I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
my kids future, for #pediatric #patients w #pancreatitis or #sicklecell or other #painful conditions. They have been impacted by the guidelines even though this #population was not a focus. The #trauma of children due to unaddressed #pain is life long. No, our #voices have 4/
not been heard. Listening to all the funding going into efforts to address SUD & all the efforts but I see NO hurried efforts or funding allocated to those harmed by #CDC guidelines nor efforts to intervene. While many of those who provided public comment were #patients 5/
or #caregivers i absolutely see it as #optics. Just like the #stakeholder interviews were #optics. Harm will continue & that harm will be a the feet of the #patients & #caregivers. Where is the strategies to ‘educate’ #insurance companies that #CDC guidelines should not be 6/
used as policy? Where is the education to @CMSGov that implementation of a measure of ‘decreasing opioid prescriptions’ demonstrates nothing but that. It does not reflect the outcomes of those removed from #opioids or not provided #opioids. @CMSGov is not the only entity that 7/
has implemented these ineffective & flawed measures. A little over a month ago at our state #Medicaid meeting this measure was shared as well as the ‘progress’. I verbalized my concerns as always. The decrease in opioids does not illustrate the impact on #patient. Is that not 8/
what #healthcare should be about? The outcome of #patient. If @CDCInjury @CDCDirector @CMSGov @DEAHQ looked at the lives behind this they’d see deaths from #suicide, they’d see decrease in #QoL, they’d see loss of employment, decreased functioning, death due to u -treated 9/
impact on #patients health. But, this information seems not to matter. Again, @CDCDirector assurances mean little to me. I see no action attempting to remedy the harm, I see #RogerChou sitting on #CDCOWG & lead author although he has huge conflicts of interest. I see 10/
@supportprop and others given valuable time for comment when they have had ample influence on the guidelines but when #patients & #caregivers have only this as their form. #Individualized care for #patients w #pain has been eliminated because of the #CDC guidelines. 11/
The focus of many such as @supportprop #Chou #Lembke @DEAHQ @CMSGov @CDCInjury has been to eliminate #opioids. You know what, my kids would stop #opioids in a minute if there was any other option that addressed their pain as effectively. There is not. In 2015 at the IPRCC 12/
meeting I heard all the ‘wonderful’ options proposed by #CDC & #HHS such as self paced ‘self management’ courses 🤦🏻‍♀️. Most people with #chronicpain that are #prescribe #opioids utilize multiple strategies. The absolute ignorance by many that this has and is not being done 13/
is baffling. IF our #voices were heard I think 🤔 I should have gotten an email or call. We should have been aware of the process, the discussions, the authors. Again the #CDC lacked transparency. I do want to do a shout out to @speakingabtpain and @BethDarnall bc I believe 14/
that all recommendations that focused on balanced, individualized, patient centered care came from their voices. I trust both of them & am appreciative of their #voices. I believe their focus was/is on those with #pain & the harms they have & are experiencing. I am thankful 15/
for the many voices raised today with concerns of the harms of guidelines but I am sorely disappointed in the @CDCDirector @CDCInjury & the continued actions I find questionable if not #unethical. These guidelines were rushed in & multiple actions taken & billions 16/
spent to reduce #opioid overdoses & deaths. The overdoses & deaths have continued to increase. Additionally so many with #chronicpain harmed. @CDCDirector @CDCInjury @POTUS @VP @NIDAnews @NIHPainResearch @NIH @DEAHQ when a strategy is implanted, and does NOT meet the 17/
identified goals and in fact the issue becomes worse and great ‘collateral damage’ is done, when is the plan scrapped? When is there recognition that it is the ‘wrong’ path? I have to say as a measly state employee, if I implanted something as infective & harmful as #CDC 18/
guidelines the strategy would be scrapped, I’d most likely be fired. I am so angry at the #Inequity. So angry that those NOT impacted are given such access and authority. I have no less concern after todays meeting for the future of my kids. I remain fearful. 19/

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More from @purplemamabear

16 Jul
I want to again express my concern to my senators @SenJohnHoeven and @kevincramer about the lack of transparency by the @CDCDirector @CDCInjury in the revising of the #OpioidGuidelines. Great harm has been done to those w #chronicpain in our state. @SanfordHealth 1/
cut all #patients off of #opioids at once due to what administration stated was because of ‘national standard’ (#CDC Guidelines). So many harmed. How are actions like this ok? Three weeks prior to my son being removed from #opioid #pain medications we had met with his 2/
#pain physician & had a long talk about #opioid #pain #medications being best option for him. Removing individuals w #chronicpain from #opioid pain medication was not a decision based on individual care of #patients BUT @SanfordHealth taking care of own needs. Multiple 3/
Read 12 tweets
13 Jul
Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/
definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/
around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/
Read 14 tweets
11 Jul
I can’t remember who said this, so I apologize, but the app -lication of #healthcare is not the answer to magically transforming the system. So many applications, portals, surveys…. They can assist but first a true cultural shift must be made in #healthcare. For this to be 1/
those working in system need to be supported. Currently our #healthcare system lays the burdens of the broken system at feet of #patients, #caregivers & healthcare professionals. So much must change. It must not be a system based on vulturism (I know not a word) of entities 2/
focused on making millions of dollars of the backs of those who are vulnerable. We have allowed this, we must change this. One persons voice I appreciate is @RepKatiePorter but others must understand the harm occurring. Our system is not functional. For some reason those 3/
Read 4 tweets
8 Jul
I posted this yesterday with parents permission. I wanted to expand on this video a bit.

1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/
Yet, when I share experiences of #caregivers & or #patients (who had given me permission to share) those experiences were/are often questioned or I’ve been excused of exaggerating. Or like many others called a #shill for #Pharmaceutical companies. I am a mother, who 2/
witnessed first hand the harms of pain ignored, not treated, under treated or labeled as #psychosomatic. I remember very vividly how my kids would arch their backs in pain & scream. How helpless I felt. I have seen the repercussions of this #harm & am absolutely obsessed 3/
Read 15 tweets
7 Jul
I wanted to share some comments by #parents whose children have #pancreatitis. As I have shared before, the #pain care for these kids is NOT adequate. Their #pain is often not being addressed. I have asked parents to start writing up their stories to share. When #pain is not 1/
addressed it causes trauma, not only for the child/youth but parents. We know unaddressed #pain can lead to #chronicpain. I absolutely believe in #biopyschosocial approach but what we are seeing is a #psychosocial approach being utilized and #bio aspect missing. This leaves 2/
#parents and #patients feeling angry & abandoned. One of the reasons I started getting involved in #advocacy is that my kids #pain was dismissed, they were labeled. This leads to #trauma, #chronicpain & distrust of #physician. What HCP need to understand is that when this is 3/
Read 7 tweets
8 May
#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
Read 21 tweets

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