Chronic Pain Patient Writes President Obama

Chronic Pain Patient Writes President Obama

Frank Schiraldi

Frank Schiraldi

Frank Schiraldi is a 59 year old Pennsylvania pharmacist working in managed care at a PBM.  He developed pancreatitis in 2011. He since had a diagnosis of chronic pancreatitis, groove pancreatitis, avoided a Whipple Surgery, and did have Celiac Plexus nerve block. He recently learned he also has generalized Myasthenia Gravis, not yet controlled. He wrote President Obama the following letter:

Mr. President,

As a pharmacist practicing in managed care at a PBM, I am front and center of the opioid prescription crisis we face today. There is no doubt that these powerful drugs are over-prescribed and causing harm.

But – though drastic action was needed to rein this in, I’m afraid that invoking a second (or third) prohibition will have a far worse outcome, both short and long-term. Every position piece and policy directive I’ve read – as well as the many coverage pieces from major press outlets, have been entirely focused on abuse and addiction topics. At most, I’ve only seen an occasional footnote about the real chronic pain patients benefiting from these medications today. Little if nothing is said about how we are going to be able to continue their much needed care.

Based on the draft guidelines I read from the CDC, no provision is being made for long-term treatment for true chronic pain patients. In real practice, I am seeing the impact first-hand. This has turned out to be a slash campaign, where doctors are not treating in pure fear of DEA actions, and patients are getting hurt, and are worse off because of it.

If this is to follow in the overall directive of “Patient Outcomes” – we must realize that not every prescription for an opiate drug is being abused. These prescriptions are falling into two separate buckets of consumers. Those who are abusing the drugs, and those who are benefiting from chronic pain treatment. The two pathways are clear – addiction treatment, and pain management. Right now, “all the noise” and press is about cleaning up the streets. There has been ZERO communication about the safe continuation of medically valid pain management. People are people – they just don’t know what to do! Sure, we don’t want to expose any pathways to all the bad actors, but all the doctors and pharmacists are so damn scared of the DEA, they are afraid of helping the remaining patients who need it.

Perhaps the DEA is a bit over-zealous in carrying out your directive on prescription drug abuse.  I’m not a fan of draconian measures. I’m also professionally concerned when we harm the patient. The numbers being harmed are enormous, far greater than many expected.

The biggest red flag in all of this should be how little you are hearing this feedback – from patients, from doctors, nurses, or pharmacists. All scared for their own reasons.

Let’s step back, take a breath, and re-evaluate this, and quickly. Yes, people are dying. If you want to talk more, there are thousands of us ready to chat.

Sincerely,

Frank Schiraldi

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Frank Schiraldi

  Subscribe  
newest oldest
Notify of
Patti

Frank Schiraldi has certainly touched a nerve, and it’s good to see so much discussion. Diane, I watched the videos and tweeted them. It’s refreshing to see media attention given to our side of things. A little more of that and things could truly go a different way. I agree it feels like nobody cares about what happens to us, we tend to fade into the background as a group, but we’re going to just have to make them care. Change doesn’t come easy. They’ve passed a lot of these regulations in private with no public input, so we have to find a way to get our voices heard! James Sizemore, I think we’re all getting pretty angry, and I say we use it. For someone who has to struggle through the fog of pain just to function on a daily basis, sometimes it takes the extra push we get from being angry to do something more than get out of bed each day. So, let’s ged mad. One thing, though, I do feel the need to correct your numbers just a tad: you state that prescription drug overdoses kill more than firearms and motor vehicle accidents each year. Though they may try to make it seem that way by lumping prescription drug overdoses into heroin and other illegal drug overdoses, the fact is that prescription drug overdose deaths are approximately 16,000 annually. Both motor vehicle accidents and firearm deaths are about triple that – each. When you look at the number of people living in pain, that number is in the hundreds of thousands. 16,000, therefore, is a relatively small number. I’m not saying it’s ok, let it be, I’m just saying we have much bigger fish to fry. I also have to wonder how many of those prescription drug overdoses occurred in terminally ill patients, or people who are otherwise weakened and already on their way out? How many decided they couldn’t take it anymore, or didn’t want to let their disease progress to a horrible end stage, and took their own lives? Also, the CDC numbers saying there are enough pain pills prescribed each year for every single person in America to have a bottle of pills are faulty and misleading. The way they arrive at these numbers is to count every single refill – so a single chronic pain patient would comprise 12 of those prescriptions, if they take one pain medication and refill it monthly. They also count every prescription issued after a surgical or dental procedure, whether it be for 10 pills or 30. Terminally ill patients are often given multiple prescriptions, with those being refilled each month, so each of those prescriptions count as 1. And so on and so on. It’s easy to see how that statement touted by the CDC is innaccurate and most certainly geared to be misleading. As a person whose job it is to collect that data explained to me, if a family of seven siblings has one… Read more »

This is a follow up to my earlier post about the study at the Mayo Clinic. The Mayo Clinic still has an active interdisciplinary pain management program. Here is the link: http://www.mayoclinic.org/departments-centers/pain-rehabilitation/minnesota/overview/core-components

Many of you might be interested in this study from the Mayo Clinic from 2004. Insurance companies began refusing to pay for these types of programs in the late ’90s and most have since shut down. I don’t know if the Mayo Clinic still has theirs.

