1- I remember way back when advocacy for pain pts started merging with the addiction community's advocacy.
Pushed back on ADX community's mantra of opioid 'over prescribing' & stated that drugs don't cause ADX.
Maia Szalavitz chastised me, told me to basically stay in my lane.
2- In fact, many in the 'upper echelon' of advocacy still embrace the #PainParole status quo & the 'over prescribing' narrative.
Usually if one pushes back, we're blocked or put on the blacklist of CPPs, and now there's even a blacklist for 'rogue' addiction advocates. 🤔🤫
3-You see I was here advocating since the time when the first seeds were being planted on Twitter re: our E-advocacy. #ShareOurPain was a small ragtag group of CPPs who banned together for the cause. This was before there even was an 'upper echelon'.
4-I was even one of the few who suggested that allying with the addiction community might be to our advantage in achieving needed change. As the false narrative around addiction HAD to be confronted if we were to make any progress. Many CPPs hated on me for even suggesting it.
5-Didn't seem to matter to many that not only had I suffered with #Chronicpain for decades, I had a career in the medical field, & my daughter & loved ones struggled w/alcohol & drug addiction.
I came to the table w/a lot of knowledge, lived experience, perspective, & insight.
6-I remember introducing several people in the pain community on Twitter & promoting their respective work. Many in our little group were hesitant, I guess presciently, as those same people are now rubbing elbows with the upper echelon, looking down on the rest of us. 😔
7-Not sure of my role in advocacy anymore I've tried so hard to fight for EVERYONE. To put a stop to harmful policies, narratives, practices. To unite CPPs and even help the ADX community as it's the #DRUGWAR that's killing us both; despite different tx needs.
8-I feel lost, unsupported by those sitting at the 'adult table', admonished that truth is not allowed there.
Feeling broken beyond healing after the loss of my daughter, w/little hope remaining when it's obvious CDC/PROPs agenda is killing people yet few changes
are coming
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This is a cry for help!
Not because I’m considering suicide.
This is a cry for help for millions in pain. It’s a cry for those who are taking their own lives to end the agony they've been told that they just need to learn to accept.
#PainCareCrisis
2-It’s a rallying cry for people to start talking about what’s happening, what has been happening for years now, to people with serious illnesses & injuries in this country. Virtually no one is talking about this in the public forum-This is the other side of the ‘opioid crisis’.
3-There are people right now watching the news, rightfully outraged when they see profiling and discrimination, human rights abuses, violations of civil liberties and civil rights.
1-BEER
Imagine: Beer poisoning kills a few thousand.
Gov declares beer to be highly addictive & dangerous. They implement gov database monitoring of sales & restricting access to beer, you are monitored through your DL. DEA put restrictions on sales & commercial production...
2-There is evidence that deaths are not the beer from the store that's killing most people, although alcohol related deaths do include store bought beer. Some studies say deaths are from a new strong smuggled beer, and beer being made in garages.
3-Since it's difficult to discern which beer is killing people, the government lumps all beer under the 'highly addictive and dangerous' label, and declares that in order to save lives, we need to get people to stop drinking beer, and all alcohol for that matter.
The Pain Care Crisis: A Call for Compassionate Policy
The majority of people who rely on RX opiate medicines for chronic pain are being unfairly penalized and harmed due to policies aimed at 'misuse'.
Thread...1/
#PainCareCrisis
2-Deadly policies-touted as well-intentioned-have led to unintended consequences across the board, leaving millions of chronic pain patients struggling to access the medications they desperately need.
3-Personal responsibility plays a crucial role in in the safe use of medications. Patients should be empowered with informed consent, understanding risks and benefits of treatment options, rather than subjected to restrictive, gatekeeping measures.
1-Thread about the barriers to care for people in pain and what needs to change.
I. Addressing Chilling Effect
End Morphine Milligram Equivalent (MME)
Prescribing must reflect individualized patient need, considering benefits/risks for each patient.
#PainCareCrisis
2-Regulation of Prescription Drug Monitoring Programs (PDMPs):
Define clear & limited circumstances under which law enforcement can access PDMP data.
Protect healthcare providers from unjust prosecution based on PDMP data and require warrants for any LE investigation.
3-Rescind CDC Opioid Guidelines: Transfer oversight and guideline development to a specialized body of pain management and chronic pain experts, separate from the CDC and focus solely on medical health issues and pain management.
Thread: Denying opiate medications to individuals who genuinely need them for pain management can lead to many serious health issues and so much more...
#PainCareCrisis #TheOutlawAdvocate
2-Increased Pain and Suffering:
The most immediate effect is an increase in pain, which can severely degrade the quality of life, making daily activities unbearable or impossible.
3-Mental Health Deterioration:
Chronic pain can significantly contribute to or exacerbate conditions like depression, anxiety, and suicidal ideation. The psychological toll of unrelieved pain can be profound.
Kolodny laid out a detailed plan in how to reduce opioid Rxing in a meeting in NY, before guideline was even published.
@jmkillingnyc has so much information on how insidious this anti-opioid agenda was from inception in early/mid 2000s and even earlier I believe.
#PainCareCrisis
2-In order to fight back against draconian prescribing protocols, we need to understand how we got here & what's preventing change.
Changes in Standard of Care requires MDs to stay withing the bounds of restrictions.
Law enforcement in medicine has created a chilling effect.
3-With changes re: opioid Standard of Care, if MDs stray, Medical Boards can target them, DEA can charge them, jailing at worse, destroying their reputation and financial standing at the very least. Pts claiming harm by opioids have increased ability to sue for malpractice.