Politics of Pain

Posted by 19lin @19lin, Mar 2, 2018

I have chronic pain and have had since I lost my leg and injured my back in Vietnam in 1968. Now nearly 50 years later it has gotten worst with advanced age. In the last few years I started using strong pain medicine and now the powers that be want to shut it off unless your a cancer suffer. Even though many opioid users who follow their doctors advise do well and lead near normal lives. So I would like to open up discussion on the politics of pain if it is allowed?
I just received a notice from the pain news network (Painnewsnetwork.org) that the CMS (Centers for Medicare and Medicaid Services) is about to close public comment for citizens on payment for opioid type medicine through Medicare and Medicaid. If their proposal is approved they will restrict payment for pain medicine (opioid) to a small amount that needs to be renewed every few days. The Comments close March 6th and any citizen or concerned person may submit their comments.
For more detailed information please check the Pain News Network (painnewsnetwork.org) February 19, 2018 a post written by Richard Lawhern who provides a lot more information than I can.
You can write direct to regulations.gov (www.regulation.gov) look for Docket ID: CMS-2017-0163 . In the search box at the top of the page fill in the docket ID which should take you to the page with two requests for comment. I believe the one calling for payment is most important but you can comment on both. IMPORTANT make comments by the end of March 5, 2018. Just tell them how this will effect you or your family, of course family and friends can comment also. In addition contact you elected officials on the federal level and state level. Their office address and phone number is in the phone book or you can Google them and send an email. I did an internship in a congressional office and I know that they give more weight to letters sent through the mail but all comments make an impact so phone, email or write to make an impact. The pain news network article provides a direct link to make comments.
There are many sites that have formed to provide information about pain so if you wish to do something I recommend you get in contact with them to find out more information on opioid regulations.
I realize that most people come to this site for support, but if you would like to do more to lobby for change to opioid regulation then maybe we can bring up information on this site also. One of the things that counselors and Social Workers do is advocate for people, so as a Social Worker I have done some of this. 19lin

@patch

Whether it is electricity, freezing, or radio wave, these methods are all the same. they are designed to "cut/kill" the nerves that are causing the pain. I have had nerves cut (all of the 2nd branch and part of the 1st branch of he trigeminal nerve on the right side of my face. I think, though I could be wrong, that these procedures are not a permanent fix to the pain. I think most doctors/anesthesilogists are saying the relief can last up to 6 months. You might think this is a waste of time, but it is not. If you do get one of these procedures and get relief, then you may be closing in on a permanent fix for your pain problem. I say this because if you get relief, you KNOW what nerves are causing the pain. Always keep looking for a solution. I got about a month's worth of relief from my procedure. I was able to get a deep brain stimulator a year or two later. It cut my pain meds in half, and I was much more comfortable!!! They are making progress on chronic pain and controlling it, so what's not available right now might be available in the not too distant future!!! Good luck everybody!!!!

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I read the nerves can grow back and be even more painful. The 3rd Neuro surgeon we spoke with said no procedures or meditation will help.

The Pain News Network has an article that says the CDC admitted they over estimated the deaths from prescription opidids. https://www.painnewsnetwork.org/stories/2018/3/21/cdc-admits-rx-opioid-deaths-significantly-inflated . This was suppose to be in an editorial of the American Journal of Public Health. I don't get the journal so I can not check it out maybe some others on here do and can see what it says. 19lin

@wsh66

It's an uphill struggle to maintain access to opioids. I don't believe that all the drug abuse around opioids is happening from waylaid prescriptions and prescriptions that are tricked out of doctors. I rather believe that the drug companies are selling these drugs out the back door to drug dealers. The drug companies know how much money is made in the streets on these pills and they want a piece of that action. The previous director of the DEA was fired because he wanted to go after the drug companies for dumping opioids. Congress passed the law and Trump signed it preventing the DEA for prosecuting drug companies. Nice huh. They obviously have something to hide. The scale of the problem is just too large to be coming from legitimate prescription pads. I don't know how many of you are old enough to remember the Quaaludes epidemic of the 70s. It turned out that the company that manufacture Quaaludes was dumping five of every seven pills out the back door to illicit drug dealers and the company was shut down. now the drug companies have Congress on their side paid for by the drug companies lobbyist. Now they have a law that prevents them from being prosecuted. Shameful shameful shameful.