Chronic Noncancer Pain Rehabilitation With Opioid Withdrawal:
Comparison of Treatment Outcomes Based on Opioid Use Status at Admission
JEFFREY D. ROME, MD; CYNTHIA 0. TOWNSEND, PHD; BARBARA K. BRUCE, PHD;
CHRISTOPHER D. SLETTEN, PHD; CONNIE A. LUEDTKE, RN, MA; AND JOHN E. HODGSON, MA
• Objective: To study differences in treatment outcomes between patients with chronic noncancer pain taking vs those not taking maintenance opioids at admission to a
pain rehabilitation program.
• Patients and Methods: A nonrandomized 2-group prepost design was used to compare 356 patients admitted to the Mayo Comprehensive Pain Rehabilitation Center from January 2002 to December 2002 at admission and discharge by opioid status at admission. Measures of pain severity, interference due to pain, perceived life control, affective distress, activity level, depression, and catastrophizing (an exaggerated negative mental set ssociated with actual or anticipated pain experiences) were used to compare opioid and nonopioid groups. The patients entered a 3-week intensive outpatient multidisciplinary pain
rehabilitation program designed to improve adaptation to chronic noncancer pain. The program uses a cognitive behavioral model and incorporates opioid withdrawal.
• Results: More than one third of patients (135/356) were taking opioids daily at admission. At completion of the program, all but 3 of the 135 patients had successfully discontinued
opioid treatment. No significant pretreatment differences were found between the opioid and nonopioid group regarding demographics, pain duration, treatment completion,
or all outcome variables, including pain severity. Significant improvement was noted at discharge for all outcome variables assessed regardless of opioid status at admission.
• Conclusion: Patients with symptomatically severe and disabling pain while taking maintenance opioid therapy can experience significant improvement in physical and
emotional functioning while participating in a pain rehabilitation program that incorporates opioid withdrawal.

From the Pain Rehabilitation Center, Mayo Clinic College of Medicine,
Rochester, Minn.

Mayo Clin Proc. 2004;79:759-768 759
• Results: More than one third of patients (135/356) were
taking opioids daily at admission. At completion of the program,
all but 3 of the 135 patients had successfully discontinued
opioid treatment. No significant pretreatment differences
were found between the opioid and nonopioid group
regarding demographics, pain duration, treatment completion,
or all outcome variables, including pain severity. Significant
improvement was noted at discharge for all outcome
variables assessed regardless of opioid status at admission.
• Conclusion: Patients with symptomatically severe and
disabling pain while taking maintenance opioid therapy
can experience significant improvement in physical and
emotional functioning while participating in a pain rehabilitation
program that incorporates opioid withdrawal.
Mayo Clin Proc. 2004;79:759-768

Brenda Knight

My husband was a Lobbyist for over 20 years on The Hill. I asked him for a suggestion on how we could best get the attention of Washington concerning our tight laws on prescription drugs and how it’s affecting those of us with Chronic Pain from obtaining proper health care and the opiate prescriptions we need to live a relatively pain free life. His suggestion is to contact the Health Subcommittees on the Hilli, or in Washington, DC, (This list can be found by Googling Health Subcommittees in Washington, DC.) We first begin by getting attention by talking to Congressional staffers who will take our concerns seriously enough to then pitch our concerns to the Congressmen and then ask the Congressman to meet with 4 or 5 experts or Chronic Pain suffers who will convince the Congressman of the current wide spread problems chronic pain patients now have in getting proper health care and medications needed to treat the physical conditions. If the meeting with the Congressman goes well, then the 4 or 5 experts or people suffering from chronic pain, lastly ask the Congressman to hold a Hearing before Congress on the lack of medical care for chronic pain patients, since CDC and DEA enforcements are preventing us from getting the treatment needed, At the Congressional hearing, we make sure to send articulate speakers who can give testimony on how CDC’s new initiative and DEA’s tightening laws in prescribing opioids and pain medications is causing true lack of health care for chronic pain patients. This describes how to get something done in Washington and having a Hearing to put our health related problems in writing and get ourselves heard.

.

Hi all. I am a writer, and in the last week I am feeling called to write about about pain and the mess we’re in now. I want to allow pain patients to have their voices heard. I want to provide a historical perspective to the treatment of pain, differential between pain patients and people who just want to get high, explore the current laws and how the new proposal are threatening to take away all reasonable treatment. I will be looking for help from the community in regards gathering statistics, medical information that can be translated for the general public, stories from pain patients, doctors, nurses, pharmacists.

Would I have the support of people on this board? If you want to write me or send me information, I’ll be using the email address painbook@comcast.net for this project.

This is a leap of faith on my part, but I feel this a book that needs to be written now. Your comments and opinions are very welcome.

Joanne O’Brien

Patti

Steve P.,

Thank you. For the record, I believe your original stance is absolutely valid, and I hope one day – once we’ve achieved our current goal – we can work together to reform our current mess of a political system! I used to feel like I could change the world *sigh* but I’m so beaten down these days. I’m very encouraged by your words of support though, and I know we can get this train wreck of a War on Drugs down to a manageable level…together. I am so grateful for your offer of support and will absolutely be taking you up on it. I will be posting further on my progress in the hope that others would like to join in, even if to simply add their names to a letter.

Everyone, the Washington Legal Foundation is a very good place to start, and I see a link has been provided in several comments here, so hopefully they’ll be hearing from a lot of us and be able to use their high profile to get our voices heard.

Steve P.

Patti,

Excellent write-up! You’ve convinced me to rethink my original stance. I do not have the legal experience, but I do have experience writing peer-reviewed published works and acting as a document editor creating ISO compliant standards publications for ISO certified standards organizations, although those materials are technology related publications. I will help in any way that I can.

The Washington Legal Foundation is an alternative and is already calling for the CDC to withdraw its recent Draft Guideline for Prescribing Opioids for Chronic Pain. [http://www.wlf.org/upload/litigation/pressrelease/111715RS.pdf].

