Discover and read the best of Twitter Threads about #Patients

Most recents (24)

🔥A must-read: ⁦@oncologyCOA⁩ report on #PBMs

Some takeaways:

“…PBMs make up an oligopoly of rich, vertically integrated conglomerates that routinely prey on health care practices, providers, and their patients.”
2/ “PBMs have done this by overwhelmingly abusing their responsibility to protect Americans from this country’s drug pricing crisis, instead exploiting the opacity throughout the nation’s drug supply chain to enrich themselves.”
3/ “[The report] explores how the recent levels of consolidation among PBMs and health insurers is adversely impacting #cancer care, fueling drug costs, all while allowing for massive profits for #PBMs and health insurance companies.”
Read 6 tweets
After years of my daughter receiving care at our local #hospital that is often based on #bias & is often subpar I have begun to reach out to different state agencies. The experiences that my daughter has had to experience over the last several years has been surreal 1/
I’ve attempted many times to engage with #patientservices w various staff in attempts to implement a plan which is based on her needs, recognizes the #medicaltrauma she has experienced & how it impacts her. I’ve attempted to explain how her diabetes works (to the extent I even 2
understand. Type 3 is brittle, it can shoot up or down for numerous reasons. I’ve tried to explain her complications based on her #AITTP but instead assumptions have been made and that what care has been based on. In reviewing her chart it’s truly horrifying their utter lack 3
Read 25 tweets
#MedicalBiases #CompromisedCare #DenialofRights
This ⬇️
many may not believe this. They may find it unbelievable. I don’t. I have watched my daughter deal with the exact same abuses bc she is prescribed #opioids, bc she also has complex #medical conditions & PTSD. 1
I never know when she has a medical crisis and needs the hospital IF she will need to interact w a personnel or professional whose #biases interfere with care. These incidences can be shaming, demeaning or they can put her life at risk. My daughter has had hypoglycemic crises 2/
at @SanfordHealth where the nurses refused to check her #bloodsugars because ‘it is anxiety’ or ‘she just ate’. Even when I intervened over phone & pleaded, nurses refused to point I had to reach out to #housesupervisor. While I’ve reached out multiple times to @SanfordHealth 3/
Read 11 tweets
Thread 🧵: Reflections of a Parent/Caregiver After Six Years Implementation of CDC Guidelines (warning long but I am very interested in feedback)

Since babies, my kids, have intimately known #pain. At one time their #pain was intermittent & #acute. Sadly, they now struggle 1/
#chronicpain & are young adults. Our kids 1st 13/16 years of life, our family had a #safetynet, their #pediatrician. He was highly intelligent, compassionate, he challenged the system & in the most authentic sense #partnered with families. #Pain was not a major concern when 2/
the kids were under his care. The nature of their disease often brought us to the ER & hospitalizations. The hospitalizations resulted due to inability to manage #pain, dehydration, & other issues caused by a flare in their #disease. My husband & I attempted to minimize the 3/
Read 45 tweets
1/ Bill, l #Australia is NOT "the answer" to the next #pandemic if all countries responded the same

#disease, #poverty, #child dev dont go on vacation for a #pandemic. All of these will always lead to > death than the pandemic if Australian measures are enacted

We'll explain...
2/

1) #UNICEF has >500M in severe poverty due to measures advocated by you and #Australia and NZ. 1:10 will die from severe poverty

Conservatively, that is > 10M deaths. & If all had done that millions more would die for just poverty

And #children die the most from poverty
3/
2) 15M #cancer #patients need #Treatments. Over 50% aren't compliant & new diagnoses are down ~70%

Combined, we have ensured from #COVID19 measures the deaths of 5-10M cancer patients, conservatively

Those #s increase with a global #Australian / NZ response
Read 6 tweets
Today @GeneticAll_UK is launching a new report, ‘Good Diagnosis:Improving the experiences of #diagnosis for people living with rare conditions’.