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Wow! I’m replying to follow up on what has happened? Did the bill pass? I am fortunate to have private insurance first and Medicare second as I am disabled due to a stroke that ended my career as an ICU Nurse in 2011 and left me with a complex Pain Syndrome in my Left Leg. I too have felt the government ‘s obsession with what they call the ‘opiate craze’. My primary physician has lowered the amount of rescue meds I receive and has lock me into a single dose on my main opiate refusing to increase the dose or shorten the time between doses even tho I have been at the same dose and schedule for 2 years and have been taking the drug at varying strengths for 6 years. The kicker is that he’s done it before; gone up in dosage and shortened the time between doses, all medically suggested. It’s the FDA. There watching everyone, looking for unusual activity. Whatever. It’s sad that good, honest people have to suffer BC of the bad apples.

Here in Oregon, the Board of Physicians recently imposed strict limits on the amount of opioid a doctor may prescribe. It all seems completely arbitrary, with little or no consideration for the individual patients and their needs or history of opioid use.

Jim

@wsh66

It's an uphill struggle to maintain access to opioids. I don't believe that all the drug abuse around opioids is happening from waylaid prescriptions and prescriptions that are tricked out of doctors. I rather believe that the drug companies are selling these drugs out the back door to drug dealers. The drug companies know how much money is made in the streets on these pills and they want a piece of that action. The previous director of the DEA was fired because he wanted to go after the drug companies for dumping opioids. Congress passed the law and Trump signed it preventing the DEA for prosecuting drug companies. Nice huh. They obviously have something to hide. The scale of the problem is just too large to be coming from legitimate prescription pads. I don't know how many of you are old enough to remember the Quaaludes epidemic of the 70s. It turned out that the company that manufacture Quaaludes was dumping five of every seven pills out the back door to illicit drug dealers and the company was shut down. now the drug companies have Congress on their side paid for by the drug companies lobbyist. Now they have a law that prevents them from being prosecuted. Shameful shameful shameful.

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Fortunately the bad apples have now spoiled the entire barrel. It is difficult for those of us who truly need the help. Those of us whom are serious about getting help for their pain have started looking into alternative methods. I can say there are methods that may help some do help some and even a little relief is better than none at all. We are all different. Distraction works the best for me even though it is oft difficult to push through the pain to do so.

@jimhd

After reading the information about limiting pain meds to a 3 day, it appears to me that it's dealing with acute post op pain, not chronic pain. Unfortunately, government seems to ignore the statistics that show that prescription opioid abuse accounts for 1% of the cases. The problem is that this doesn't address the fact that the other 99% are heroin and meth and cocaine addictions/abuse, so it's confusing and concerning that the focus seems to be on a medication that has been treating chronic pain effectively for centuries. Jeff Sessions said recently that if Tylenol isn't enough for acute pain post op, patients need to tough it out. An ignorant, insensitive, uneducated, ill informed statement,if ever there was one.
Jim

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I agree Jeff Sessions doesn't know what pain is.I'd like to jump in here to let you know I live in Calif. And my Dr told me they have allowed opioid prescriptions now to just be faxed over to pharmacy before like you,'ll I had to get a script every month you may want to explore this with your Dr.all states are different though.

@jimhd

After reading the information about limiting pain meds to a 3 day, it appears to me that it's dealing with acute post op pain, not chronic pain. Unfortunately, government seems to ignore the statistics that show that prescription opioid abuse accounts for 1% of the cases. The problem is that this doesn't address the fact that the other 99% are heroin and meth and cocaine addictions/abuse, so it's confusing and concerning that the focus seems to be on a medication that has been treating chronic pain effectively for centuries. Jeff Sessions said recently that if Tylenol isn't enough for acute pain post op, patients need to tough it out. An ignorant, insensitive, uneducated, ill informed statement,if ever there was one.
Jim

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you still have to hand carry a hard copy of Minnesota

https://www.painnewsnetwork.org/stories/2018/4/2/medicare-finalizes-plan-to-reduce-high-dose-opioids This article from Pain News Network indicates that the government will put new rules into effect on January 1,2019 that will limit those on medicare and medicaid from receiving over 90 mg of morphine equivalent units in 7 days with certain exceptions. We will have to wait and see, but the loss of pain medicine will hurt a lot of people. 19lin

@wsh66

It's an uphill struggle to maintain access to opioids. I don't believe that all the drug abuse around opioids is happening from waylaid prescriptions and prescriptions that are tricked out of doctors. I rather believe that the drug companies are selling these drugs out the back door to drug dealers. The drug companies know how much money is made in the streets on these pills and they want a piece of that action. The previous director of the DEA was fired because he wanted to go after the drug companies for dumping opioids. Congress passed the law and Trump signed it preventing the DEA for prosecuting drug companies. Nice huh. They obviously have something to hide. The scale of the problem is just too large to be coming from legitimate prescription pads. I don't know how many of you are old enough to remember the Quaaludes epidemic of the 70s. It turned out that the company that manufacture Quaaludes was dumping five of every seven pills out the back door to illicit drug dealers and the company was shut down. now the drug companies have Congress on their side paid for by the drug companies lobbyist. Now they have a law that prevents them from being prosecuted. Shameful shameful shameful.

