cannot have the meds that allow me to have pain control because of those that abuse drugs! I am ashamed of this country and what it is doing to the people. As usual, the rich are still getting richer and the poor poorer. And the people with chronic pain made to suffer while they cater to the addicted junkies. The ones that chose to stick that needle in their arm over and over. If I hear one more time that they have a ‘disease’ ….

Sean Martin

Bravo!

Patricia Bradley

Excellent letter..wish someone somewere had enough money and influence to stop the discrimination and abuse.

Timothy Mason

Good letter Jeff. I sent the FDA a letter yesterday morning.

Jan Fulton

We all agree this is the best most concise letter we have read EVER. But as I read it and yes, I was holding my breath too but I was also kept thinking so, I, we, are still suffering day after day, hour after hour.
The damage has been done. People die writhing in pain, commit suicide because they have no quality of life, being denied sweet relief from ER docs and nurses who gleefully say NO to giving you one shot or pill because they see themselves as the power who will save the world from ” addicts” . They get off on it.
My point being THANK YOU but it will take decades to reverse this cluster****
I’ll be gone by the time the powers that be decide to treat pain again.
Forgive me for sounding so negative. I’m just exhausted from hurting every single day and taking care of my mom who is in pain also.
Please tell me what can be done now? I don’t feel as relieved as some of you. Help me understand what happens NOW?

Veronica Clark

Very well worded letter Jeff.
However, I don’t think they care. Animals are treated better than people. So, what does that say?

June

Oh my all unfortunately true but how do we stop this insanity. At least a week before my pain Dr appt I get physically sick for fear this will be the one when he takes away my pain medicine, of which they have already tapered me from 75mcg to 25 mcg. I had been on 75 mcg of fentanyl patch for over 20 years it allowed me to have some quality of life I was able to work a few days a week & able to go places with my family, did I still have pain, yes, it controlled the pain most of the time I still had pain & had several extreme pain episodes a month but I felt alive! Now the pain more intense everyday, & back to not being able to eat what I need to to survive. But I will say I will be another statistic as the pain now is so hard to deal with everyday nut I remember how it was before I had the 75 mcg patch & I cannot go back to that I can’t endure that pain again which makes me feel weak & guilty because of all those who suffer.. But what can we do but endure until we can’t any longer. I see my husband, daughter & grandson so uptight so worried about me. Its not fair to them that my pain so impacts on their lives.
I must day thanku to Jeff Edney & all those who fight so for all of the pain patients.

Sonia Bodie

Jeff, OUTSTANDING! Now PLEASE FOR THE LOVE OF ALL THATS RIGHT AND MERCIFUL, SOMEONE LISTEN!! and act accordingly!!

I believe the FDA as a whole is not operating in our best interests, and never were. My opinion is based on nearly two decades of direct communication with the agency, mainly the directors and staff of FDA/CDER, the Center for Drug Evaluation & Research as a registered patient advocate. Although I hope & pray the agency will take note of your very well written and deserving letter, my experience with them says otherwise sadly. The agency is not neutral, they are extremely political and the agency operates daily to keep the money flowing and the markets happy. That’s their prime directive, not patient safety. I was told this directly by them, quote: “We are not the Food, Drug & People Administration Dennis! We are the Food & Drug Industry Administration. Unlike you, we have Wall Street to consider.” Nearly 52% of their yearly operating budget is from direct revenue, yes the application and licensing fees paid directly to them by huge food, drug and medical device conglomerates. Walking the halls of the agency while glancing at the name tags says it all. The FDA’s campus is embedded with hostile forces from Big Pharma to well funded physician group lobbyists all vying for their share of the pie. Sadly, we patient advocates are hard to find among the hordes of capital investors. The patient voice is not well represented there. They are entertained but eventually dismissed especially if they’re advocating something that conflicts with those with the larger name tags. If there was ever a David & Goliath allegory, there it is. I guess if we patient advocates had the same millions of lobbying dollars behind them, maybe things would be different. Until then I believe the agency should be required to actively invite patient advocates to partner with them so that the recipients (patients) of their decisions can directly voice their opinions about the regulations that impact their lives. Right now, that does not exist.