Well said Patti and sad but TRUE! I am NOT giving up this battle but I honestly don’t see us getting anywhere. Our government does NOT CARE about us. PERIOD
The investigative reporter Matt Grant is up for an EMMY for the News Stories he has done called State of Pain here in Florida. I participated and got the attention of this reporter to do these stories and HELP us chronic pain patients. Am I up for an AWARD? Has anyone HEARD ME? Hell no… nothing is changing… don’t get me wrong Matt Grant did a great job with this battle and trying to get to the bottom of the problems for us chronic pain patients BUT it is not being HEARD by anyone but the other chronic pain patients here in Florida and worldwide. It makes me SICK. If you have NOT seen the video recordings of what we have done please WATCH them here –
State of Pain Show aired on 10/17/15 at 7 pm
http://www.wesh.com/health/state-of-pain-a-wesh-2-news-special-presentation/35883094
Roundtable Discussion recorded on Monday 10/12/15 8 pm
http://www.wesh.com/health/patient-roundtable-discussing-floridas-prescription-problem/35885254

Patti

I think the biggest harm we can do to ourselves is turn this into a political battle between us. Yes, these draconian policies have come into place under the Obama administration, but I personally don’t see one candidate on either side of the isle that would do any different. Those that might be willing to help will never get far enough through the big money machine that is American politics to see the inside of the White House. Every single one of them toes the corporate line and are being told this is part of the agenda. I’ve written to and called congressmen and women from both parties and gotten the same response: “sorry you feel that way but you’re wrong.” This is a collective action on all of their parts to distract the American people from the fact that we live under a daily threat of terrorism and mass shootings and there’s nothing they can do about it. They don’t want to appear impotent so they’ve drummed up this “crisis” that, from their point of view, should be easy to manage, thereby restoring the public’s faith in them. After all, they’ve already gotten public support – citizen against citizen is remarkably easy to achieve these days – and this group, for all the reasons many of you have listed, is unable to fight back. Why else target a group of well over 100,000 that loses only 16,000 a year? More people die from pneumonia and other “natural causes.” Certainly more die from alcohol, car wrecks, tobacco and guns. We don’t have the luxury of time. There are no viable political candidates on the horizon and, even if there were, how many years until they’re in a position to effect change? A president has little relative power and we’ve all seen how dysfunctional our congress is. Any legislation to reverse the damage or limit the powers of, say, the DEA could take years! Yes, our political system needs to be fixed, and yes, we should all do what we can — but that’s not why we’re here. Our collective problem transcends political, racial, socioeconomic and all other lines. It’s something most of the population – including those so vehemently advocating against opioids right now – will face as they age or are injured. I see it as a civil rights issue; a constitutional issue, denying medical treatment, especially to someone in pain. And that, in my opinion, is how the problem we face should be framed. Leaving all other elements out of it, we should approach this as a legal/constitutional issue. That’s what I intend to do, anyway. I’m preparing a letter to the ACLU, imploring them to intervene. I would very much like it and think it would be helpful if as many of you as possible signed my letter or created ones of your own. I need more time to complete it; I’m sure you can understand how hard it is to write or otherwise function with a… Read more »

Steve P.

BL, with all due respect, yes this matter has started within the last 8 years, more precisely turning to fever pitch after 2013. Talking my physician and pain specialist these are new policies recently implemented and contradictory to 15 years ago when the political pressure was that they were not prescribing enough.

The largest group being negativity impacted by these reckless and inhumane policies is the pain community and yes, legitimate Chronic Pain patients are being kicked off of their treatment plans, without an alternative. I’d in doubt, ask the pain patients yourself, there are dozens of stories here alone. In CT the state forced the reduction of opioid prescription by nearly 50% over the last 3 years. If toy are a patient forced out of a clinic due to these procedures, no other doctor will take you. I personally know 3 pain patients this had happened too, one being a family member.

Who cares about Jeb, there will always be someone willing to help legitimate patients.

BL

Steve P, anyone that thinks this has suddenly come about in the last 8 years hasn’t been paying attention. President Obama and every other President makes decisions based on the information they are given by others who know far more about situations than the President does. The President gets blamed because he is the one that is visable, even though plans and restrictions aren’t his idea.

You can forget any support from Jeb Bush because his daughter has struggles with drug addiction and was arrested for prescription drug fraud over 10 years ago. The politicians running for Presidency have already been faced with questions about prescription drug abuse, opiates and heroin and will continue to be. So far nothing has been said about chronic pain patients and I doubt it be. Where are their voices and faces that the candiates would be forced to address the topic ?

Steve P.

Pam, It breaks my heart to know your plight. You are 100% correct and we, as a very large community very much NEED TO BAND TOGETHER. The minority is screaming from atop their soap boxes, spreading tainted views and misinformation. Petitions alone won’t be enough, marching on Washington is impractical, as many victims of Chronic Pain can barely walk or get around. Let’s not forget that demonstration in Washington is effectively illegal under our current regime, without the “right” permits, which they will not grant to opposing views. We can send a message at the voting polls! By banding together in an ACTIVE organization we can make a tremendous difference and make them listen to our voice. CIVIL RIGHTS FOR THE DISABLED! We need to find or create an organization that is actively involved in politics, as opposed to the many organizations that just provide counseling and support. While these passive organizations have a very important purpose in helping people to learn how to live with Pain, addressing public opinion and perception, and fostering further research to bring us out of the stone age of Pain management/treatment. But now is a time for action. We should begin by finding a Presidential Candidate who supports the Pain Community. Unfortunately, the Democrats in power are the ones who have started this mess and have caused this fiasco, so they will not help us. This is evident by the “drug councilors” the Obama administration sends to Pain patients who write him about the Pain Crisis. This mess was started directly by Obama himself and is being enforced by his cronies. So, we need to support someone else! The Democrats are using the opioid crises, that they manufactured, as a means to further their political ambitions. the Pain Community is the fodder and bodies to which they will use to climb to higher heights in power and arrogance. As another example, Senator Lieberman was once a champion for patient and consumer rights while serving as Attorney General of the state of CT. Now he has become one of the zealots attacking the Chronic Pain community and shares the views of the hardline Democrat party that they must protect us from ourselves, consistently using the 2 million heroine addicts as a reason why the 25 million moderate to sever victims of Chronic Pain should suffer. Myself and others have written him and Senator Murphy many times on this topic, not once have they listened nor responded, but they did send a plea to my wife in supporting them in their “fight against the opioid crisis.” As Pain patients we ask the candidates “Do you stand with the Pain Community?”, “Are you going to redact the new CDC recommendation?”, “Will you stop the forced reduction of opioid medications?”, “Will you allocate the same monies to Pain research as are assigned to other health issues?”, “Will you remove politics from the Doctor/Patient relationship and repeal the recent laws holding medical professionals civilly and criminally liable for treating… Read more »

BL

LouisVA, I believe that when you know what the reality is you are better able to face it and learn to cope. That accomplishes more than believing in things that won’t come to pass. On the other hand if some people chose to believe that the laws and guidelines are going to be rewritten in a manner than isn’t as restrictive as they have now become they will live their life wanting on that “some day.”