Read the full report geneticalliance.org.uk/gauk-news/news…
#GeneticAllianceUK
#RareDiseaseDay2022
#RareDiseaseDay
Over a third of people living with a #RareCondition
will wait for more than five years to obtain a
definitive #diagnosis, often receiving a number of
#misdiagnoses along the way

#RareDiseaseDay2022
#RareDiseaseDay
The ‘diagnostic odyssey’ is a term used to describe the time taken between a patient first developing #symptoms and receiving a correct #MedicalDiagnosis. This can be a long and eventful journey.

#RareDiseaseDay2022
#RareDiseaseDay
Read 53 tweets
@ibdgirl76 What I really struggle w & it’s not just re the lack of care for those in pain & stigma they face, overall the system & many (not all) inds wi not set up to address issuers #patients & #caregivers have re care. There is literally no place to go. Yes, there are 1/
@ibdgirl76 #patient representatives but they are there essentially to watch out for health facility. File a concern & most times you are not part of the process, nor do you know the outcome. There literally is a lack of protection for #patients. Maybe some clinics or healthcare 2/
@ibdgirl76 facilities better than others but often #patients are left w no #voice. I understand, but in NO way condone aggression, physical harm, threats or name calling to #medicalpersonnel. They deserve a safe place to work, yet I understand the rise of these incidences 3/
Read 6 tweets
#AIMART storytime 🧵
This just in: Boom💥
So, I’m getting ready for work today, tying up the ol’ scrubs and peek at my phone - I see a message, sent last night from the ER doc stating that one of my patients, a young Black man admitted for Sickle cell pain crisis...

1/
..., wanted to leave and the doc was okay with discharging because the patient’s pain seemed to have resolved. Ok, I get to the 🏥and my team informs me the patient is still in-house (in the ED – No beds on the floors.

2/
The ED is overflowing, so we have patients admitted and waiting in the ED for a bed for daaaays on end. Coupled with the ED being short-staffed - yeah…not good) and didn’t leave, after my wonderful senior resident convinced him to stay and receive more analgesia (pain meds)

3/
Read 24 tweets
⚖️ LEGAL LOOKOUT 1: We’ve read with interest the amicus brief below filed by 24 health policy experts in the @texmed v. @HHSGov lawsuit, as we filed one, too.

Without any further digging, though, we can see off the bat that a majority of the so-called experts who signed

(1/8) ImageImageImage
onto this brief are funded by the #insurance industry.

We respect and cherish the fact that everyone party to a significant #policy debate like this one over #regulatory implementation of the #NoSurprisesAct has a voice.

But, a question to @RonaldKlain, @SecBecerra, and

(2/8)
@BrooksLaSureCMS: How can you reconcile the fact that the administration’s #regulations rely on these bankrolled academics and experts while also claiming that these regulations help #patients and our #healthcare system? This is an alternative reality.

(3/8)
Read 19 tweets
What’s the deal w/ people in #pain using #opioids? (Read entire thread.) We are not “drug addicts.” We are physically DEPENDENT on our meds, which we need to function w/out pain (i.e, to function). Physical dependence occurs on heart meds & #antidepressants too. #ThisIsUs
And I am not trying to stigmatize #addiction here. But rly, let’s talk; chronic pain patients (#CPPs) have been forced to KILL themselves due to untreated pain, due to bad #policy, due to the #stigma, foolishness & financial incentives of others. This has a name: opiophobia…
If you took me off ALL opioids, I (like most #painpatients) would go through ugly opioid #withdrawals (and make sure to poop/puke on YOU for causing them)! 😂

And even after months of “abstaining,” and withdrawals disappearing, I would be “clean” in the eyes of the world, but…
Read 10 tweets
1/ Excited to share how T cell therapies kill #leukemia!! multi-omics + new #computational #singlecell tools for longitudinal analysis 👉unexpected answer! cell.com/cell-reports/f…

