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Posted By : Todd Birman - 5/16/2017 10:00 PM
Been on fentanyl patch for working on over 17 years now I live in Illinois at this time for two years now the insurance company doesn't want to pay for my fentanyl patch to tell me you have to have cancer to have this truck but if I could bye insurance from another place other than what I get for State Insurance through Illinois they will cover a certain percentage of my meds be in town and make $700 a month through SSI it's a bit difficult to come up with a hundred and fifty to $200 for the meds that I got a half they put me on morphine at 5 milligrams now they had me onmethadone 5mg 1 pill 2x a day . Needless to say this hasn't worked out either neither one of them this the morphine seem to add on at the pain than what I had before and II drug did seem to do much good neither I'm having problems with pain in my abdominal area I'm so dizzy I can't do much of anything I got a little dog that I got to take out for walks and I can't even do that I would like to know if anybody else found any sort of relief anyway I would like to know what they gave you I've got a herniated disc and a pinched nerve in The L4 L5 region of my back my doctor seems to tell me too many different things but this last things she's saying that they made it illegal for people like me that is on assistance through the state that the insurance company won't pay that I got to Fork over the money now which I don't see how that is even legal to do they've got a drug that works and they can't find anything to help me out so my life is living in hell and they're not allowed to give me any meds to stop the pain I also now start having migraines all over again I went to the emergency room twice for the pains in my bag first time wasn't so bad second time that thought it was some freakin junkie that I need the score so I quit going back to them figured out just easier to suffer at home again I don't see where this is legal I am looking into a lawyer to see what I can and can't do I'm hoping I can sue but who knows what's going to happen about that at this point in time I'm really in need of help of wondering if anybody got any relief from any of the meds that their doctors might have gave them and worked but again I don't see where this is legal if this drug is used to stop pain and there's nothing out there that will help somebody like me with chronic pain why can't I get it just for the chronic pain instead of saying no you gotta suffer I've been in bed for well over a month now month-and-a-half almost and I haven't seen my dog in a month and a half he's a type of animal that won't eat if I'm not around so I'm hoping it dead when I go getting which can better not be I will definitely sue somebody over that one but yes I need to know if anybody's found anything out or if found out if this is legal or not I am seeking a lawyer to find out here one of these days when I can actually get out of that again I'm trying everything I can to get rid of the pain but it's just not I can't think it away I was pretty good at doing that 17 years ago but it's not working today over 17 years regardless please let me know what's going on if anybody's found out anything get my email address if you can look it up go ahead I don't think I can put it out here yeah I got to find out if if there's anything out there that will work I cannot afford to Fork over somewhere in the neighborhood of a hundred and fifty to $200 a month on these meds again I want to get $700 to live on and I got a car it's not much but I got a car and I've got an apartment I don't know what I'm going to do I really don't if anybody can help please at least say something try to find a way to get a hold of me thank you

Todd A. B
Again thank you for your help on this .
If I find anything out that may help anybody else I will post another posting on here on what the lawyers said and if I won this lawsuit and anything else that I can think of I will add another post later to keep you all informed thank you so much

Posted By : (Seashell) - 5/17/2017 9:15 AM
Todd:
While I can empathize with your plight, your thoughts of legal proceedings against the state of Illinois will likely not have any traction or merit.

In March, 2016 the NIH and CDC released a nationwide Pain Strategy that provides strict prescription and dosing guidelines for opiates/narcotics. In addition, each state has enacted drug monitoring programs which tract narcotic prescriptions by both the prescribing MD and the recipient patient.

If your pain is pain due to a lumbar nerve impingement, I am doubtful that the need Fentanyl patch could be substantiated under the current Pain Strategy guidelines. Fentanyl, as you likely are aware, is one of the strongest of the opiates available. It is generally reserved for cases of severe pain with a diagnosis that falls within Palliative Care or Hospice care.

There are extended release oral opiates/narcotics available.

Who is providing your pain medication? You mention that you have been placed on methadone and morphine but with unequal benefit of the Fentanyl patch. What is the prescribing physician communicating to you regarding the change in medications?

Many people, across the country, are experiencing similar situations as your own - situations in which their pain medications are being changed and dosages decreased unilaterally by the prescribing physician. Physicians are reacting to the Pain Strategy guidelines because they fear federal and state repercussions and loss of their license.

These are difficult times for everyone who has the misfortune of enduring chronic pain.

I hope that you are able to make effort to get out of bed and move and mobilize. Loss of strength can be a rapid downhill course when lying in bed. I understand it is difficult to move when experiencing pain. Both of my hips are "crumbling" due to avascular necrosis (lack of blood supply to the femoral heads). Despite severe pain, I am up and walking. I walk and walk and walk . . because I fear the loss of being able to walk more than the pain I experience with walking. Please do make a concerted effort to be up and walking. I am sure that your little dog misses you tremendously and would like to be reunited. I have a little tea-cup Maltese, Molly, who is my lifeline. The love of a pet is genuinely life affirming.