I still say that the vast majority of chronic pain patients are receiving adequate pain management and are able to get their meds. If that isn’t the case with someone then they need to get a copy of their medical records and carefully and objectively read them. They need to carefully examine what they expect, what they are willing to do and what is reasonable for them to expect from the medical community.

Pam Molnar

MR. SCHIRALDI, Thank you for your letter to the President, sticking up for all chronic intractable pain sufferers ! Sadly, NOONE IS LISTENING TO US! I have signed the petition2congress first do no harm page multiple times, I have written every NJ senator, Ive written the CDC, DEA, PROP, FDA, the senators that are backing the CDC up, This is pure HELL we are being FORCED to live in! I had two FAILED spinal fusions that left me with sever nerve damage down my legs into my feet. When I wasnt my surgeons walking success story, he shoved me off onto pain management. I also have three hern. discs, fibro, deg. disc disease, arthritis in my hips and spine, severe stenosis, migraines and because of the HELL I AM BEING FORCED TO LIVE IN I AM NOW DEPRESSED AND SUFFER FROM SEVERE ANXIETY ATTACKS. I was on the SAME dose for MANY years, Opiod therapy was my LAST RESORT after trying all other options MY BODY could take, not the dea, the cdc, the president, MY BODY could take,, including years of physical therapy, massage, chiro, tens, heat, epidurals, nerve blocks, disectomies, all other medications, NOTHING WORKED ! i finally resorted to opiods and I was given a QUALITY OF LIFE ! NOT ANYMORE ! My doctor who have been with for four years now, a man who was once compassionate, showed empathy, believed in me, has lowered my meds back in MARCH. for NINE MONTHS I have been living, scratch that, EXISTING in EXCRUCIATING PAIN! Two months ago i pleaded with him to put me back on the correct dose. He has been playing medication roulette with me every month, giving me shit meds that do not work, meds i have tried many years ago. I told him if he couldn’t do it for four times a day, which I should be on it every four hours if I want around the clock relief, than i would try three times a day. I knew there was no way in hell id make it on three times a day. He told me i was bargaining just to get the pills. I nearly broke down in tears. I told him do not make me feel that way when you know I am legit. he broke out the needles, carried on by injecting me, which was excruciating and the tears came down. I was literally having an anxiety attack right there in his office. I have been telling him for nine months now that my anxiety is thru the roof, but i am not allowed to have anything for it..wtf??? I left there ready to wrap my car around a tree!! I cannot help I have debilitating conditions that there is no cure for, i cannot help that the only way i get relief is thru the use of opiods. I DO NOT GET HIGH, I GET RELIEF! OUR RIGHTS AS CITIZENS OF THIS COUNTRY ARE BEING STOMPED ON BY THE DEA,… Read more »

Julie, Low Level Laser Therapy is helpful for RSD/CRPS.

LouisVA

BL said:
“Pharmacist Steve, it’s not that he doesn’t care. He will never see that letter. He has appointed people to handle a number of federal issues and he lets them do their job. I seriously doubt that anyone in a position of changing things will ever read that letter. Although I’m sure Mr. Schiraldi will receive a form letter, perhaps with the stamped signature of the President on it thanking him for sending it, etc.”

BL, I’ve noticed a pattern. Most people commenting on these stories seem to have some hope that helps them to get thru their miserable days. Why do your comments always seem so negative, BL? Are you just negative about everything? It’s a real bring down.

Julie Day

Hi my names Julie l have had R.S.D for 13 years in my feet and lower limbs .
I am not addicted to pain meds mine is far deeper l am dependant on them l take morphine been on it for 5 years after a while it does not work so well know so l need to change to something eles anyone got any ideas please.

I absolutely agree with everyone who has been posting on this website that doctors who are practicing according to standards of care in treating chronic pain patients should not have to live in such fear of losing their licenses or being criminally prosecuted that they feel they need to abruptly cut off medication to legitimate chronic pain patients who depend on opioids to manage their pain. It is heartbreaking to read about the experience of many of you who have suffered so much because of this. No one should ever be abruptly withdrawn from opioids. I write about the issue of criminalization of doctors in my book, The Truth About Chronic Pain Treatments. I believe it is an attempt to scapegoat doctors instead of placing blame on the inappropriate use of opioids where it really belongs–with pharmaceutical companies who convinced doctors that it was completely safe to prescribe opioids as a first line treatment for every little ache and pain that comes along and with a medical system that is so controlled by the pharmaceutical companies that doctors receive virtually no education in treating chronic pain and insurance companies refuse to reimburse for most other treatments. For those of you who are on this website who are suffering from this catastrophic situation, I would like to offer free pdf copies of my book, The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free. I believe you will find information in it that will help you manage your pain. Just email me at cindyperlin@gmail.com and I will send you a copy.

BL

Pharmacist Steve, it’s not that he doesn’t care. He will never see that letter. He has appointed people to handle a number of federal issues and he lets them do their job. I seriously doubt that anyone in a position of changing things will ever read that letter. Although I’m sure Mr. Schiraldi will receive a form letter, perhaps with the stamped signature of the President on it thanking him for sending it, etc.

