Just who is calling the shots?????????

In my day to day pursuit of fairness in being treated for chronic pain, I am constantly coming across little tid bits that just yank my chains. If it's not following the terms of a pain contract to the letter of the law, it's changing rules that seem to benefit everyone except the pain patient. I came across a couple of interesting articles that will make a true pain patients blood boil.
The first out of my local paper, is a congratulatory article regarding Medicaid patients in my state. Evidently the DEA has successfully reduced the number of narcotic pain prescriptions, to a level so low that the number of overdoses is actually starting to go down. They claim that by reducing the dosages and out and out refusing to prescribe these menacing drugs, to medicaid recipients, is a clear victory in the war on drugs.
In the whole article, I think the only mention of legitimate pain patients was offering them smaller doses, chiropractic services, physical therapy or, I love this one, "pain acceptance therapy". Yes folks, all we really need to do is accept our pain and we will be back to work in no time. I apologize if I'm making fun of a new breakthrough therapy, if anyone is familiar with it please let me know.
The second article is out of a popular news letter, regarding a new pain medication. I believe its called Zohydro, It is supposedly a much higher level of hydrcodone. It's not so much the medicine I find intriguing, it's the reception it's receiving from those who know best. heads of individual drug enforcement agencies, and state Attorney Generals out there. Yes the drug has just been approved for use, and everyone is screaming bloody murder. Again these demands to not use this new drug, and requests to hold up the release of this new drug, is coming from our all knowing, drug enforcement agency. The all time guru's of pain management. The drug has barely been on the market and they want to stop it.
This has to stop. There has to be a line drawn in the sand, on one side, drug addicts and users, on the other legitimate pain patients. I am getting so sick and tired of having to plan exactly what I'm going to say when I need to increase my dosage on one of my pain meds. It never used to be that way. It severely diminishes the doctor patient relationship. I have this friend who for whatever reason, is on "Parole", yes he got caught doing something illegal and is paying the price. We were talking a while back about what it's like to be on parole. Never having gone though it myself I was curious what it was like. When we were done talking, I realized I had a lot more restrictions and screening responsibilities and such things as random pill counts and such on my pain contract, than he had, hell all he had to do was check in with his PA once a week. I must have missed something, when did becoming ill start to be more restrictive than being a convicted felon? I mean who is calling the shots here??????????????????????

I think this is part of a cycle. 30 years ago you had to have cancer to be treated with meds stronger than motrin. 30 years ago my dear grandmother was dying of a horribly painful blood disease. In the hospital, they would not give her anything more than the equivalent of motrin simply because she did not have cancer. Forget the fact that she was in EXCRUCIATING pain. She didn't have cancer, so she suffered needlessly. It's been 30 years since she passed, but I'm still furious at how they treated her. Thankfully a nurse took it upon herself to push for a morphine drip for my beloved grandmother. By then she was in agony. But this heroic nurse saw how my grandmother was suffering and stood up for her when no one else would (or could).

I hope we are not going back to that extreme, but it is getting a bit concerning. Ok this is the end of my rant...

Hi 1 Day! I just wanted to say that I am so sorry that your beloved grandmother was made to suffer that way - that was unnecessary and downright cruel. And what bothers me about the cancer diagnosis/pain medication availability (because it actually is an issue today) is exactly what you said. Yes, many types of cancer and/or treatments are very painful, especially in the later stages - but not all are. There are many other diseases/conditions that are excruciatingly painful (sickle cell, chronic pancreatitis, liver disease, ARD, endo, etc. - this is just a tiny list). I don't need to read it in a journal or some article - I have seen first-hand, more than a few times, how as soon as a diagnosis of 'cancer' is given, the prescription pad flies open. Again, please no one take me wrong - many times it is deservedly so - but it should not be an automatic assumption.

I can give an example of the bias I'm talking about. At Walgreens, when you drop off a prescription for a CII, the pharmacist has an 11-point checklist that he/she has to go through. And then you also have to wait 24 hours before you can pick up your prescription. However, there is a side-note for the pharmacist that states if the customer's diagnosis is cancer, many of the requirements can be waived, including the 24-hour wait. I feel that is blatantly unfair. I had a shattered collar bone and fractured tailbone (and other injuries) from my recent car accident. In the ambulance, they had to administer 200mcgs of Fentanyl before they could even leave the scene - I was in agony! I was only in the emergency room for a couple of hours (good ol' Medicaid) and then was released. I can't even begin to put into words the pain I was in. The accident occurred on my 'regular' refill day, so I didn't have any meds at home. Walgreens would not let me pick up my prescription until the next day. But if I had been released from the hospital with a cancer diagnosis, I would have gotten them that night. I'm sorry, but that is just not right.

