This is the letter I wrote to the Opioid Steering Committee December 27, 2017
((((Please note I used part of a form letter and changed/added parts for my story.... There are TOO MANY of US BEING discriminated against. We should be covered under the ADA but it seems it does not matter. It is honestly out right discrimination. We all need to find our inner Rosa Parks and take back OUR SEAT!))))
To the FDA Opioid Policy Steering Committee
I am writing to add my comments to those of many other people in agony, concerning the mission of the FDA Opioid Policy Steering Committee. Because I have difficulty organizing my ideas, I have borrowed part of this from a letter published in social media. However everything written below is true to the best of my knowledge.
I have been a chronic pain patient for many years, as I was hit by a drunk driver in 1999, along with a spinal birth defect, resulting in 8 back and neck surgeries to date. I will require more as I age because my surgeries are just for stabilization and to prevent paralysis. I also have recurring lyme, lupus, RSD, as well as rheumatoid arthritis. I cannot take morphine, as it causes a drastic drop in blood pressure that nearly killed me on 3 occasions, until the anesthesia group determined the cause.
My doctors have tried me on many therapies. The only ones that have worked have included prescription opioid medications. I did not seek out these medications. I take only as much as needed to partially control my pain, and only under my doctor’s direction. I refused ALL narcotics until uncontrolled pain caused a TIA and I was sent to a pain management specialist who assured me he would follow my care and use closely and I would not become an addict. Now I sit in fear that once the regulations continue to pressure all Drs and pharmacies to the point no one will have access to these medications. Before you tell me that won't happen, I might mention that I no longer can get my medications through my local pharmacies, they are all too scared to take on any pain patients, I have to spend 100's of extra dollars on top of the cost of my medications to send to my husbands work approved mail order pharmacy and wait/pray my medications don't get lost or that they are delivered on time. Yes, I was forced to go through a week long withdrawal when my 30 day prescription that I stretched 40 days could not be filled ANYWHERE.
Because of the prevailing hostile regulatory environment, my doctor no longer feels safe in prescribing opioids to anyone, including me. He fears being maliciously persecuted by the DEA or State authorities and losing his license, thus his livelihood.
I have personally been harmed by denial of appropriate and effective opioid medications. I have never failed a urine test. I am not a “drug seeker”. I do not “want” to take opioids, even though nothing else works for me. I am a person in pain whose quality of life is being destroyed by government policy.
I have been told that because of these regulations, my specialists may have no choice but to stop prescribing opioid medications. From experience, I know that further lowering my dose level, or worse, will destroy my life and disable me from the few activities I am now able to do. I will once again become bed-ridden, rely on the use of a motorized wheelchair, cane, walker, and other aides just to perform daily activities.
The most important factor that is driving me further into disability is the 2016, 2017, and now coming 2018 CDC opioid prescription standards. Though written as voluntary and directed to general practitioners, Congress made them mandatory in December 2015 – three full months before publication. They are now widely regarded as mandatory standards by legislatures in several States.
There is widespread consensus among doctors that the CDC standards are fatally flawed: unfairly and unscientifically biased against opioid therapy, unsupported by medical evidence, inaccurate and grossly incomplete. Failure to acknowledge natural differences in opioid metabolism between individuals makes the standards actively dangerous to patient health and function. These standards must be immediately withdrawn for a major rewrite to correct their many errors. Patients or their advocates should be voting members among the writers group.
There is no one-size-fits-all pain patient, and there can be no one-size-fits-all opioid treatment standard for either dose or duration versus diagnosis. Imposing arbitrary limits on the number of pills prescribed, or allowing pharmacists to audit prescriptions will only drive more doctors out of practice and more patients into agony. It is time to remove government from doctor-patient relationships. You don’t know what you’re doing and people like me are suffering from your incompetence.
Most ironically of all, the well-intended actions of government in restricting opioid prescriptions are having exactly the opposite effects. Deaths from street heroin and fentanyl have skyrocketed even as the number of prescriptions has fallen in the past five years. Arguably, prescriptions made by doctors to real pain patients are not now and have never been a major factor in the death toll. Public policy on addiction must be redirected toward prevention in kids and harm reduction in adults. Restriction of pain relief contributes nothing to either goal.