Sheryl Donnell

As a chronic pain patient for over 13 years who is not addicted to my opiate medication, I must insist that these new policies are doing far more harm than good. I have contact with 100’s of of others with my illness. Many I’ve known for 13 years. I’ve never seen as many suicides as I have in the last year. These were all people who lost their pain medication or had their doses greatly reduced by doctors following the new guidelines. It had NOTHING to do with their health, pain levels, or individual needs. My friends live in fear of their regular doctor’s visits. Literally. They are all terrified their pain management or Internist will reduce or stop their medication for no medical reason, because it happens all the time. These patients then are stuck. They get sicker. They have all tried every other kind of treatment before opioids. They are doing all of the complementary treatment at the same time. It’s just that some pain is just so intense even when you throw everything you have at it, you barely get by. Taking away a huge part of that puts us back into our beds, writhing in pain, with even less of a life than we had before.
We need someone to hear us. We aren’t well enough to March on Washington. We need others to help us. Please.

It is great that the letter was sent to Obama, unfortunately, IMO.. he doesn’t care.. it may be just a coincidence that the war on drugs was accelerated just after Obama’s administration and AG Holder came to power, but it may also be by design.
Those who abuse substances and the chronic pain community have more in common than they are different.
Both groups are suffering from a subjective chronic disease that is being un-diagnosed and/or untreated…
Those that abuse substances are suffering from the mental health disease of an addictive personality
Those with chronic pain are dealing with a pain that cannot be measured by some blood/lab test.
The common denominator is that both groups tend to use opiates and benzos to treat their chronic conditions
Our judicial system and bureaucrats are increasingly focus on the common denominator and changing the nomenclature that there is no longer addiction and dependency but now everyone is being diagnosed with “opiate use disorder”.

Collectively, we need to defend those who have addictive personalities deserve proper treatment for their chronic disease and that being a addict is not a crime in and of itself.

And the test to diagnose this new disease is very simple.. you take away their controlled medications and if they go into withdrawal… they are suffering from a “opiate use disorder”
Obama is a lame duck with one yr + left to establish his legacy and given the actions of the DOJ/DEA/CDC over the last 7 yrs.. IMO.. this administration’s agenda will not/cannot be changed at this point.
There is a estimated 106 million chronic painers. The last Presidential election there was only 126 million total votes cast and 5 million votes between the winner and loser. There is 435 from the House and 33-34 Senators up for re-election.
Just listen to politicians.. they seem to believe that the more money they raise for the reelection campaign will basically buy votes.
The whole war on drugs started with Congress in 1914 and in 1917 out judicial system determined that being a opiate addict was a crime in and by itself – and was not a chronic disease.
IMO.. change is only going to happen at the ballot box and/or the court system.
The 535 elected official in the House and Senate – have they done anything to change the path of the war on drugs and how it impacts your life.. Why send them back to Congress when you vote next Nov ?
You can register by mail.. you can vote by mail.. your only excuse for not voting is not being able to get to your mailbox.
They are changing your quality of life… should you share your “pain” with them.. ? Let them think that $$ buys votes.. a covert massive “vote the bums out” will speak volumes, when all the dust settles after the election.

Sierra

If you want a place to start, please write to the Washington Legal Foundation, as they have now charged the CDC with violating federal law. You can read about this and find the link to the actual charges here: http://nationalpainreport.com/legal-group-to-cdc-start-over-8828295.html. I think we will get much further by going through legal channels, and Washington Legal Foundation is finally a place that is willing to take on such a battle. To discuss options and organize, I would recommend this group on Facebook: https://www.facebook.com/givepainavoice/?fref=ts or this group which is working to be active and not passive in fighting for our right to pain relief: https://www.facebook.com/groups/Lostinchronicpain/?fref=ts. I think we are past fear of speaking out and are ready to group together, but many of us have not known how or where to do so. We now just need to organize and find each other so we can all work together. By ourselves, this fight seems monumental, but together…we are a HUGE group. We have the ability to make change – if we are willing to push through our pain to take on this fight! Let’s organize and do this together.

Anyone here, please feel free to email me. I am a chronic pain patient and advocate. You can read my other post here and watch the videos of the interviews and TV Special I did with the local news here in Florida. I am NOT giving up this fight for patients rights! I have suffered with chronic pain since I was 5 years old, I am now 51. I have Charcot Marie Tooth disease, scoliosis, many herniated discs in my neck and back, chronic peripheral neuropathy from the Charcot Marie Tooth disease, arthritis, and fibrous dysplasia of the temporal bone. I had both of my feet totally reconstructed at age 32 because the CMT disease deformed my feet so bad it put me in a wheelchair. Thanks to an amazing surgeon I am walking again BUT I am NOT pain free and never ever will be. Opiate medication just takes the edge off and allows me to semi-function on a daily basis. And just like all of you, I am NOT an addict, I need pain medication just to function daily, just to be able to get out of bed, etc… ANYWAY I am WITH YOU ALL in this FIGHT for PATIENTS RIGHTS. My email is – dianegracely@comcast.net AND you can find me on Facebook here – http://www.facebook.com/dianegracely

Steve P.