*👏* @elhamazizi! 🙏 @dpeer Cathy Wu @MDAndersonNews @CPRITTexas @ColumbiaBME @sloan_kettering
2/ We studied donor lymphocyte infusion (DLI) - an #Immunotherapy for relapsed #leukemia after #BMT & the #og of #celltherapy. Previously, we showed DLI reversed T cell exhaustion - but didn't know why/how/which T cells were responsible...
ashpublications.org/blood/article/…
3/ To address these ?'s, we modeled intraleukemic T cell dynamics by integrating longitudinal, multimodal data from ~100K T cells (!) during response (R) or resistance (NR: nonresponder) to DLI.
Read 18 tweets
1/ New paper out w/ @bnrome @Beatrice__Brown @akesselheim @PORTAL_Research examines how top-performing hospitals mark up prices on clinician-administered drugs.

🧵 below.

jamanetwork.com/journals/jamai…
2/ As of January 1, 2021, hospitals must now post payer-specific prices for all goods and services, including clinician administered drugs.

nejm.org/doi/full/10.10…
3/ Early compliance with the rule has been sluggish. See great work from @suhas_gondi @AdamLBeckman @averyofoje @JMichaelMcW

jamanetwork.com/journals/jamai…
Read 30 tweets
Dear @OptumRx & @SanfordHealth you are NOT his #physician. You know nothing of his #health hx. Two years ago #Sanford #Bismarck #pain clinic pulled all #patients off #opioid #pain medications. This was not #patientcentered care, but care deemed appropriate BY administrators 1
Now @OptumRx & @SanfordHealth #insurance sending out letters re #opioid #pain #medications. My son had to move from a #Sanford clinic to another clinic due to #abandonment. Yep, abandonment. Plain & simple what you did was harmful & not based on #patients needs. You need 2
to look at research, that shows the harms of what u r doing. @SanfordHealth administration in Bismarck informed me 2 years ago when all #patients pulled off #opioids that it was the ‘national standard’ of care established by @CDCInjury @CDCDirector. The guidelines are NOT 3/
Read 9 tweets
I know that there are #patient advocates that take issue with @BethDarnall work but I find it critical. I know many individuals in my community that have wanted to decrease their opioids or get off all together for various reasons. Listening to their stories are frightening. 1/
What I don’t condone, is #physicians & #antiopioid proponents utilizing work done such as @BethDarnall or other psychologist that work in the area of #pain to be dismissive of those with #acute or #chronicpain. Sadly, this occurs all too often and has caused a distrust by 2/
those with #acute or #chronic pain. I believe that we need a wide variety of options. I believe that care should be individualized. That this is often not occurring is NOT the fault of those working to provide options. Those in the field that dismiss patients by saying #pain 3/
Read 5 tweets
Warning ⚠️ ⚠️ I AM snarky. I get that we have an individual responsibility for our health. I get that but articles & comments as below definitely get my snark up. My kids have T3 #diabetes which is unbelievably difficult to control & truly cannot be controlled with #diet. 1/ ImageImage
furthermore inds present differently with T1 & T2. My nephew’s bs actually skyrocketed when playing basketball - a sport he loved and was good at. #Diabetes is hard to manage & costly. Furthermore there has been research highlighting harms of a restrictive diet particularly on 2/
children/youth. Articles such as this & statements such as this seems very flippant and NOT #patientcentric at ALL. We also have a greedy #pharmaceutical industry that needs to be held in check & they are NOT. There is no reason why the cost of #insulin has #skyrocketed. 3/
Read 5 tweets
#PathologizingPain
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/
psychological strategies be touted as solutions for both #chronicpain & #acutepain. This has been fostered by the #CDC guidelines as well as various independent groups. As an individual who works in the area of mental health I am alarmed at the amount of #gaslighting that 2/
to those with #chronicpain & the belief by many physicians & professionals that psychological strategies will alleviate #chronicpain as a stand-alone strategy. I DO believe that psychological strategies CAN be of benefit addressing pain, but, how #pain is being #pathologized 3/
Read 11 tweets
"#Data: a new direction" - a public consultation by @DCMS on "reforms to the UK’s #DataProtection regime":

gov.uk/government/con…

The consultation ends on 19 Nov 2021, and you can respond by e-mail to DataReformConsultation@dcms.gov.uk or online here:

dcms.eu.qualtrics.com/jfe/form/SV_4P… Image
A quick sample of initial reactions...