Just a suggestion: It is difficult to read your post as a single, long paragraph. It would be helpful if you compose your narrative by formatting a series of shorter paragraphs. It would be easier for the eye to follow and track your writing and the content of what you are wanting to express.

I hope that you can meet with your prescribing physician and decide on a new pain management strategy that meets your needs.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : straydog - 5/17/2017 11:23 AM
Hi Todd & welcome to Healing Well. I am sorry to read about the situation you are in concerning pain medication.

What Seashell has written above is the absolute truth. Most of the people that suffer with chronic pain are have already gone through where you find yourself at now. The restrictions are very much real & to be honest I am surprised that you have been getting the Fentanyl for this long.

If I understand correctly you are on Medicaid for medical treatment & for your prescriptions is that right? If this is true there could also be changes that has been made in their policy as to what medications they will pay for. I do know that in some states Medicaid will not pay for pain mgt treatment at all. The people have to pay out of pocket to see a pain mgt dr & same for pain medications. It sounds like to me you need to call & find out if they are no longer covering pain mgt.

As for getting a lawyer involved you will be wasting your time. There is no law that states a dr has to give a patient narcotics, that is strictly the drs decision. Trying to force a state to pay for medications is totally out of question too. You will be better off spending your time trying to find ways to help yourself. I am not trying to sound harsh or cold hearted by any means, I am being realistic. I have been on the chronic pain journey nearly half of my life & I am almost 65 yrs old.

And as you said going to ER because of pain is a complete joke. We are treated like we are addicts & get told we do not give out pain medication. The stigma attached to chronic pain is out there. Apparently you have not kept up with all of the changes & rxing guidelines. This has been going on for several years now. It has been all over the news & continues to be in the news. Every time someone dies whether its an accidental overdose or not, it makes headlines & they point the finger at the narcotic they were taking.

Hopefully you will come up with a plan to help yourself. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 5/18/2017 5:26:44 AM (GMT-6)


Posted By : Todd Birman - 5/17/2017 11:47 PM
I'm not trying to sue for meds more or less but my doctor told me that the law said which I think she's lying to me that if I try other drugs to find out if they work or not then they won't let me get on the fentanyl patch again we went through all the meds that I was allowed to use and none of them worked and now they're not paying for my meds this is what why I can't believe that I got to suffer and stay in bed for the rest of my life I just don't understand how they can pass along so well we realize you hurt really bad so screw you I can't see that happened what about the they're all that they took to help people and and get him to the care that they need to keep him going and what not I mean help animals have more rights than what we do this is where I don't believe that it's right everything they let me try as you seen in my above ad none of them work so they said well why would he want to do I said was nothing work and want to back on that now she wants out of pocket. I can't believe they make a law with me making $700 a month that I can't get anything to relieve the pain I don't see where that's legal so I'm supposed to suffer and never get out of bed again

Posted By : straydog - 5/18/2017 7:43 AM
Todd, I am having a little trouble following your post. So, my questions are, has Medicaid stopped paying for you to see your dr? Has Medicaid stopped paying for all of your pain medications?

Since you do not believe what your dr is telling you about Fentanyl why not call Medicaid & ask them about this. That way you can find out for sure what they will cover.

It is not illegal when a dr does not prescribe a certain medication to a patient. All drs have the legal right to refuse to see a patient & prescribe medications, so your dr is within his/her legal rights, the law is not being broken.

Having Medicaid can be a problem for many patients across the country. My own PCP no longer treats anyone 18 yrs & older that has Medicaid.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 5/18/2017 9:26 AM
I agree with Susie . . . I am having difficulty following your your post. I am have difficulty following your train of thought. It is also difficult to read a lengthy paragraph where the lines of type continue without a break or spacing.

Everyone on this forum, to one defeee or another, is in pain.

I am in pain. Constant pain without reprieve. But I demand of myself that I am up and moving and walking and engaging in the world as best as I can. I am up and bearing weight on my legs and walking even with advanced avascular necrosis of both hips.

The best that any of us can do is to do the best that we can do.

I do find it difficult to believe that the fentanyl patch is the only medication or modality that provides you with any relief. Your accusation that fentanyl is the only viable option for you is not going to carry you far in discussion with your care providers.

In point, you are say: If I cannot have access to the fentanyl patch at the dose I am used to then I will remain in bed.

I challenge you to rethink this position. I urge you to open your mind to other possibilities.

Control of one's pain is more than expecting that a doctor will provide you with a narcotic. Anyone with ongoing pain has to be self-responsible and self-motivated to developing other tools to modify the level of pain experienced.

What does that mean?