Cindy, With all due respect, people are suffering and dying due to egregious public policies implemented to address a “drug abuse” problem that is far less severe than the epidemic of Chronic Pain. A purported 100 million Americans suffer from Chronic Pain, 25 million of which suffer from daily moderate to sever Chronic Pain, robbing them of their lives and is estimated to cost society between $560 to $635 billion dollars annually. This epidemic of Chronic Pain effects more people than cancer, diabetes, heart disease (heart attack, chest pain and stroke) and “drug addiction” COMBINED. Here are just 2 sources of said information [http://www.painmed.org/patientcenter/facts_on_pain.aspx][http://www.drugwarfacts.org/cms/Drug_Usage]. Opioid pain medications, when taken properly and prescribe in adequate amounts to properly manage a patient’s pain, not only relieve that patient from their suffering, but also allow them to live productive lives, maintain jobs and take care of their families. The same cannot be said about medical marijuana, as it impedes the patient’s ability to reason and patients do not tend to acclimate to marijuana as they do to opioids. While the information and statistics you cite are mostly correct they don’t reflect the morbid reality behind these mortalities. An unknown percentage of the deaths you cite are due to suicide, not accidental overdose, and NO ONE has researched how large of a percentage of these deaths are suicides committed by chronic pain victims seeking to end their suffering. The same applies to chronic pain victims who have turned to illicit street drugs; they did not do so out of preference or cost, they did so due to forced opioid reduction and insufficient pain management in lieu of committing suicide. It is well established that victims of chronic pain are at least 3x times more likely to commit suicide than the general populace, however the true extent of this number is unknown, as it has not been properly studied. It has also been established that victims of chronic pain who do give up the fight and give into suicide prefer to overdose on opioid pain medications, as it is a more humane and significantly less “messy” option than other methods of suicide. Given this information that is just now coming to light due to the vast number of mortalities, it can be postulated that a significant percentage of these “overdose deaths” are in fact suicides and not accidental overdoses or side effects of a dangerous drug. But as of yet, NO ONE has researched these mortalities to determine the true extent of the morbidity of force opioid reduction and the ill-conceived measures implemented by the State to address a relatively small problem when compared to the epidemic of Chronic Pain. In addition, NO ONE has researched the number of people who have turned to illicit street drugs and self medication, including marijuana, because of forced opioid reduction. So the numbers cited in the statistics you cite are very questionable, as not only do they ignore these factors, but they also include the general category of… Read more »

John Vineyard

James Size more and Andrea Lambert, you both sound as angry and upset as I am. Personally I would rather die than use meth and will not consider it. We really all need to get together and make a serious stand for our rights. You can see my comment below, I was the first one to reply to Franks letter. I am an ambassador and trying to become an advocate for US Pain Foundation. I do not have experience in fighting the government but we absolutely must get together and fight this opioid mess. I pray that National Pain Report, US Pain foundation and any/ all chronic pain patients will stand with me against this problem, it’s time we got together and used our voices to tell our stories and let the world know we are not addicts and will not accept that discriminatory label. I am going to start a website if I can where all of us can get together and work together to do something about this. Thank you for hearing me. My email address is jjvineyard08@yahoo.com and I don’t mind throwing it out there. Get ahold of me if you support this cause.

Andrea Lambert

Cindy Perlin,

I respectfully disagree with your comment. They are 2 distinct populations. Pain patients are not addicts and if they turn to heroin it is due to the fact that they are in excruciating pain and can no longer obtain their legal opiods medications. I have been a chronic pain patient for over 20 years and I and not addicted to my opiods. They allow me some resemblance of a life and they do help take the edge off of the pain. I have tried every alternative treatments, including 4 spine surgeries and none have been effective in any way. I am not addicted to my pain meds, I am dependent on them to have quality of life. I don’t get a “high” from them and a vast majority of pain patients don’t either. It is that thinking that is causing harm to legitimate pain patients. If someone has a tendency towards addiction, they can become addicted to anything and it is the responsibility of that patient and their Dr to use non-opiod medications. Lumping is all into the addiction pile only causes more harm to those of use that take them responsibly.

James Sizemore

As a Pastor of a church that engages in harm reduction as a response to the opiate/heroin crisis, and also a 6-year chronic pain management patient, this issue is of great concern from a multitude of angles. From a harm reduction standpoint, increasing prescription opiate regulation and reporting mechanisms does not solve or even begin to address an issue that has grown to critical mass over the past 15 years. Since the establishment of a voluntary opiate reporting system and stronger regulatory mechanisms in our state two years ago, we have noticed two significant trends: 1.) A significant spike in heroin use and the complementary overdose deaths as a result of being denied prescription opiates due to current state regulations and reporting mechanisms. This is true for both opiate addicted seekers and diagnosed pain management patients. 2.) Primary care provider and/or physician reluctance, and in some cases outright refusal, to prescribe opiate based pain therapy to established long-term chronic pain patients in response to increased reporting and regulation that has, according to multiple physicians, “increased risk of liability” to such a degree that it is no longer “worth prescribing at all”. Again, our state reporting mechanism is voluntary, and not required as of yet. Yet, the correlation between increased heroin use and overdose deaths and physician refusal to prescribe, is quite evident from a qualitative and quantitative standpoints. If you couple the shift from prescription based opiates to heroin/non-prescribed opiate use due to increased regulation and reporting with the larger issue of the severe lack of affordable, local, and effective drug treatment programs – the “opiate issue” in our country has now become the “perfect storm” of social destruction. Instituting Federal regulation and required reporting mechanisms at this stage of the game will only widen the path of this destructive storm. Those regulations should have occurred a decade ago when the first pill mill clinics were being shut down. Instead, these regulations are attempting to fix a complicated issue of addiction that has cemented itself in our culture for a generation. In other words, they are not going to work, are unnecessary, burden physicians and chronic pain patients, and do not address the larger issue of effective drug treatment for a large group of people that have moved to heroin in response. From a chronic pain perspective, I have never been so frustrated with my healthcare as I have been in the past year. The persistent drug testing at each appointment, the random drug testing (Yes, I have received phone calls informing me that I have 24 hours to complete a drug test or risk losing my access to the medications I need), the pill counts at each appointment and at each random drug test, the refusal to change or increase my medication in response to seasonal (winter) pain, being forced to sign opiate prescription agreements which limit my pharmacy choice to only the one that is specified in the agreement (never mind if they do not have my medicine… Read more »

inpain

Cindy Miller, YES the Government does hold just check out US Patent 6630507 titled “Cannabinoids as antioxidants and neuroprotectants” which is assigned to The United States of America, as represented by the Department of Health and Human Services.
The patent claims that –

“Cannabinoids have been found to have antioxidant properties, unrelated to NMDA receptor antagonism. This new found property makes cannabinoids useful in the treatment and prophylaxis of wide variety of oxidation associated diseases, such as ischemic, age-related, inflammatory and autoimmune diseases.The cannabinoids are found to have particular application as neuroprotectants, for example in limiting neurological damage following ischemic insults, such as stroke and trauma, or in the treatment of neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease and HIV dementia.”

