The saga continues with adequate pain relief

Our doctors have been sent letters by the insurance companies demanding prior authorization for narcotics and that the doctors document that patients show improvement to continue to receive their medications. I think we need a new case, as in the Jimmo Settlement, or legislation, to include medication as treatment that cannot be denied.

We who are in chronic pain and will not improve but need services to prevent deterioration should be aware of the Jimmo v Sebelius case which decided in our favor. The official government Jimmo case website: /www.cms.gov/Center/Special-Topic/Jimmo-Center.html There is a clarification page from the government also: /www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/SNFPPS/Downloads/Jimmo-FactSheet.pdf

I'm a Post-Polio Syndrome (PPS) patient, and I will not improve. I will continue to deteriorate. (Many other conditions, including broken neck and other injuries with permanent sequelae.) On my last visit to my pain doctor of ten years I was required for the first time to have a urine test. Yes, I know most others have that all the time, and I don't object. Is this going to be every visit now? What does "recent" test mean?

The main concern is the government and insurance companies are trying to get us off our pain meds, and we don't have a case, like Jimmo, to protect us from unreasonable discontinuation. While I agree with monitoring and control, denial because we do not improve is unconscionable.



Gave your post a title.

Post Edited By Moderator (straydog) : 7/5/2018 10:25:04 AM (GMT-6)

I just came from my 'pain dr's' office and wanted to ask what the understanding is of the new laws that went into effect a few days ago and saw these posts. I do have the upcoming cervical spine surgery I keep posting about but even after I am surgically repaired I will still have a serious issue with chronic pain. The visit I had today approved my meds for this month because of the surgery but then will decrease. What?! I barely get by on what I have. The option they suggest is medical marijuana which I don't know much about but sounds sketchy. My pharmacist and I discussed the new laws and he said they suggest things like PT which obviously I have tried and will not help my conditions. So frustrating! Life is hard enough without the rug pulled from under you.

SO TRUE, Straydog! So frustrating! I was trying to educate myself on the changes in the law and I think I am in the 'exempt' category but the person I saw today did not seem to understand my diagnosis and probably did not understand the changes in the law. I hate to sound like a victim but being at the mercy of the pain dr.'s is rough. I will try printing out the changes and bringing them to the next visit with a letter from my Rheumatologist but unless you have something that fits neatly in a box you need them to at least pay attention.

Susie, the shortage of injectable opiates. Is due to problems at one of the Pfizer manufacturing plants here.

I assume the news laws referred to here. are the ones that went into effect in Florida July 1. Those are for acute pain. Doctors are suppose to write something on prescriptions that are,exempt from this,new,law. Unfortunately, many doctors do not actually read these new.laws themselves. They go by what others in the medical and legal field tell them.

I do not see anything legally requiring doctors to prescribe opiates for any particular conditions. It will never happen.

/www.statnews.com/2018/03/15/hospitals-opioid-shortage/

Post Edited (Mercy&Grace) : 7/5/2018 4:57:30 PM (GMT-6)

Hey M&G, so good to hear from you!! I hope you are somehow managing the heat in your neck of the woods. It has been horrible here in Tx & we are in such a drought. Triple digits in June is not a good sign ever.

The reports I have been reading is across the country on the shortages for hospitals. From what I have been reading it is not the result of Pfizer. Yes, it is the IM pain medications & oral. They are now admitting the forced reduction in mgf has caused a big dilemma. Hospice is another area being impacted, cancer patients, well you know. The CDC has made a huge mess of things.

The availability problem will impact us. Recently my pharmacy could not fill my script. They finally found a sister store that could fill it. I have never had this happen. Not to mention the pharmacist wanting my life story as to why I was on the medication. I don't have a problem telling them, what I have a problem with is every Tom, Dick & Harry is walking right by while I am talking, zero privacy!!

The goal is to make it so a GP/PCP cannot write a pain script at all.

Susie, do you have to go to a pain dr in your state? In FL you have to go to one for the pain meds. The Primary Care Dr's cannot fill it...or will not though they say it is the law. You are supposed to go to one of the pain places left (got rid of the pill mills which is a good thing) and they monitor you and prescribe it. I have heard that filling the scripts earlier in the month is better since they run out. This is ridiculous for monthly necessary medication. The pain places treat you like a convict not a patient though they take the insurance and big co-pay.

Thanks, Susie. I am not that new...maybe about 10 yrs. The more I get diagnosed with and the more age contributes the more cranky and frustrated I am with the politics getting in the way of my medical care.

