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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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.
Thread...1-Prescribing practices should never have gotten to the point where some of the most vulnerable people in our society-the sick/injured/elderly-are left in agony, driven to the point of desperation with little to no hope in sight of things changing.
#PainCareCrisis
2-People with serious illnesses and injuries have been being told every year for over a decade to 'hold on', that change is coming. I know from having boots on the ground in the chronic illness community that for most, things have only gotten worse.
#PainCareCrisis
3-Right after CDC/PROP's unrolling of the 'opioid guideline', I and others watched medical professionals convene boards to change the Standard of Care in managing pain in EVERY aspect of medical care, with an anti-opioid, 'dangerous drug', directive driving those changes.
1-What I've noticed over 14 years of advocating for people in pain is when you make it clear you're not anti-opioid, MDs, legislators, media, and GOV officials become rude then dismiss you. If you still don't go away, they'll then attack your character/ignore you.
#PainCareCrisis
2-Even when presenting facts-like the extremely low incidence of 'addiction by prescription'.
Or if we explain the safety/efficacy of opiate medicines when taken as prescribed, or the real dangers of leaving someone without effective pain control, including death- we are ignored.
3-More often than not, a pain patient advocating for themselves is automatically judged as ignorant and having no credibility. We are usually labeled as people 'just wanting THOSE drugs', called junkies or pharma shills, or bots.
Thread-There's probably more to unpack here than X or my current flare will allow me to elaborate on.
From deflection to gaslighting and than on to dismissal of anything we #chronicpatients or even professionals say.
#ChronicPain #PainCareCrisis @DEAHQ federalregister.gov/documents/2024…
2-Section 306 of the Controlled Substances Act (CSA) (21 U.S.C. 826) requires the Attorney General to establish aggregate production quotas for each basic class of controlled substance in schedule I and II...
Maybe next letter writing campaign to the U.S. A.G?
#PainCareCrisis
3-DEA received 4,699 comments from people with chronic pain, patients (ADHD), pain advocacy associations, U.S. professional associations, U.S. nurses, and far more.
1-The most idiotic & insulting things those with #ChronicPain face is the implication or direct accusation that we 'just want opiates'.
The truth is, we ARE 'seeking' the meds from MDs we require for pain relief but usually ONLY AFTER trying almost everything else already.
2-When one is ill or injured they usually try the old standby's first vs before going to a doctor.
Ice, heat, OTC meds like Ibuprophen or Tylenol-Even both. Some try herbal supplements, massage, gentle exercise, diet, even acupuncture before seeking help from an MD.
#ChronicPain
3-Those w/#chronicillness have usually done their research & avoid medical offices/ER like the plague if at all possible.
From cost to gaslighting, we'd rather deal with our issues at home. But facts are, we require MDs help as THEY are the only ones who can RX meds we need.
1-Objective: SAVE LIVES.
Recently I said a #SafeSupply is the pinnacle of saving lives but I realized it's not; it's the FOUNDATION, upon which we build policies to actually save lives.
I'm going to refer to this moving forward as the GOLD STANDARD in reducing #DeathsOfDespair.
2-Drugs would be legalized. A safe, known potency supply of substances created by existing drug manufacturers. It would include supply for RX'd medicines as well as for OTC public, adult, sales and consumption. Similar to how alcohol is sold & consumed now. #SafeSupply
3-The BILLIONS UPON BILLIONS being funneled into the #DrugWar and the 'opioid crisis' would be put into improving efficacy and access to AFFORDABLE HEALTH CARE, including mental and dental health, while bridging gaps in regard to other #socialdeterminants of health.