I for one, am sick and tired of paying the price for other peoples' issues. Why don't they put all of the money that they are using for the 'war on pain medications' into affordable detox/rehabilitation centers instead? Addiction is a disease and they need to start treating it as such - and allow non-addicts to get the help that THEY need!

Darn...there I went again....sorry!

I can add to the list of end of life situations resulting in agonizing pain. My best friend died in 2001, she went through many phases of deterioration. Her doctors told us at the time that due to muscle loss the pain was indescribable, my friend was fortunate in that her doctor knew the conditions she would be going through and prepared her for them. She died of Cystic Fibrosis, a life long terminal disease. I still feel kind of creepy saying this but I really think, as did my friend, that having the time to discuss the events ahead of time was definitely a plus. It was like she prepared herself for what was coming.
As for the Zohyro article, I'll try and find the news letter again, it was pointed out that it was the fear of abuse, the lack of anti tamper features with the medication. The article I saw didn't mention Gov. Patrick of Massachusetts, but that doesn't surprise me.
In ten years of trying I have not been able to bring my pain level down to a 3 or 4, out of 10. So I am always looking and hoping for new medications. I'm not against the war on drugs, I have never in my life used recreational drugs. I was a long haul trucker for 27 years before I got sick, I had to submit to hundreds of random drug screens during my career. I think what I am starting to let bother me is the continued encroachment by politicians and law enforcement agencies on my medical treatment. I guess it's like being caught in a cross fire, we are unintended victims. I also feel for my doctors. My current PCP, has unfortunately reached her limit as far as what she can do in treating my pain. This is in part due to a new policy instituted by the medical center. I've been using this facility for 15 years. I feel bad for the position these anti abuse rules put these doctors in.
Last week I wrote of having to start a new pain contract with my doctor. Unfortunately for me, the level of oxycodone we settled on wasn't the level I needed, it was the upper most limit the facility was allowed to dispense. So on Tuesday I start with a pain specialist for my pain treatments. This will double the amount of trips into town I will have to make. I can deal with it, but I fear for others who may not be that fortunate. All in the name of safety. Why is it I don't feel all that safe??????????

Welcome back Electrify!

I was not going to post about this since I cannot link it but I wanted to share it here because I thought it was a bad thing and could lead to even more folks being turned away from Drs without help.

As a retired nurse I still get all Medscape articles from the licensed standpoint and earlier in the week I got an email for a CEU course from them on Risk Evaluating Training provided by Medscape on the use of LA/SA opiates in chronic pain. I thought great maybe this will be a positive step and finally nurses will be better trained to evaluate pain patients right? Oh so Wrong!!

I entered the CEU test area even though I nolonger need them because I wanted to see this training in its entiriety and couldnt believe what I was reading.

Apparently the FDA has highly suggested that Drs use a risk evaluation criteria on pts on or considering to be started on LA/SA narcotics for the management of pain and these meds should be used with extreme caution to prevent overdose,diversion,and abuse in patients who meet certain criteria.

The criteria training checklist is what set my blood boiling. Here are some of the risk factors that should exclude opiate therapy.

Patients with a history of mental illness?
Patients with a personal or family history of addiction,alcoholism,criminal problems,juvenile problems related to frequent encounters with the law. A history of child abuse and child molestation. Household risks or living conditions that could contribute to the diversion of the patients meds and the risk to children accidentally overdosing.

Is it me or is this saying if my Brothers an addict I should be considered a risk? If I had the misfortune of being molested as a child oh 50 years ago,no meds for me? That being a Mom to small children I may not have the common sense to keep these meds out of my babies hands? That if I suffer anxiety,depression,ptsd,etc Im not in need of pain relief?? Anyone with a juvie record cant possibly have grown up and became a responsible adult? If I live in a poor underclass low income housing developement I cant have meds Im at risk for diverting?

With the FDA suggesting patients be rated for safety using these kinds of criteria by Drs and Nurses many thousands of people will suffer simply because of the house they live in and whether they have kids in it. This is one of the most archaic things I have ever seen...

What are they thinking and who exactly is coming up with this garbage??

Im in agreement with Jim here its political in nature and if the politici
ans are the voice of the people maybe its time the people get a voice.

Vickie, excellent post. It does make you wonder just where are these ideas coming from. I'm pretty sure, as a retired nurse, you can probably rule out the medical community as a source, From the discussions I have with my doctors and with the nurses as well, I get the feeling that they feel just as restricted as we the patients. One time when I requested the use of Medical Marijuana, ( I like to give everyone a jolt on slow days) my doctor was surprisingly open to the idea. However due to the funding policies, that request would be impossible. (Federally funded practice).
As far as I can tell, chronic pain, seems to be the only affliction that generates such draconian restrictions. What about other medications. The worst experience I ever had with withdrawal, wasn't the result of addiction it was the result of a doctor not using the correct schedule for weening me off "clonazapam", he was only off by a month and a half. I thought I was going to die. My new doctor said I very easily could have. Yet I never hear about any drastic measures in the prescribing ob benzodiasapines. Possibly because not many people generally have heard of this class of meds.
I'm afraid that until the politicians and the law enforcement community can start working together with the medical community we will stay in this quagmire. Evidently it's more important to incarcerate the individual than treat their pain. As long as the law enforcement community needs to make huge waves to justify their continued war on drugs, and the politicians have to keep grabbing those votes, we are here stuck in the middle.
Thank heavens we have places like healingwell.com to vent our frustrations and swap information. As I've learned in the past couple of weeks, this forum is one of the best medicines of all....................