It means being faithful to daily exercise and stretching of muscles and joints, despite pain. It means using heat and/cold to ease aches and pains. It means practicing relaxation techniques and mindfulness. It means finding distraction - finding a craft or hobby, reading, gardening, whatever suits your fancy.

Control of your pain experience is more encompassing than the Fentanyl patch. And, to be honest, rare is the case where the Fenranyl patch will be prescribed outstanding of Palliative Care and Hospice Care.

These are new and different times for those of us with chronic pain. The regulatory and prescribing environment has changed.
- karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : straydog - 5/18/2017 11:42 AM
Todd, please understand that we are not trying to come across as being harsh or uncaring about your plight. What we see here all the time is people coming here that were on certain drugs for a period of time & then suddenly the drs change everything or stops prescribing.

Those patients got in a comfort zone because they were happy & content getting their medication & thought they were all set until something like this crops up. In that comfort zone they did not keep up with any of the issues about treating chronic pain, they were happy because they thought there would never be a problem. Like I said before this has been all over the news for several years now. As a patient we must stay informed about insurance issues & changes, guidelines set out by the CDC, NIH & DEA. These are the 3 entities that have all of the control over the drs & patients. These changes have been in effect for quite a few years this did not just happen.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Todd Birman - 5/18/2017 9:05 PM
I'm on ssi Medicaid I think I do not have the red white and blue card. I was under the assumption that they took an oath to help you with any medical problems that you had had L4 L5 is herniated a pinched and now the funny thing is they she's telling me that this thing off 75 is reserved only for cancer patients but yet if I pay for outright I can buy that will make up your mind what is it cancer only or I can get it if I paid for it but you can't have it both ways it's one or the other

Posted By : (Seashell) - 5/18/2017 9:45 PM
Todd:
I am on Palliative Care. It is reserved for people with a serious, life-threatening illness. It is similar to Hospice. The difference is that I am not yet considered "terminal" with a projected end date.

My narcotic medications have to be approved by four different entities: -'1. My prescribing Palliative Care MD; 2. An independent pain management physician 2. MY insurance company utilization review committee; 3. The state of Oregon narcotic preclscription oversight Committee.

Fentanyl is a potent narcotic. It's use is becoming more restricted to hospice and Palliative Care patients.

Medicaid has established formularies, as do private insurance companies and group plans. The drug formularies list what drugs are covered and under what circumstances.

It may well be that MediCaid in your state does not pay for Fentanyl. It is increasingly the case that Medicaid is not covering pain management physician office visits. It is also the case that Medicaid is not paying for narcotics.

You seem to think that you are entitled to coverage of the Fentanyl. I think you will find that this is not the case.

While I know a pinched nerve root is painful, I do not sense that the condition of a pinched lumbar nerve root will meet continued justification for the fentanyl patch reimbursed by Medicaid (or any other medical insurance provider, in all honesty). That you have been on the Fwntanyl patch for over 10 years for the same pinched nerve root is a reflection of days now gone when prescription practices were more lax.

Is there any reason that you have not had a microsiaectomy for relief if the pinched lumbar nerve root?

I wrote a bit about cancer pain in a reply to Harmony. Cancer patients often have more discretionary narcotic allowances simply due to the nature of the disease. Let's face it, a good number of cancer patients will succumb to the disease within 5 years. There is not the same concern for narcotic tolerance and comcern for dosing at higher potency. It is not that cancer pain is unique from other expressions of pain. Rather, the difference is in looking at the timeframe of
Narcotic use and projected or estimated life span.

I would encourage you to "let go" of the your reverend wanting of the Fentanyl patch, to be paid in full by Medicaid, for a pinched lumbar nerve root.

I would encourage you to contact your MD sand see what options are more availing to you with MedIcaids' current formulary of approved medications. I think you will make more forward progress.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : straydog - 5/19/2017 6:27 AM
Todd, it appears that Medicaid is your problem. From what I am gleaning from your posts the dr is telling you that Medicaid is no longer going to pay for your Fentanyl. By the dr telling you that you would have to pay out of pocket for it explains it all. Your dr cannot over ride what Medicaid will or will not pay for. Medicaid has the control over your care, not the dr.. Her taking an oath has nothing to do with what medications Medicaid will or will not pay for.

Once again, I suggest that you call Medicaid & discuss this with them what options you have for pain medications.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Mercy&Grace - 5/20/2017 8:42 PM
Your problem is Medicaid. There are no laws that state Medicaid has to pay for a particular drug. Has your doctor appeal this ? If not, your doctor may also be part of the problem. Maybe your doctor doesn't believe you need the patch.

How old are you ? Have you paid into enough to Social Security to be eligible for Medicare when you turn 65 ?