The patent was obtained in October of 2003.
https://patients4medicalmarijuana.wordpress.com/medical-use-of-cannabis-video/the-government-holds-a-patent-for-medical-marijuana/

Kristi

Thank you Frank for contacting our President. I have emailed his office several times concerning different topics and I have always received a great response when nobody was helping me in my own city. I was having issues with my Social Security checks and my home office was of no help and so I emailed everyone, including President Obama. His office was the only one that helped me and sent me a letter with directions on what I needed to do.

And this is not an Obamacare issue. It’s not even an insurance issue. This is about the way the chronic pain community are being attacked by the CDC, FDA and other non-opioid organizations. I have sent plenty of emails in regards to this topic because as a disabled RN, I’m a huge advocate. I was misdiagnosed for almost 14 years and on dangerous medications and if it wasn’t for me doing my own research, I would probably still be taking those medications. EVERYONE needs to be their own advocate. So send those emails to your Mayors, Governors, Senators, CDC, FDA and our President! Nothing will be achieved if we don’t speak up!

Sara Batchelder

(SORRY – I hit “post” on my phone too early). …ingenuitive people on the planet. We can fight this. We HAVE to fight it. Most of us have our lives on the line. Let me know if you’re in!

Sara Batchelder

Thanks to Frank & National Pain for their coverage of this issue, which in my opinion, is more of a crisis than the “opioid crisis” itself. WE have to band together NOW. Period. I honestly thought the pendulum would swing back a bit after a year of this nonsense. It is getting much, much, much worse. I write the President and guess what? The next thing I know is that I got a phone call from a suicide prevention hotline making sure I was ok. Really? The gov’t (and public) now think we are lowely, uneducated, disabled complainers who just want our opioids to stay in our blissful addicted state. They couldn’t be more wrong. Pain patients are the hardiest, smartest, most

Your letter makes it sound like pain patients who take opioids and those addicted to painkillers are two distinct populations and they are not. More than half of those who are dying of overdoses are pain patients. The vast majority of new heroin addicts are people who started off with legitimate prescriptions for painkillers. Pain patients are being lied to about the addictive potential of opiate painkillers and about how effective they are. The pharmaceutical companies lied about the potential for addiction, were criminally fined for their lies and are still making billions of dollars on these drugs. In the meantime, marijuana is a much safer and more effective painkiller. It is not addictive and it helps patients wean off of opiates and prevents development of tolerance in patients who are using opioids. No one has ever died of a marijuana overdose. Yet the federal government lists it as a schedule I drug–an addictive drug with no medical benefits. The DEA was raiding marijuana dispensaries and shutting them down even in states with legal medical marijuana until this year. Most states that have legalized medical marijuana have done so with severe restrictions on who can prescribe it and for what limited conditions. Why? Because marijuana is not able to be patented, patients can grow their own, so it threatens the profits of the pharmaceutical companies, who pull all the strings on politicians. Most pain patients on opioids continue to be in a great deal of pain because opioids are not really that effective and they don’t get to the root of the problem. For more about these issues, see http://www.thetruthaboutchronicpaintreatments.com.

Mary

I am a chronic pain suffer for 10 years now and am 41. In my opinion, this crackdown on opioids, especially in my state has nearly cost my life. In the bottom of my endless despair of living this way and doctors being soooo afraid to write a script has wound me in the ICU waking up from a suicide attempt…..Guess what – I dont want to die, I just want to have SOME sort of life or a quality of life! Im sooo over my physical & emotional PAIN ….AND OBAMA – I feel completely let down. Oh, why dont I have OBAMACARE? Because YOU Mr. President want me to pay $320 a month and a $4,000 premium. Hum gee – cant work, been denied disability cause of my age (let’s cut to the chase), and cant even wipe my own ass at times, so where does this leave me? Signed, ANOTHER DISGUSTED AMERICAN

Veronica Clark

For the very first time ever, my doctor told me she would no longer prescribe my pain med a few weeks ago, due to the government ‘stepping in’. Their clinic has taken the approach that they just will not deal with the hassle. Now, I’m to go to yet another pain clinic. I told my doc that I’ve been to several pain clinics, therapy, you name it, I’ve been there and done it. It’s the money. The last pain clinic put us in debt about $20,000, and that is something I absolutely REFUSE to ever to again, considering that our wonderful government pays me barely $12,000 a year for being disabled, which they based not on my wages, but on the 2 years that I couldn’t work after being fired for the first time in my life because of my health issues, so made no money at all. The last pain clinic wanted me on Meth. I refused. End of that one. I do not get ‘hooked’ on any pain meds like most people. I don’t get ‘high’, nothing. I get a slight edge off of the severe pain I am in every single day. Without the medication, it is hell. I know, because the pain clinic insisted I go off of oxy cold turkey (which no person is supposed to do), but it didn’t bother me, except for the amount of pain I was in. I couldn’t function. I didn’t sleep due to the severe pain. Now, thanks to the President – I am back at square one. I’m beginning to wonder if these people died because of the meds, or because of their severe pain…..???

Wendy

I join in thanking Frank for his well reasoned and written letter to POTUS. I am also interested in hearing of any response you receive.
As the story of opiates as only bad drugs that cause addiction has been put out there for several years now, it is surely time for those of us who are able to speak up. But as Frank pointed out, many are afraid, for many reasons, and rightly so given the current climate. Yet speak up is what we must do.
Thank you and may your letter be the first of many! (I can hope, right?)

Susan

I’m with you John. We need to all get together and fight this insanity.
How can they let us all suffer?
This will result in human misery on a massive scale.
I will do anything I can to help get our very important voices heard.

Victor R

My medical history sounds like a clone of yours except I started at age 11 and have had a lot more surgeries. I agree with the need to treat people with chronically painful conditions with appropriate narcotics. Doctors should be able to answer the question: Just because my patient’s Rx has run out, does it mean my patient’s disease and its pain has stopped.