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It has recently been documented that only 1% of the opioid overdoses result from doctors prescription pads. The rest come from sales of drugs on the street. Many "street" versions of drugs like Oxycontin actually contain Fentanyl which is at least 100 times stronger than the active ingredient in Oxycontin and other prescription pain killers, The problem is, the government needs to be seen to be doing "something" about the problem. There are too many small drug dealers to catch them all. Arrest one and two pop up in their place. Big drug dealers are smart, too smart for most cops. really big drug dealers are really smart and they pay off authorities so they can stay in business. They don't care how many retail dealers get popped, they know more are just waiting to get their start.

We, the people who really need these drugs, and the doctors who are willing to take care of us, who obey their Hippocratic oath, to first do no harm, like the harm they know arises from unabated pain, are the low hanging fruit. Our addresses, our phone numbers, our medical records and the information about our doctors and pharmacies take no effort to obtain. By harassing doctors, and blaming patients they appear before the news cameras as the great saviors of society. If these methods worked, overdose death would decrease, not continue to increase as they are. Law enforcement is great at busting users and street dealers. Law enforcement is completely impotent when it come to keeping heroin out of our country, from shutting down the illegal labs that are producing the fentanyl that is being mixed with the heroin and other drugs on our streets. So the news media stays focused on us and our doctors and they live in fear and we live in pain. Meanwhile the death rate from opiate overdoses continues to rise. Anyone like me who has been taking these drugs for years and will be taking them for the rest of our lives can tell you that obtaining the necessary prescriptions to get our meds has always been like pulling teeth. You are scrutinized, doubted, looked at as if you are scum and even accused of being "drug seekers" by both doctors and nurses. This in spite of the first thing they are told in school about pain is that they or anyone else can know what another individuals pain feels like or how bad it is. They also know that the more control a patient has over the level of drugs they use the lower those levels are. (This is due to the fact that getting that control greatly lowers their level of anxiety and therefore lessens and eases their experience of pain.)

I don't see any improvement of this situation anywhere on the horizon. My advice is if you can get a pain pump, do it. It's obvious that no drug abuser is going to trade 250 mg. of narcotics a day for 2.75 mg. of narcotics a day. Oh yea, it works a lot better too.

Love and Blessings to all my fellow travelers Don't let them shame you, don't let them demand your silence. Call them out on their failure when they don't help you with your pain. This is the worst failure of the medical establishment since the use of leeches and the practice of "bleeding".

Liked by 19lin

Congress is now taking up Opioid issues with a bunch of new bills. https://www.medpagetoday.com/washington-watch/washington-watch/72588?xid=nl_mpt_DHE_2018-04-30&eun=g1223246d0r&pos=0&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202018-04-30&utm_term=Daily%20Headlines%20-%20Active%20User%20-%20180%20days This article gives some information on what is happening so now is the time to write your Representatives and Senators again.
President Trump has indicated he will back the new requirements of limiting Medicare and Medicaid from paying for 90 mg of morphine equivalent units for 7 days. Over that the pharmacists must call the doctor to talk about the patient and their real needs.
In my opinion this is just undue harassment of all involved. I know pharmacists will call doctors anytime they feel something is out of order with a prescription they do not need to be ordered to do so and doctors have a lot more to do than be on the phone with the pharmacists. All this means is that pain patients will loose. 19lin

@19lin

Congress is now taking up Opioid issues with a bunch of new bills. https://www.medpagetoday.com/washington-watch/washington-watch/72588?xid=nl_mpt_DHE_2018-04-30&eun=g1223246d0r&pos=0&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202018-04-30&utm_term=Daily%20Headlines%20-%20Active%20User%20-%20180%20days This article gives some information on what is happening so now is the time to write your Representatives and Senators again.
President Trump has indicated he will back the new requirements of limiting Medicare and Medicaid from paying for 90 mg of morphine equivalent units for 7 days. Over that the pharmacists must call the doctor to talk about the patient and their real needs.
In my opinion this is just undue harassment of all involved. I know pharmacists will call doctors anytime they feel something is out of order with a prescription they do not need to be ordered to do so and doctors have a lot more to do than be on the phone with the pharmacists. All this means is that pain patients will loose. 19lin

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Add on: another good article on doctors and pain is located here: https://theconversation.com/why-its-so-hard-for-doctors-to-understand-your-pain-93526
It not only shows how red heads react to pain meds (Yes I am or was a red head, its now gray) it also discusses some of what doctors are up against when working with pain patients. 19lin

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