#Firdapse - Twitter Hashtag

almost 7 years ago

@davidsirota @BernieSanders And Bernie has proven he is not afraid to stand up to drug companies! He called out Catalyst Pharma when they used a loophole in the Orphan Drug law to set a price of a rare disease drug (that costs pennies to make!) at $375,000 per patient per year. #Firdapse

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Frank Tarazi @drfranktarazi

almost 7 years ago

$CPRX #Firdapse failed to improve symptoms of #Congenital #Myasthenic Syndromes (CMS), an ultra-rare debilitating, chronic #neuromuscular and neurological diseases in adults and children aged > 2 years!-Phase III trial.

drfranktarazi's tweet photo. $CPRX #Firdapse failed to improve symptoms of #Congenital #Myasthenic Syndromes (CMS), an ultra-rare debilitating, chronic #neuromuscular and neurological diseases in adults and children aged > 2 years!-Phase III trial. https://t.co/skc8MtvTPL

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Ikris Pharma Network Pvt Ltd @IkrisPharma

almost 7 years ago

Firdapse (amifampridine) for LEMS #RareDisease #healthcare #namedpatientsupply #orphandrugs #ikrispharm #firdapse #amifampridine #syndrome #lamberteatonmyasthenicsyndrome

IkrisPharma's tweet photo. Firdapse (amifampridine) for LEMS
#RareDisease #healthcare #namedpatientsupply #orphandrugs #ikrispharm #firdapse #amifampridine #syndrome #lamberteatonmyasthenicsyndrome https://t.co/TnLxIImjg4

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Mal @TMBB_Super_Fan

over 7 years ago

A very thorough analyst's view of #jacobus #FDA approval of #ruzurgi for pediatric patients & #catalylstpharma successful #Firdapse launch. #LEMS #LambertEatonMyasthenicSyndrome @GlobalGenes @catalystpharma #careaboutrare https://t.co/vqBQOQVOMl

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Kate Learoyd @PKUFamily

over 7 years ago

The USA has stopped #BioMarin with its rip-off exploitation of a license for #Firdapse (licensed to #catalyst). Well done @rebecca_hovde 💕Meanwhile, #Kuvan is still in BioMarin’s pocket. Who’s looking out for us? Time for a follow-up @deb_cohen ? #Kuvan10yearswaiting

David Mitchell @DavidP4AD

over 7 years ago

God Bless @FDA. Approved a second version of LEMS drug to correct a terrible pricing abuse of patients. Now we wait to see price of competitor. https://t.co/DQvbof9pfP

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Adam R Houston @HealthLawAdamH

over 7 years ago

Intriguing twist in #OrphanDrug saga of #Amifampridine for #LEMS, as FDA possibly undercuts $375,000 #Firdapse by approving longstanding compassionate use product from #Jacobus for child use (#offlabel in adults). Curious to see pricing. #RareDiseases https://t.co/I0UHMe4l0I

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Kate Learoyd @PKUFamily

over 7 years ago

#BioMarin patented an existing drug #Firdapse for LEMS, previously available for a few hundred dollars a year, then suddenly costing $375k. Nice business model, replicating their nice job on BH4/Kuvan. @rebecca_hovde @deb_cohen

heat. @heatinformatics

over 7 years ago

Almost immediately after Catalyst announced its pricing scheme, the #pharma company received a letter from Sen. Bernie Sanders demanding the company justify it | https://t.co/CNApRvP0v5

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RT Boom Bust @BoomBustRT

over 7 years ago

Today, major pharmaceutical CEOs will testify in front of Congress on why drug prices are so high. Most recently, Catalyst skyrocketed #Firdapse to more than $300,000! #BigPharma https://t.co/VV6g2d3pSJ

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Betty Lea @Betty_Lea

over 7 years ago

$375,000 price leads disabled mom to ration meds‼️👎🏻😱👎🏻⁉️ via @CNN #firdapse #catalyst #jacobus #pharmaceutical #drugs #LEMS #prescription https://t.co/RzV1yQHwyp