We're clearly going to be hearing a lot about #LegitimateInterests, as well as #commercial and #public ones. The real question being, how do this Government's interests actually align with YOURS?

140+ pages on a Friday is a lot to digest, but @lilianedwards' "penumbra of often futile determinedly populist ideas largely not evidence-based" seems entirely consistent with @DCMS's Drunkard's Walk through #data and #ID this past year...

Read 28 tweets
#location location location: thrilled to share our work @CellCellPress! #interferons dictate #COVID19 severity! Specific #IFNs are produced along the #airways in response to #SARSCoV2 and drive protective or detrimental #transcriptional programs! 1/7 doi.org/10.1016/j.cell…
IFNs are driven by high #viral #loads, suggesting that viral recognition is only achieved when #SARSCoV2 reaches a certain threshold! Efficient induction of protective IFNs is preferentially achieved by younger patients, further explaining susceptibility of elders to #COVID19 2/7
#IFNL1 & #IFNL3 characterize mild illness & drive potent anti-#SARSCoV2 #ISGs in the upper #airways. Severe patients show #typeI IFN & #IFNL2 along the respiratory tract but lack ISGs, dampen cell proliferation programs associated to #repair and boost #apoptotic #p53 pathways 3/7
Read 7 tweets
#WeekendLecture
Stroke outcome #prognostication

☝️#Stroke clinicians are routinely asked by patients and families regarding prognosis.
🧠The cognitive process underlying prognostication is #complex, poorly understood, and sometime #biased by personal experiences Image
#WeekendLecture
#StrokePrognostication

#Fact: Clinicians, even those with expertise in stroke, perform poorly in predicting clinical outcomes
In this case-based study, overall accuracy for predicting death or disability at discharge was <20%😩
#JURaSSIC
n.neurology.org/content/81/5/4… Image
#WeekendLecture
#StrokePrognostication

☝️Several prognostic #models have been developed to aid prognostication after ischemic stroke
These models #outperform clinician #judgment in predicting stroke outcomes
ie:
onlinelibrary.wiley.com/doi/10.1111/en…
@GeorgeNtaios Image
Read 12 tweets
We issued the following statement this a.m. on the @UHC-@zackcooperYale-@Yale #surprisemedicalbill "research" scandal.

Read here ➡️ conta.cc/3lZWcjP

To ensure that forthcoming #NoSurprisesAct regs are implemented fairly and to protect #patients nationwide, we will...
...continue to shine a bright light on this trickery.

According to our President Christopher Sheeron, "We have long believed that this #Yale study, and several others that have shaped this debate over the past several years, was blatantly concocted out of the public eye by...
...insurers. Rose Adams' unveiling of this nasty truth is welcomed enthusiastically by #patients, #hospitals, #physicians, and many others who are sick of the #health #insurance industry's dirty tricks.

"As regulators at #HHS, #CMS, and other federal agencies continue...
Read 17 tweets
⚠️ GROSS COI REVEALED: In an extraordinary and fantastically written investigative report, @theintercept's @rose_n_adams unveils how @UHC co-opted @zackcooperYale's #surprisemedicalbill study, all while #Congress embraced it as "academic" and "unbiased" work to write #SMB law.
1⃣ This lays bare how #UnitedHealth has manipulated #surprisebill "research" to enrich itself at the expense of all #patients and the frontline #medical providers risking their lives over the past few years of #Covid.

2⃣ The study was foundational in the #SMB debate, and...
...Congress was duped. We believe that Congressional #investigations are now warranted by the #House and #Senate #Judiciary Committees. @HouseJudiciary @JudiciaryDems

3⃣ This work from Prof. #Cooper and his @Yale team was cited *10 TIMES* in the first #regulation issued by...
Read 19 tweets
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/
Read 19 tweets
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

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