CENTERS FOR MEDICARE & MEDICAID SERVICES (CMS) OPIOID MISUSE STRATEGY 2016-
/www.cms.gov/outreach-and-education/outreach/partnerships/downloads/cms-opioid-misuse-strategy-2016.pdf

Posted By : Mercy&Grace - 5/20/2017 8:49 PM
Fentanyl is on the Illinois Medicaid Preferred Drug List. Although I don't know if this includes the patch. I agree you need to call your state medicaid program and ask if they cover the fentanyl patch for non terminal pain. Perhaps they won't pay for the dose you are prescribed. But, they might pay for a lower dose.

Preferred Drug List Illinois Medicaid-
/www.illinois.gov/hfs/SiteCollectionDocuments/pdl.pdf

Posted By : (Seashell) - 5/21/2017 9:39 AM
Todd: Being in moderate to severe pain due to a lumbar disc protrusion for 10 years in itself begs for a more definitive approach than ongoing narcotics.

Surgical micro-disectomy has become a fairly routine procedure. It is an outpatient procedure in some cases, discharge to home at the end of the day. Pressure to the nerve root is effectively relieved. It certainly would be worth your while to inquire as to whether a micro-disectomy would benefit you.

One problem with nerve-type pain is that the nerve can become irritated over time so that the nerve continues to perceive pain even when the physical cause has been removed. Nerve pain has a long refractory period. Nerves can continue to "feel" pain even when the original cause of the pain is no longer present.

If it has been a while since you have had an MRI and evaluation by a neurologist it neurosurgeon, it might behoove you to have a fresh set of eyes evaluate your situation. Things can certainly change and alter over the span of 10 years.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Mercy&Grace - 5/21/2017 11:51 AM
(Seashell), unfortunately when someone has Medicaid, they don't have as many options as those with other types of insurance have. Depending on the medication/test/procedure, etc there is often a lot of paperwork involved for the doctor. A lot of private Medicaid doctors don't want to do the needed paperwork. It might benefit the OP to go to a public hospital for some things.

Posted By : (Seashell) - 5/21/2017 4:34 PM
Mercy&Grace: I apologize for suggesting avenues that may not be open to the original poster. I do not know the finer details of Medicaid.

I pay for private insurance through the state exchange and the ACA. Even with a top tier plan, it is difficult to navigate pre-authorizations, co-pays, and insurance mandates. I spend a lot of money for very little of positive substance. I think the current environment of health care is difficult for almost everyone.

I hope the original poster is able to find an understanding with his physicians and MediCaid that can give him relief so that he can get out of bed and begin living . . . and have the return of his dog, complete with tail wags and wet nose kisses.

Hoping for better days for one and all,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Mercy&Grace - 5/21/2017 5:13 PM
SeaShell, a lot depends on the state you are in. Although all State Medicaid Programs have limits, restrictions and some things they do not pay for. Most states use Medicaid Managed Care Organizations to manage their Medicaid program and Medicaid Recipients.

There is something I'm not clear on about Medicaid not paying for the patchs the OP is,prescribed. Maybe I misses it. Who told the OP Medicaid wouldn't pay for the patchs they were prescribed ? Did the pharmacy tell them this? Did the doctor? Did they appeal the decision? Did their doctor fill out the paperwork? Sometimes, like with other insurance, if you fight tooth and nail, you may get what you need. Although it can take months. It is also possible Medicaid won't pay because they don't feel this is appropriate treatment for the diagnosis code the doctor wrote on the prescription.

Posted By : straydog - 5/22/2017 7:06 AM
The OP was says he was getting Fentanyl & he went in & the best I can tell the dr told him they would no longer pay for it. It could very well be that either the dr no longer wanted him on Fentanyl or Medicaid decided his diagnosis did not warrant continuing with Fentanyl. This is why I suggested he contact Medicaid directly. I have a feeling Medicaid is the issue we all know how these entities in particular are changing towards pain mgt.

Posted By : Mercy&Grace - 5/22/2017 4:51 PM
I may have found the problem.

At the link below on page 1 read Prospective Utilization Review & on page 2 read 9.21.16 Illinois Drug Utilization Review Board Meeting Summary

Drug Utilization Review Board Meeting Summary Wednesday, September 21, 2016-
/www.illinois.gov/hfs/SiteCollectionDocuments/ILDURBoard92116minutesapproved.pdf

Posted By : (Seashell) - 5/22/2017 7:22 PM
Mercy&Grace: Excellent detective work your part in researching the Illinois Department of Health meeting minutes. You have identified the original posters' concerns. You found the needle in the haystack. Kudos to you for your efforts in locating the relevant information.
- K -

Posted By : Mercy&Grace - 5/22/2017 7:24 PM
(Seashell), Thank You Sweetie. I don't have as much time as I use to so sometimes it takes me longer.

Posted By : straydog - 5/22/2017 7:25 PM
M&G is a true detective, she gets in there & researches so much stuff!!

Posted By : Mercy&Grace - 5/22/2017 7:49 PM
straydog, Thank You Sweetie. I try.

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