I have one suggestion that help bring back my life: Bilateral Thoracoscopic Splanchnicectomy – Surgery for Pancreatic Pain Control – Resection of greater splanchnic nerve left and right side. David Sanderfer/Harlan Stone, Good Samaritan Hospital, Phoenix, AZ

I am also involved with this fight for patients rights to proper pain management. I was interviewed by WESH 2 NEWS here in Florida. We have been working HARD to bring to light the issues many are having with pain management due to the DEA. See the replay videos of my interview and ONE 30 Minute SPECIAL that aired here in Florida thanks to our local investigative reporter who has been helping us battle the DEA and the problems chronic pain patients are having with getting their medications.
State of Pain Show aired on 10/17/15 at 7 pm
http://www.wesh.com/health/state-of-pain-a-wesh-2-news-special-presentation/35883094
Roundtable Discussion recorded on Monday 10/12/15 8 pm
http://www.wesh.com/health/patient-roundtable-discussing-floridas-prescription-problem/35885254

myst7

this is a great article thank You for writing the President
I sent PROP a email they need to be flooded with stories from pain patients

alls they are going to do is feed the growing herion epidemic they blame on opioids by taking away legit meds from people who suffer unrelenting pain

the advice of talking to someone to rid self of pain is a fairytale an Addiction Counsler ,they are IDIOTS if they wore my shoes for a couple weeks they would be begging for relief

Lillian Trevino

Thank you very much for speaking out i too suffer with chronic pancreatitis pain and so is about 10,000 other people in our group’s we have a petition going around to be signed so we can get the DEA to stop this on people who take there medicine the right way PROP don’t understand we need them to get out of bed eveyday to be able to eat or drink something to have quality of life and be able to be with our families our children and work to support our families so yes we all need to Rise up and protest go STAND in front of the DEA CDC AND FDA OFFICE and protest so they know that chronic pain has a voice this is our bodys and they are not in our shoes or else they would be quite about all of this so with all of this being said Thank you very much

Barbara

Thank you Frank for writing the POTUS- now we need quite a few MILLION more to SPEAK UP ! Thanks NPR for your continuous tireless advocacy posting these articles.

Steven Palmer

Retired disabled veteran with necrotizing pancreatitis, spinal disease, and much, much more. I am encouraged that anyone pays attention to our suffering. The ‘authorities’ are so wrong the way they throw in sick people with people that abuse… they cause more harm in their clueless ways of making us even more miserable in our great, great suffering. Pain clinics are foisted on us, and are worthless to people in agony. The VA causes as much damage as any other group in the way we are treated as dug seekers, until the disease has progressed to where the damage is so great, surgery is no longer an option, yet they continue to fight against us! Health organizations are also clueless in those in great pain and first treat us as drug seekers, wasting valuable time, the window of help closes leaving us to counting our last days, because we are past the time when we can be saved or helped. We can only hope to get by, the fight is long gone as we wither away. No chance of helping to raise children or be part of the family as we lay in bed sick, or in the bathroom. if we ask for pain relief, we often are ignored or delayed and often go through days of withdrawals waiting for some pain med script, as the DEA is sent to punish anyone in pain begging for help. Would anyone have a normal mind left after years of this abuse? Drives sick people insane while they cry in agony all of the time. Meanwhile, the Government enjoys their bounty of food and parties, They will repeat the abuse the coming years. What will it take for the ‘authorities’ to get a clue, have empathy, and stop the war on pain patients?

Patti

Thank you, Frank, for sharing this very well written and thoughtful letter to the president. Please be sure to let us know what response, if any, you get.

I too wrote a letter addressing the very same concerns. In response to my letter, I got a phone call from a counselor at an addiction recovery center. That right there told me this administration is making no distinction between addicts and chronic pain patients. I am hopeful, since you are a professional dealing with the aftermath of these policies, your position will be considered.

I visit many pain/SCD forums and have written a couple of articles on this issue. I’m so disturbed by the number of people who write and say they are contemplating suicide. Their desperation is palpable and the echoes of their pleas stay with me. This is all a bridge too far.

David Crawford

Being from Florida our fight started there in like 2010 so I hope to God that those of you that manage these nationally known pain foundations , Know this problem is real and people are dying daily not from wanting to take a carnival ride on medications but people who rely on them just to keep the basic human functions I just want to thank Frank Schiraldi and pharmacist Steve Ariens that are helping bring this horrible situation to the light of day .

D Parker

I have read where patients have contacted President Obama about this very same topic. The White Houses Response was to have an Addiction Counsler call the number they provided.
Every chronic pain patients needs to know that there is an agenda mostly directed by PROP that aim is to restrict opioid pain medication to all chronic pain patients. If you don’t beleave me read it for your self in the NEJM
http://www.nejm.org/doi/full/10.1056/NEJMp1507136#.Vlyw6zvVhRE.facebook

Steve P.

Thank you Frank, for your courage, for your insight, for your common sense and for your intellectual analysis of this crisis, so negativity impacting the victims of Chronic Pain.

Myself and, certainly, the pain community applaud you for the courage you demonstrate in authoring this letter. You are a hero! Most people don’t understand the great personal risk you faced by medical professionals and Chronic Pain patients who author letters such as these. Just as they don’t understand the strength required of Chronic Pain victims to perform basic, but essential tasks, such as bathing and taking care of their children.

May God bless you and your family!

John Vineyard

Please we all need to get together and do something about this. I have been making comments here on National Pain Report for a few weeks about this subject. Frank Schiraldi is absolutely on point with this letter, only the President will not listen to him or me by ourselves. Some large organization like National Pain Report, US Pain Foundation or anyone needs to head up a serious campaign against the DEA, FDA, CDC who are making their own guidelines now. I have a petition to the CDC that isn’t gaining a lot of steam, I just want to do something about this before too many chronic pain patients end up losing the battle and giving up. This is an extremely serious problem for us, I have been taken off narcotic pain meds completely as have many others. I am here and ready to help any or all organizations that want to do something about this and I will not give up.