I think you have more respect and compassion for the PM Dr's because they obviously treated you with respect and compassion. I might feel that way, too, if treated decently. My frustration is very much with the regulatory boards and politicians that want to get on the no-opiod bandwagon before the next election. But the PM places and Dr's I have experienced are to blame as well. Prior to retiring from my day job I was a professional who carried malpractice insurance and had patients. Over the years things changed with insurance for patient reimbursement and it was necessary to take a bigger patient caseload to make a good living. I never took that out on patients or gave them less time or attention. You are fortunate to have worked with and now work with some good people. My experience has been to be treated poorly. Appointments are greatly overbooked and waiting an hour to be seen is a good day. They do not apologize or explain the wait. Staff seem underpaid and not well trained and most have poor attitudes. I do not think the people I see (after the first appointment a PA) understand my issues or even look at what they are. I am educated and prepared for my appointments but if nobody is listening it does no good. If I get the prescriptions, which so far I always have, I consider myself lucky but the day is ruined and flare-ups from the stress result. The places are not really clean and I have no problem with compliance with any requests they have but the tone is that of somebody on probation I think. Luckily I don't know about that! But negative, not like a patient seeing a Dr for a medical problem. The latest twist was telling me the pain meds have to be decreased for everybody due to new laws, not true, and not even looking at me as an individual. And then pushing the medical marijuana they also provide even though I don't really see that as the same thing. I need to function and I am not sure that is an option.

Preparing to have that surgery next week the last thing I want to worry about are post-op meds. I am not familiar with a pain pump...Maybe time to research that. Thank you, Susie and I appreciate hearing your experiences. I also appreciate being able to vent! Thanks for doing a great job with this forum.

Thank you, Susie! I am going to look into those sites. Since I have not heard about it I am wondering if it is done in my area. And of course if I can find a decent PM. After I knock out this ACDF I am going to go to Mayo Clinic for a full eval and course of treatment. I can't say my Rheumatologist (another PA) is good either but at least it is not unpleasant at the office. I am hoping Mayo can set me up with some things the locals can carry out. I appreciate the support. I felt so much better speaking to you.

Excellent advice and inspiration. I get worn out with not feeling well, especially pre-op when I have to be off my anti-inflammatory and autoimmune meds. You really have helped give me some renewed interest in continuing to fight for decent treatment. Thank you for that! I do have to get the surgery behind me because I am high strung anyway, lol, and this is adding to that. After recovery I am going to push for better treatment. Thank you again, Susie. Have a good weekend!

Karen, ugh. I have connective tissue disease as well...I have not been in touch with or met anybody else with that though I am sure many have it. I also have psoriatic arthritis and AVN of the hip which was replaced. I probably have other things...I tested positive for scleroderma as well. I appreciate your wise words. I am looking for something I am not going to get in the medical community, unfortunately you are right. And I know that. I have had orthopedic and assorted unusual things over the years but just got diagnosed a few yrs ago and have been working my way through the meds that supposedly treat these issues (not cure, I know) but as I get worse I get even more upset about the difficulty with pain mgt and the lack of interest/knowledge of my treating dr's and p.a.'s. Last visit I asked the PA I see for rheum. a question and she 'googled' it on her phone and I lost it...I told her I wanted a Rheumatologist's opinion I could google things myself.

I have never heard of palliative care but I will certainly look into it. I was just diagnosed relatively recently as I mentioned and I have been distracted with surgeries and the prep/recovery with those and I hope for myself and my family there is more treatment than I am getting.

Thanks for sharing that! And I will look into it for sure. And I do appreciate the comments because I am setting myself up for disappointment. I will look into palliative care. Thanks for the good wishes and same to you!

Hi, Alcie. I feel just as impatient about this. Pain medication seems to be something that is grouped in the BAD category, and needing it makes some of us (speaking for myself only maybe) less than good patients. I totally understand the Dr's having to comply with monitoring and judgments of them and their practice based on what they prescribe. Many do understand our need for these meds but do not want to risk their license or reputation by prescribing them. I think, and I hope I am wrong, that the current trend towards decreasing pain meds for everybody will continue because there is an Opiod crisis. I am sorry there is but it has nothing to do with those of us who need the medication to function somewhat. And it has nothing to do with those of us who take it responsibly. So maybe years from now the trend will go back towards prescribing what patients need...no more and no less...but I don't have that time to wait. And I am sure everybody in this group does not have endless time to wait for that.

The paper you are referring to is interesting. I have not seen it directly. It says in order to provide reauthorization of pain medication you have to show improvement? Sounds like improvement would need you don't need it. What am I missing?

They mean improvements in the pain level and ability to function. They do not mean the condition has,to improve. It is common for pain patients to tell their doctors opiates do little good. If they do little good. The risk does not outweigh the benefits.