It is NOT just pain meds

http://www.kentucky.com/2012/09/27/2352733/drug-tests-required-by-new-law.html

".. To curb prescription drug abuse, Kentucky started in July requiring people with

long-term prescriptions for controlled substances

to submit to urine testing. The tests determine if patients take their drugs, rather than sell them, and if other, unprescribed drugs are in their systems.

In Lexington, retired nurse Cynthia Burton grudgingly followed the rules Aug. 14 by urinating into a plastic cup so she could get a refill of her insomnia medicine. Her husband did the same for his anxiety medicine.

Last week, Burton's insurance company, Bluegrass Family Health, sent her a letter. The urine tests at LabCorp cost $533 each, and because they were not medically necessary, the insurer said, it won't pay for her husband's..."

Post Edited (DianeB) : 4/12/2014 11:52:06 AM (GMT-6)

The "thinking" behind the that "checklist" is that those who fall into those categories are more inclined to abuse/divert drugs. I also think that another aspect is that since the quality of mental health care for the poor and/or those who have to depend on the "system" is so poor that those who have certain problems are more inclined to stay on that level. In other words, if they had good insurance and could afford quality mental health help and/or quality counseling that they would move past that difficult time in their lives.

The comment about the Mom with small children reminded me of a new story I heard several weeks ago. It seems that more and more children are being taken to the ER after getting into their grandparents medicine. This was attributed to more parents living with their grown children and the number of older adults who take pain meds. Good Grief ! If I was able to keep my 6 children from ingesting any meds when they were growing up, I can certainly do it with my grand children.

The thing with Medicaid, supports what I have said above. There is no distinction between someone who may have been a stay at home mom, is divorced and is on SSI for painful physical disabilities and is also on Medicaid and someone who has never worked because they have a drug abuse problem. Some people have the belief that if someone is on Medicaid that they have always been poor, never worked and don't deserve decent medical care. Unfortunately, these things are not accurate for everyone. The answer to the question, "if someone is poor don't they deserve to not have to live in pain".the politicians answer is that it is cheaper to not treat the pain and take chance on having to spend more money if they become addicted. For some reason, the politicians seem to ignore the cost of tings like Long Term Personal Care Services for those who can't do the most basic things like take a shower, get dressed or prepared a small meal without assistance due to pain. They also seem to ignore the most of tax payer dollars when it comes to those having to go into nursing homes because they can't live without someone to do everything for them, because of the pain and things like falls that they result in. The cost of a nursing home, even with medicaid, is expensive. It would be so much cheaper for the tax payers, not to mention the person in pain, to have their pain treated at home and them be able to do things for themselves.

Sorry about the rant. I'm finished, hope it makes sence. Thanks for letting me get it out.

Post Edited (Mercy&Grace) : 4/12/2014 8:43:11 PM (GMT-6)

I appreciate this forum is to vent, but the bottom line is until we get people most likely politicians in there working for us we are going to see all this go from bad to worse. We've got to figure out a way to unite. What they are doing is not fair nor is it ethical. Everytime I hear that abuse numbers have gone down or that OD's have gone down I think OK, they will stop the onslaught on pain meds, docs and patients. Instead it has increased and that makes no sense.

I have written to my congressman as well as leave a message. I did get the typical standard form back. I also wrote to that Psychiatrist who started a group Physicians against opiods or something like that. We each need to write our Congressmen and women when a new article is printed. We need to be doing everything we can to get our voices heard.

If anyone hears of avenues to write or call or email, whatever, share it so all of us can follow through. It's no longer an option to not do anything. We all are losing our pain management.

I forgot I wanted to hit on why the number of abuse and overdoses have risen, why heroin has made a comeback so profoundly.

The war on drugs and on the medicaid recipients has seen a return to the dark ages in their thinking. The state of Ky removed the coverage of outpatient drug treatment centers years back,they stopped paying for suboxone, Subutex and methadone clinics and the great state of Florida, capital of abuse and addiction followed their lead into the new year. Standing on the theory that if they can pay for the drug of choice that their addiction requires they can and will pay for their own treatment. Really? Really? Do they believe this is how addicts rationalize? Suboxone, Subutex is expensive, way more than heroin. Each suboxone strip is currently about $12 each at the pharmacy, Subutex runs close behind. Methadone cannot be prescribed by a physician for abuse outside a clinical monitoring setting, its not productive to hand an addict a bottle of pills every month he can get high on and Od on and assume he will take as prescribed.

