Top Tweets for #EAPNow
"Everyone should be on this Bill!"
~ @RepMikeQuigley
Thank you Congressmen Quigley & @JeffFortenberry for cosponsoring the #ACTforALS!
#ALS #DyingWaiting #ExpandedAccess
#EAPNow @stevens_nation @als_now @nicolecimbura
@RachelM80531627 @POTUS @JoeBiden @FLOTUS @DrBiden @WHCOS when Beau was battling #glioblastoma, you said people #DyingWaiting should have access to promising drugs stuck in clinical trial silos.
We need #DrugsinBodies & an #ALSMoonshot
@SecBecerra we are counting on you!
#FDARedTape #EAPNow
@Barbie_Ken100 Sadly it's Biogen's attempt at PR spin to quiet the attacks on social media.
Many people w rapidly progressing #ALS will be dead or on a trach and likely unable to get #Tofersen in July. Huge question if they will meet .05 p-value in Sept.
No reason they can't offer #EAPNow
#BlistersandTears ... #ThisisALS
When will people without #ALS start showing one iota of compassion for people with ALS?
#Biogen denied @Mayuri_Saxena access to #Tofersen 5x -- when she could still move & scream
#DrugsinBodies #EAPNow
#BiogenBull
๐๐ฝExactly! "Fast means Fast"
Every day = thousands more motor neurons die!
The only "safety" issues are the number of people with #SOD1 mutation who are going to die or progress so quickly that they won't be able to get Tofersen in July or the Fall.
#DrugsinBodies #EAPNow
3/ People in placebo won't drop out of the trial. The law PROHIBITS someone who qualifies for the trial from getting EAP. Why would someone drop out of trial with 5 yrs of OLE to the drug when they can't qualify for the EAP?
#MoreBioethicistLies #DrugsinBodies #EAPNow
1/ Most people alive TODAY w rapidly progressing #ALS won't be alive by mid-summer or will be on trachs -- which will disqualify them for the EAP.
#CompassionateUse requires compassion.
#DrugsinBodies #EAPNow
500 Lives vs Biogen's $41 Billion Market Cap
People with #ALS are #DyingWaiting for #DrugsinBodies.
Wonder what Biogen's institutional investors think? #Vanguard, #Blackrock #RenaissanceTechnologies & #PrimeCapMgmt
#BiogenGrantAccess #EAPNow
@Chance4Lisa @als_now
๐จWe need your help.๐จ @biogen's dragging its feet on granting Expanded Access for Lisa and others with fast-progressing #ALS. Urgently email them at [email protected] and [email protected]. #DrugsInBodies #ItsTime #BiogenGrantAccess
When a Board member of a national PATIENT ADVOCACY organization attacks #ALS PATIENTS fighting for their lives & defends companies who aren't, it makes me question their priorities.
#Biogen's donations vs Patients fighting for #Tofersen?
#DrugsinBodies #DyingWaiting
#EAPNow
Last night on Twitter, an @alsassociation board member asked some questions about Team Lisa's efforts. Thank you, John Robinson, @CWOB_Ancient, for bringing #ALSA into this important conversation. Please see our message to @alsassociation. Let's chat. #tofersen4lisa
2 yrs & 4 requests to Biogen to get access #Tofersen ... all denied. Mayuri deserves a chance to halt the harm from SOD1 gene.
@US_FDA & @Biogen Mayuri is a warrior. Please give her access to a #MedicalArsenal to fight #ALS
#DrugsinBodies #ACT4ALS #EAPNow
#CompassionateUse
Great excerpt from the article talking about the drug manufacturer's support for #ExpandedAccess aka "parallel track" to get #DrugsinBodies
@bmsnews stepped up for people #DyingWaiting
@Biogen if they can do it, so can you
@Chance4Lisa @Mayuri_Saxena @bsw5020
#tofersen #EAPNow
Silence is Complicity
~ Wisdom from Albert Einstein
#DrugsinBodies #DyingWaiting #EAPNow
#ExpandedAccess #CompassionateUse
#HumanityMeetsScience
Reason for Hope from one of the world's top ALS researchers.
Reason to increase #ExpandedAccess programs now as people today cannot wait a few more years to get #DrugsinBodies
#CompassionateUse #EAPNow #DyingWaiting
@Chance4Lisa #Tofersen @Mayuri_Saxena
We appreciate you @gregggonsalves โค๏ธ Our #ALS tribe pleads for urgency to save lives but we are ignored and rejected. The apathy is killing us. @biogen @POTUS #DrugsinBodies #eapnow #tofersen4lisa #dyingwaiting #fighting4lisa #LeadersLead
Four times Biogen has denied 36 year old Mayuri's #ExpandedAccess request for #Tofersen.
With each denial, her #ALS progressed more.
@Biogen's slogan is #ScienceMeetsHumanity.
Where was the humanity in these denials?
#DrugsinBodies #EAPNow
#CompassionateUse
@gregggonsalves
Grateful for esteemed voices to join us in this battle for #ExpandedAccess.
@gregggonsalves is a professor of both Law & Epidemiology at Yale. His leadership & advocacy is so incredibly important! #LeadersLead
#DrugsinBodies #DyingWaiting
#HumanityMeetsScience #EAPNow #ALS
Bravo! Thank you @gregggonsalves for your leadership on this issue!
Massive gratitude for you setting the record straight that EAPs don't hurt patients of tomorrow or jeopardize trials.
People with #ALS need more voices like yours!
#DrugsinBodies #DyingWaiting
#EAPNow
@MinoSean @alsassociation @Lance4good @chrisbluemle @LynnAaronson1 @KSheehanHeart @GoSueGo @slk1 @StuartObermann @AbeBiel @NancyLeaMond @fred_degrandis @momfrates @ALSMNDAlliance @kemenkhaus @Dave_Shore @CharityNav pALS dont care what you own as long as you fight for their lives TODAY
People are #DyingWaiting for access to trial drugs & ALSA is bankrolling $70M of #IceBucket $
#pALS raised #IceBucketChallenge $ - not ALSA
pALS should get a voice in how it's spent!
#IceBucketFail
#EAPNow
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