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Arianne Profile picture
@ravensspirit68
Sep 21, 2021 • 9 tweets • 3 min read • Read on X
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Almost three years ago, this was sent.
Among many more I'll include in this thread, along with form letter responses.
Our Representatives KNOW what is happening to us.
They have known all along.
#NoneOfThisIsOK
#SavingUsToDeath
#ScreamLouder
2-Written Dec, 2018...😔
3- 2018 Regulations comment submission...
4- A few samples of form letter responses over the years...🧐
5-😔🧐
6-This form letter response wasn't even on topic by our Vice President's former office. My letter about the plight of pain patients merely mentioned that animals were being treated better than human beings for the most part. 🤔🧐
7-😔
8-Anyway, there are many, many more. But I think you get the picture. 🧐
9-To all who like to hate on me-
Accuse me of being 'unhinged', 'ragey', a 'bitch'...
Who tell other pain pts that if they follow me they won't be allowed in their circle.
I've done my share & then some.
I promoted most of YOUR groups, participated in protests, & much MORE. 😔

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More from @ravensspirit68

Arianne Profile picture
Jan 27
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 Image
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. Image
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.
Read 6 tweets
Arianne Profile picture
Jan 6
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 Image
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.
Read 9 tweets
Arianne Profile picture
Dec 27, 2024
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 Image
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.
Read 12 tweets
Arianne Profile picture
Nov 17, 2024
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.
Read 8 tweets
Arianne Profile picture
Nov 13, 2024
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.
Read 10 tweets
Arianne Profile picture
Jun 21, 2024
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 Image
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. Image
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.
Read 6 tweets

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