Thread by @purplemamabear

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/