When your the powers that be and your trying to convince me your implementing all these binding,restrictions on my availability of my meds are protecting the CPer and aimed solely at the addicts and meanwhile revoking their avenue to sobriety and treatment how am I expected to believe that?

I held true to the belief that the answers to this "epidemic " is treatment for addiction. You cannot leave them to their own devices and expect to fix this by making legitimate meds more difficult to obtain!! It didn't work during the oxy-c epidemic in the new millennium and its not going to work now!!

Its an addicts nature to find some way,some thing to fulfill that need. Today its heroin, bath salts,CO2,etc. History has seen model glue, gold spray paint,peyote,mushrooms, you name it they will find it.

I am a firm believer that treatment is the answer here and yet they fail or refuse to put into place a method or program to aid in getting at the heart of the matter? For every addict you clean up thats one less customer for the dealers right? They can't and won't do it without help. Look at the dynamics of their illness, its not possible except in rare cases.

One state,Massachusetts or Maine I can't remember has a law riding now due to the increase in heroin overdoses would allow a family to purchase a vial of Narcan when they have a child, spouse, etc on heroin to have on hand in case of accidental overdose to prevent death. Im stunned, absolutely stunned. Who does this? What kind of system supports that way of thinking? Change the laws that make it easier for a family to force them into treatment when it's got to the point of multiple life threatening overdoses in a week. Right now it takes an act of God and 4 pints of blood, your first born to have anyone over the age of 18 rendered into care. You dont tell a parent "here's a way to save your child's life in the moment " but we can't allow you to commit him to rehab to save his entire life!!! ...

Justanotherday: Your description of our illustrious Governors attack on everyone who is anything less than rich is spot on. He has denied untold numbers of elderly and disabled adults such things as prescription coverage. He just this past January dropped several thousand MaineCare clients, and his refusal to expand Medicaid (MaineCare), thus letting some 70,000 poor and unemployed from obtaining health insurance.
Bottom line if you live in Maine, and are living pay check to paycheck, as a lot of folks are. Your in a rut that your unlikely to get out of anytime soon.
I have my fingers crossed that this new pain specialist can help me. My PCP was just about there when trying to adjust my pain medicine. I switched from "Hydrocodone" to "Oxicodone". I did this once before about three years ago due to tolerance problems, I took the oxi's for about a year, at 20mg. then switched back to hydrocodone. After a year it was working pretty good again, for how long we didn't know.
My doctor did that because of my age, he was afraid I would become to tolerant to all the good therapies before I reached retirement age. That's why I sort of cringed when I read about the "Zohyro". I considered this to be a new pain therapy. I think if it can somehow survive the political wrangling, and the LEA tug of war, maybe, just maybe, we could have a new tool in our tool box.
As for my present calamity, I just need ten more MG's to my present daily dosage, It's what I had for a year a while back, I'm on ten MG's and my doctor can't go any higher due to policies (new policies) within the practice. so now I have to double my trips into town (about 45 minute each way) just to see this PM and try to beg him or her for ten more MG's to my daily dose. Why do I get the feeling I'm in some bizarre movie script? I'm going to go into the office this Tuesday morning, way to early for my tastes. Before I know it, I wake up strapped to a table with dreaded Politicians on one side, angry DEA officers drooling from the mouth, on the other, trying to decide who is going to get the chance to inflict the pain first........

I've said this before and I don't believe I'm alone. I have serious doubt regarding the number of people that "they" say die from pain med OD's. I realize there are some deaths, I just don't believe the actual numbers are anywhere near as high as everyone is told they are. Has anyone read anything regarding the number of death's in any state where the reported read the autopsy reports and saw the proof and wasn't just told what it was ? about 6 months ago, I read a short article written by a reporter looking into the number of these deaths in Washington state. The reporter said that they weren't able to verify the high number of deaths themselves.

I have the same question regarding pain meds and actual drug addiction. Not physical dependency, but addiction. Even the medical community seems to be confused about the difference at times. I realize that some people who are/would become addicted to any substance like this, will become addicted to pain meds. But, I don't believe this is the majority of chronic pain patients. I mean when you add the number of deaths and the number of people that are suppose to be/have become addicted to pain meds, the numbers just don't add up. Or maybe my math is worse than I thought.

lumiere, because most chronic pain patients need meds that "can" be highly addictive. And because of the dangers these meds can have for some people, there are tighter restrictions on their prescribing, and more oversight from other agencies that would normally have no place in patient care. No dr could lose their right to prescribe because they wrote too many prescriptions for insulin or for high blood pressure meds.