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HealthEconomics.com | A Scientist.com Company @www_healthecon

over 7 years ago

Catalyst Pharmaceuticals’ Firdapse, which is used to treat Lambert-Eaton Myasthenic Syndrome, will hit the market with a list price of $375,000 per year, Reuters reports. #HEOR #Pharma #Firdapse | https://t.co/0t7NKvW1FM

www_healthecon's tweet photo. Catalyst Pharmaceuticals’ Firdapse, which is used to treat Lambert-Eaton Myasthenic Syndrome, will hit the market with a list price of $375,000 per year, Reuters reports. #HEOR #Pharma #Firdapse | https://t.co/0t7NKvW1FM https://t.co/vg1HyIRthh

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David Steensma, MD @DavidSteensma

over 7 years ago

@VincentRK @ASlavitt @DavidP4AD @policydeb @aholdenj @peterbachmd @mtmdphd Catalyst $CPRX #Firdapse saga made it clear that these things are disconnected. Catalyst offered no innovation (drug around for decades), yet is charging a huge price - because they can. We need to reward real innovation, not regulatory gamesmanship and exploitation of monopoly.

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Thread Reader App

@threadreaderapp

over 7 years ago

@echriste123 Hallo you can read it here: Thread by @VincentRK: "1/ During my Grand Rounds talk @MayoClinic on cost of drugs I had a question on drug that was recently p […]" #LEMS #Firdapse https://t.co/SHRXzNfgkL Talk to you soon. 🤖

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Max Konig @MaxKonigMD

over 7 years ago · Baltimore

A #drug discovered in 1970, available for free since 1990, slightly modified with the intent to generate between $300 million and $900 million/year off a small number of patients with #LEMS that depend on it. #Ethical? #Firdapse 💵

Vincent Rajkumar

@VincentRK

over 7 years ago

1/ During my Grand Rounds talk @MayoClinic on cost of drugs I had a question on #LEMS drug #Firdapse that was recently priced at a mindboggling price of $350,000 per year by @CatalystPharma - I answered it. What happened next was very very powerful and moving. Read on 👇

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Vincent Rajkumar

@VincentRK

over 7 years ago

1/ During my Grand Rounds talk @MayoClinic on cost of drugs I had a question on #LEMS drug #Firdapse that was recently priced at a mindboggling price of $350,000 per year by @CatalystPharma - I answered it. What happened next was very very powerful and moving. Read on 👇

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Anshuman @JaswalAnshuman

over 7 years ago

Price of life-changing treatment going from free to $375,000/year- first image that came to my mind after reading response of drug-maker #Catalyst was of #CrueladDeVil from the movie #101Dalmatians and the second was of #PharmaBro #MartinShkreli #Firdapse https://t.co/7j2zCqfN2E

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Dr David Nicholl @djnicholl

over 7 years ago

Hey @SenSanders ...we got there first with #firdapse in 🇬🇧...took on #bigpharma & won https://t.co/TTPzLDp51d 👍

The Hill

@thehill

over 7 years ago

Sanders demands answers from drug company on why once-free drug now costs $375,000 a year https://t.co/JsiJaRLqSK

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Rockaway 11694 @Rockaway11694

over 7 years ago

The drug, #Firdapse, is used to treat Lambert-Eaton Myasthenic Syndrome (LEMS) San Francisco Business Times article from 2012 covers the #Pharmaceutical drug deal -- https://t.co/Zta8P7hcdk @SenSanders @SenWarren @US_FDA @soledadobrien

Victoria Brownworth @VABVOX

over 7 years ago

No drug should be priced out of the range of the user. These obscene prices are inexcusable. I am grateful @SenSanders is drawing attention to this issue, but I have to wonder why the #GOP is silent on this, considering how many of their constituents and voters are impacted.

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Coffee Horse @CoffeeHorse1

over 7 years ago

@CatalystPharma 375K a year in blood money to keep someone alive. How's this for a slogan: "#Firdapse : Next time try being born without Lambert-Eaton Myasthenic Syndrome."

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