As @life_is_art___ has pointed out, the #ARHQ & #KaiserHealth (plus others!) are studying patients without clear consent. The #CommonRule was changed in the CURES Act. It allows for something called #AlternativeConsent.

It's easier for researchers! 🤔
rethinkingclinicaltrials.org/chapters/desig…
Just a few screenshots from the description of #AlternativeConsent:
You can obtain consent from patients WITHOUT THEIR DIRECT KNOWLEDGE if the study is deemed
*minimal risk* to the patient.
Who determines such a thing?

No doubt, #ForcibleTapers were done w/#AlternativeConsent.
You'll find that in re: #AlternativeConsent, there's great discussion about preventing patient bias in trials.

They are allowed to dodge consent to avoid that *bias*. This cannot be #ethical. @process_x was right when she warned us about the changes made to the #CommonRule.

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More from @LelenaPeacock

15 May
Today I wish to honor @kathleenaie.
She was a Wife
A Mother
A Dear Friend, &
A Fierce Advocate for #PainPatients.

Kathleen passed away suddenly. She was & will always remain a force for good. She fought tirelessly for others.

We will miss her SO much. Thank you, Kathleen!🌸💚
She was ever-present & vocal about the issues #PainPatients face in medicine today.

Her mission in life was to help others in any way she could.

I believe her poor little body couldn't keep up with her heart & her passionate pursuit of restoring rights & medication for #CPP.
I admired her tremendously. I'm disappointed in myself, because I always meant to tell her how much I looked up to her.

I'm grateful I had the opportunity to know her, if only though our advocacy & shared passion for others.

I can only hope to be more like Kathleen. 🙏🌸💚
Read 4 tweets
18 Apr
We need change NOW. How is it that at no point during the encounters with this poor woman NO ONE seemed to notice she had mental deficits? A visit from APS would be more appropriate. This woman was terrorized by the police, not *policed*. #PoliceBrutality
nbcnews.com/news/us-news/c…
This is indefensible.

Miss Garner is 73.
She has dementia & aphasia.
She was failed at every turn.
Walmart employees wouldn't let her pay for the items she *stole*.
The cops used UNNECESSARY FORCE w/someone who couldn't comprehend them. How did everyone miss her #dementia?🤔💔
Would this woman still be alive if she was a BiPOC?

SERIOUS QUESTION.😔

As it stands, she suffered a broken humerus & a dislocated shoulder.
The @LovelandPolice unnecessarily escalated this situation. It should have been obvious she was terrifed & not quite *all there*.😢😢😢
Read 4 tweets
17 Apr
Well folks...this is making the rounds thanks to the eagle eyes of @yahoocyd! (Thanks, Cyd!)

You read that right. 12 Steps For The Chronic Pain Patient.

Naturally, I have a few thoughts...

My initial reaction was disbelief, then utter dismay. Really?😔
chronicpainanonymous.org
Firstly...
The whole thing smacks of the pulpit, but let's dig in, shall we?

We are powerless over pain. Uhm...NO. Not at all.
That's what medicine, treatments, & coping mechanisms are for. Helping manage pain to a more tolerable level so one can be more productive & joyful.🤔🤷‍♀️
The second part of Step 2 begs a response as well.
"We admit that illness/pain makes our lives unmanageable."
No, I don't admit this at all. People living with #disabilities are creative & careful in how we manage our lives. This sounds like learned hopelessness AND helplessness.
Read 8 tweets
18 Mar 20
Dr. Kertesz addresses the doctors who believe no one should be started on #opioids in this tweet. I'd like to chime in as well.

I believe it should be a carefully thought out decision between doctor & patient. I'm a patient that benefits from #LongTermOpioidTherapy. A few notes:
I finally got a diagnosis that isn't half-assed. I have #EhlersDanlosSyndrome, among other things. It's extremely painful. It started to set in during college. I should have know that wearing a backpack shouldn't have been excruciating. It was. I didn't go on an #opioid regimen
for years, however.

I finally tried #opioids long-term around the age of 28. I was working as a freelance photographer. Hauling equipment around became so painful, I hit a WALL around the age of 30. I had to slow down, whether I liked it or not. I got married, & after that, my
Read 10 tweets
30 Jan 20
I have a grievance regarding my mom's care during her bout w/#sepsis. #dementia

At the end of October 2019, my husband & I awoke to find mom's breathing labored, & her mumbling to let her sleep. We let her rest. A fever spiked within the hour, & suddenly she became deathly ill.
She was twitching, sweating profusely, in full rigors, & unable to sit up/speak well. She looked TERRIFIED. I thought she had a stroke. Turns out, it was a high fever from an infected gallbladder. She landed in the #ICU. ALL her vitals were jumping around. It was horrible.
She landed in the ER & eventually the ICU. Turns out she had #sepsis from the infected gall bladder. The ICU's 1st step? Changing her meds around INSTANTLY. Specifically they rescinded ALL #opioids abruptly. After over a decade on them, she was thrown into acute withdrawal in ICU
Read 16 tweets
3 Oct 19
My name is Dawn Anderson, & today I should be celebrating my 54th brithday.

I was a grandmother, mother, aunt, & dear friend.

I was also a #ChronicPain patient.

I used #opioid medication to maintain a decent #QualityOfLife.

I was forcibly tapered from my pain meds in 2016.
I found other patients who were suffering because of the #WarOnDrugs, & I cried out for help.

I shared my story with journalists.

I wrote my PCP a letter.

I attended a #DPPRally with my daughter @AmandaLatronica. I'm so proud of her. She's a #warrior!

painnewsnetwork.org/stories/2019/3…
In March 2019, my kidneys failed me, & I ended up at the hospital.

I was strapped to a hospital bed & injected with thorazine because I was confused.

The pain was horrific & STILL-no one listened. #PainStigma

I decided to let go on March 11, 2019.

I refused dialysis, & died.
Read 6 tweets

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