Top Tweets for #rightToTry
This woman's life was saved by the Right to Try Act, a stark contrast to the Democratic stance on healthcare. Her survival is a powerful testament to patient choice and medical innovation. #RightToTry #Healthcare #PatientChoice
Questions arise over conflicting health claims and misinformation about the 'Right to Try' law, all while a laundry product is surprisingly promoted. A complex narrative unfolds. #HealthClaims #RightToTry #Misinformation
A patient claims Trump's 'Right to Try' law saved her life, but evidence suggests she was taking the unapproved drug off-label months *before* the law was even signed. The narrative she's pushed for 7 years appears to be inaccurate. #FactCheck #RightToTry #MedicalMyths
I have joined the Hopewell Foundation's Board as an advisor for patient access and Right to Try related matters.
The Hopewell Foundation advocates directly to advance the science of craniofacial (and particularly nasal) reconstructive medicines, with a focus on patient-specific techniques and therapies.
This is an unmet need where Right to Try pathways on both the state and federal level can play an important role, and I'm happy to bring my expertise and voice to the table to assist in this noble mission!
https://t.co/NqUebXxu5q
CNN dug up 150+ deleted tweets from Natalie Harp on January 6th and called it "zealous devotion."
Left out: she's a cancer survivor. Trump's Right to Try law saved her life. Her dad died that same year.
That's not obsession. That's gratitude.
#J6 #NatalieHarp #RightToTry
Liberty University's philosophy: every field is a mission field. Natalie Harp's experience shows this, especially when navigating cancer treatment via the Right to Try Act. #LibertyUniversity #NatalieHarp #RightToTry
Here's a simple way to DRAMATICALLY reduce drug prices and speed up new cures, with no downsides
New article by @SofieHamilton and yours truly @AFPhq
#SafeToTry #RightToTry #personaloption
https://t.co/WLpOyGJnVp
@DrNeilStone I think itโs excellent the bbc will inadvertently guide failed cancer patients to this promising cancer treatment.If you have an issue with a patient who the NHS has failed and told to go and die finding an alternative treatment that works then that does expose you. #righttotry
@gregspero @theallinpod @grok Not just good potential for skin, but for arterial damage too. Over a 6-year clinical trial phase: ~54 million people will die of arterial heart disease globally before this comes to market. @whitehouse If ever there was a candidate for #RightToTry
https://t.co/VVJ7wqjwMW
Montana's new 'Right to Try' law is a game-changer for longevity medicine. It removes federal restrictions, allowing access to experimental therapies for life-altering conditions, not just life-threatening ones. #RightToTry #Longevity #MedTech
A woman silent for 5 years spoke again hours after one psilocybin dose.
So why does Washington's psychedelic reform push leave Alzheimer's families off the list entirely?
https://t.co/RtYWi04QgB
#Alzheimers #Psilocybin #FDA #RightToTry
10/
Montanaโs approach is bold, prioritizing patient choice and faster access to early data.
For Long COVID patients feeling out of options, this represents one of the more permissive state-level pathways currently available.
#LongCOVID #RightToTry #PACVS #MECFS
๐จPLEASE OK #ANKTIVA
My Son has pancreatic cancer, my husband has
prostate cancer..
IT'S NOT RIGHT THAT MY BOB and DAVID & THOUSANDS MORE CAN'T TRY IT.. #RightToTry
CANCER Is An Insidious Horror๐น
WE MUST HAVE #ANKTIVA NOW!!
Time is NOT on our sideโผ๏ธโผ๏ธ
As a mom, I'M BEGGING You.....
PLEASE give my son & soulmate of 50 years a fighting chance....PLEASE
@CMSGov
@DrOzCMS
@SecKennedy
@RobertKennedyJr
@elonmusk
@MELANIATRUMP
@SusieWiles47
@DNIGabbard
@BasedMikeLee
@LaraLeaTrump
@realDonaldTrump
@DonaldJTrumpJr
@MAHA_Action
@delbigtree
@drdrew
@NicoleShanahan
@KatyTalento
@EricTrump
The strongest cases for #RightToTry are where severity and inescapability (with current approaches) are maximal.
The typical example is terminal cancer, where the severity (progression towards death) is maximum and the options are exhausted. This is naturally where most of the energy goes, but when breaking a hold, you usually start with your strongest case. I believe as well the chronic illness community would be next to benefit. Especially because the understanding of #LongCOVID, #PACVS, and #MECFS has not lent itself currently to a widely available effective treatment.
The steelman case for medical regulation is that it protects people from receiving dubious treatments. However, administering treatments is also how you know that something works.
To square this, they made something called a 'clinical trial', where you treat only a small number of self-selected people before you can move it up to being a more widely used treatment.
While I didn't originally mention it, another strong parallel between the case of cancer and chronic conditions is their individuality, making generalization difficult. However, this can benefit from a more broad definition of 'treatment protocol'. For personalized mRNA vaccines for cancer for example, these will differ between individuals, but the approach of tumor sequencing and sequence design (the algorithm) is the same.
For the case of chronic #IACC s, one thing that was discovered relatively early on is the significant heterogeneity in treatment response and driving mechanisms. This makes generalization from large scale clinical trials and averaging over effects difficult. For most therapeutics showing some benefit, patients can be divided as responders and non-responders, or even adverse responders.
For the cases of IACCs and cancer patients, patients display a significant degree of knowledge in their domain. The #LongCOVID and #PACVS communities are highly sophisticated on the latest research, and have often participated, if not driven, the research themselves! For those with these conditions, there hasn't been any other option.
#LongCOVID patients have been abandoned. The situation is even worse with #PACVS, given that health regulatory agencies had and have significant incentives to deny and minimize. https://t.co/9hARwic3Nv
With any frontier which is forced out of the regulated environment, it is a wild-west, with people promoting their own treatments with or without proper validation. Here, reputation is an important mechanism and screens out bad actors, at least in the long term.
To address the challenges of #LongCOVID and #PACVS, it requires trying a bunch of different things, and seeing what works. While #NIH and others are moving directionally forward on this, that's always slow and patients can't wait.
In the meantime, while institutional channels are frozen, https://t.co/kWFDPz36Nu continues to advance research on #PACVS.
You can keep up with the latest #PACVS and #LongCOVID with our new research tracker, keeping up on the latest literature, trials, and therapeutic agents.
https://t.co/dHncjT1hw3
Great news! Patients deserve access, families deserve agency, and government should NOT be the last obstacle between a sick child and a treatment that might help. Learn More: https://t.co/VMOLuzeXU2 #MomsForAmerica #RightToTry
Over my time in Congress, I've worked across the aisle to give hope to terminally ill patients who were desperate to save their lives. That's why I'm helping to lead a coalition to pass the Right to Try for Individualized Treatments Act. Let's get this one across the finish line.
https://t.co/2ya0g7T6mY
NEW Op-Ed: Whatever Happened to Right to Try? - "Right to Try was a promise. Itโs time for the FDA to keep it." @raquelmelanie #MomsForAmerica #RightToTry https://t.co/4fnnnQ1HxK
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