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So many of us are suffering and nobody hears about it. Our goal for this section is to give patients a place to tell their stories. 

Brenda - Insurance denied opioid prescriptions

Jordan - denied post-op pain meds due to having OUD

Michele - denied post-op pain meds

Bonnie - Chronic Pain, denied pain meds

Michael - Chronic Pain, denied pain meds

Brenda - Insurance denied opioid prescriptions

Brenda (mid-50’s female) – I’ve been a chronic pain patient since 2008, and I have been on Social Security Disability since that time as well.  Prior to that I was a National Sales Director for a non-profit organization which was a job I loved.  In addition to being disabled myself, my husband has been disabled since 2019 from a genetic disease which has been found in only three families in the world.  He’s suffered over 30 strokes, and has cognitive dementia as well physical problems.  I’ve had to become his guardian, conservator and caretaker which has certainly been no easy undertaking for me.

Similar to many chronic pain patients, I have multiple disabling conditions, including failed back syndrome, double crush syndrome (severely entrapped nerves down my left leg due to nerve damage), left hamstring sciatic nerve entrapment, and endometriosis attached to my ilioinguinal and iliohypogastric nerves (ouch!).  I’ve had 17 surgeries since 2008 to deal with these conditions as well as osteoarthritis damage in my left ankle and left shoulder, and I have another surgery scheduled for next summer.  I need to have more surgery on my left leg to prevent permanent nerve damage, but it needs to be treated by a peripheral nerve surgeon and there are only about 40 in the world.  I’ve had 3 surgeries done by a peripheral nerve surgeon in Washington, D.C., but now that my husband is also disabled and I incur high legal bills to deal with his guardianship/conservatorship, I have no money to pay for the travel and no one to watch my husband while I would have those surgeries. 

I have been very fortunate to have an amazing pain management doctor since 2008 which I’ve learned is a rare blessing as most patients cannot get proper medical care for pain management.  To treat chronic pain patients effectively, there is a lot of trial and error and often the best relief and improvement in function and quality of life often come from more than one pain-relieving method.  For me, I’ve tried many different therapies and the ones that are most effective for me are opioid pain medications and an implanted spinal cord stimulator.  I suffer from horrible left-leg sciatica and low back pain, and cannot sit for more than 15 minutes.  My recliner is my best friend.

In December, 2017 I received a letter from my pharmacy insurance at the time, CVS Caremark, stating that they were overwriting my doctor’s prescription for opioid pain medications and force-tapering me against my will effective January, 2018.  Force tapering and abruptly cutting chronic pain patients off opioid pain medications has been proven to be very harmful, and has lead in many cases to patient suicides and suicidal ideation.  The FDA and subsequently the CDC were forced to issue alerts in the spring of 2019 that this practice could cause great harm, but the wheels had already been set into motion and patients are regularly being cut off opioid pain medications as well as being force-tapered abruptly against their will even today.  I had better pain control and function while on my opioid dose prior to 2018.

I’m on Medicare and there are only two Part D pharmacy insurance companies in my state that will cover the opioid pain medications I’m taking.  I got a notice a couple years ago from Aetna (my pharmacy insurance since 2019) that one of the opioid medications would be changing from a tier III to a tier IV, and this would have resulted in the medication going from $40 per month to about $160 per month.  Thankfully I found out that you can request a tier exception, and my pharmacy insurance allowed that.

If I were to be cut off opioid pain medications or force tapered any further I wouldn’t be able to care for my husband at home anymore, and he would have to be sent to a long-term care facility which would cause him to go downhill mentally and physically.  Opioid pain medications allow me to have some sort of life, and I can manage some of the light-duty household chores as well as bill paying.  They have also allowed me to enjoy time with my kids and grandchildren.  I only take my medications as prescribed, and I have never abused or sold any of them.

My grandmother suffered from multiple sclerosis (MS) and when I was six years old (approximately 1973) she put a bag over her head and ended her life as she couldn’t take the pain anymore.  Untreated pain and undertreated pain have caused major patient psychiatric issues for a very long time, predating opioid pain medication therapy. 

Jordan - denied post-op pain meds due to having OUD

 I had a c section and tubes tied in June. No pain meds. I take suboxone and have for 1 year. I’ve tapered to 1mg once every other day. I need oral surgery and they won’t give me something to relax me or treat my pain. I have 4 abscesses and my dentist was going to write it until he saw I was on suboxone. My dr has approved it since I am on a low dose and have had no relapses. Clean drug test for over a year. I am desperately trying to do something since my insurance is about to run out.

Michele - denied post-op pain meds

 I have had two prior foot surgeries , one with this foot surgeon ( ortho surgeon) I went in because of continued pain and I have had to resign from my executive position making almost 150k a year because of my inability to walk and travel ( although I could work from home and my employer refused) and my surgeon nurse said that they don’t prescribe pain medicine after this invasive surgery , and I am not allowed to take NSAID’s so they said that they might just maybe be able to get my Tylenol with codeine but only a couple of them which seems like it would be horrible if your cutting my calf to cut a tendon to lengthen it so that it relieves the tightness and stops my foot from curling and would be my third foot surgery on the same foot ? I don’t process pain well and I have had genetic testing and that pain medicine that I am only getting a few of is a medicine that doesn’t work for pain for me. It has been 4 years since the last foot surgery so it’s not as if I’m a seeker of pain medicine so it has to be that my provider is getting some benefit from my pain. I am in Missouri and I can’t and know won’t have this surgery. I will be unemployed now as I did have to resign ( my choice ) but I could not handle the pain. I have worked since I was 15 and I am considered an expert in my field but now I have just given up. I am 54 years old.

Bonnie - Chronic Pain, denied pain meds

Currently need total knee replacement surgery, Achilles surgery, shoulder surgery, have spondylosis, fibromyalgia, may even have MS , plus tons of back problems. No Dr. Will or is helping my pain.. it's really bad some days just lay in bed. I don't want to even think about how much worse it can get .. I'm already at a level 10 on a pain scale. What can I do

Michael - Chronic Pain, denied pain meds

 I was seeing a doctor for my neuropathy and that one doctor sent me how to five different doctors and each one of them put it off on the next one to write me a prescription for medicine. The thing is I wasn't even asking for an opiate or narcotic I was asking for gabapentin. When I finally got to the last one when I just was finally tired of all the crap I'm just straight up I told her exactly what I want it I need it. I told her I can't keep doing this I'm in terrible pain I can't walk can't do anything anymore can you please write me gabapentin it's not a narcotic and it helps me so much please help me. And she actually recommended for me to take Tylenol and ibuprofen together knowing I have cirrhosis of the liver. I thought about it later on she thought I was a DEA agent since I said the word narcotic. 

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