Acromegaly Community
@AcroCommunity
Please visit our website at http://www.AcromegalyCommunity.org. Membership, info & support always free!
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340B Program savings should help rural hospitals and community health centers, not large for-profit companies. @SenMullin, please champion bipartisan #340BReform to close program loopholes and protect vulnerable patients.
A new review by Andrea Giustina, MD, and Annamaria Colao, MD, PhD, updates the pathophysiology and disease course of acromegaly, focusing on the general clinician’s key role in early diagnosis and management. At diagnosis, approximately 70% of patients with acromegaly have…
On Wednesday, the @GOPHELP committee will hold a hearing on the future of biotech. Rare diseases, like Acromegaly, depend on R&D to develop innovative treatments. @SenMullin, please push to strengthen funding for the FDA and NIH to support R&D and patient access to treatments.
Thank you @SenMullin for listening to patient voices & pushing progress on the upcoming @GOPHELP hearing on #340B. Spending soared from $6.6B (2010) to $43.9B (2021) while patients still face barriers. Reform must introduce transparency and accountability to this program.
The 340B Program’s rapid expansion has been linked to insurance premium increases of $22 billion a year, costing families $415/year. This was never the goal. @SenMullin please support #340BReform to restore integrity & reinvest savings in care. nationalalliancehealth.org/wp-content/upl…
•@LAGovJeffLandry, Louisiana patients need reform that tackles the root cause of high drug costs: PBMs’ profits tied to inflated prices. We need to bring transparency and fairness to the system to lower out of pocket costs for patients. #LALeg
Large healthcare entities say the 340B Program wasn’t meant to lower patient costs, yet they pocket millions while vulnerable patients are left behind. @SenMullin please help to #Fix340B. help.senate.gov/rep/newsroom/p…
The #MFN rule won’t help Medicaid patients. No cost savings, just less access & lost innovation. We need reform that works. The #EPICAct is the right path for patients. @RepGusBilirakis @DrNealDunnFL2 @SenAshleyMoody @SenBillCassidy @SenatorWicker @SenMullin
The #IRA’s “pill penalty” is undermining innovation in pills and tablets, medicines that 90% of Americans rely on. @CongresswomanSC @RepTroyCarter @BennieGThompson @repkevinhern please support the #EPICAct weworkforhealth.org/post/new-resea…
weworkforhealth.org
New Research Reveals the Devastating Impact of the Inflation Reduction Act’s “Pill Penalty” on...
Small-molecule drug investment has fallen 68%—and 74% for diseases mainly affecting Medicare patients—since the IRA was introducedFOR IMMEDIATE RELEASEApril 14, 2025 WASHINGTON, D.C. – New research...
Small-molecule medicines treat cancer, heart disease & more, but they face harmful obstacles under the "pill penalty." Patients deserve better. @VernBuchanan @RepGregSteube @repkevinhern, please stand up for health access and innovation. Support the #EPICAct to protect patients
90% of U.S. prescriptions are pills. The “pill penalty” puts those at risk, leading to fewer treatments and less access. @VernBuchanan @RepGregSteube @repkevinhern, please support the bipartisan #EPICAct to fix this harmful penalty.
Patients shouldn’t have to pay more while middlemen profit. Congress must include #PBMReform in the year-end healthcare package @RepGusBilirakis @VernBuchanan @Kat_Cammack @USRepKCastor @DrNealDunnFL2 @RepDarrenSoto @RepGregSteube @repkevinhern
Pharmacy benefit managers control 80% of insured drug transactions in the U.S. #PBMReform is needed to hold PBMs accountable. @repkevinhern ohiocapitaljournal.com/2024/07/26/dru…
Pharmacy benefit managers list hundreds of prices for the same drug, some that are 51 times as much as others. It's time for #PBMReform @repkevinhern ohiocapitaljournal.com/2024/07/26/dru…
On #AcromegalyAwarenessDay, we collectively raise awareness and offer hope to the acromegaly community. At Crinetics, we’re proud to work alongside patient-centered organizations like @AcroCommunity, @AcromegalyCAN, @pituitaryorg, and @Pituitary_org.
The Acromegaly Community: An international haven for people living with acromegaly rarerevolutionmagazine.com/the-acromegaly… #RareRevolution
Free SharedIt link: rdcu.be/dJ6TP Read our collab international review led by @DrDanielaEspo. #Complications in #acromegaly are numerous &important to treat simultaneously. Personalized medical RX should consider all comorbidities. @OHSUBrain @AcroCommunity @WAPO_org
New content online: Diabetes mellitus in patients with acromegaly: pathophysiology, clinical challenges and management dlvr.it/T7w7zB
Superb talk by @gadelha_monica! Next up is @martin_reincke and Mark Gurnell for HCP. #patients meet with @CSRFnet and @AcroCommunity @MSKCancerCenter @MSKNeurosurgery
Looking forward to session II of the #MSKpituitaryCME, where we welcome @gadelha_monica, @BouNassif_MD, and @EBGeerMD to discuss new therapies for #Acromegaly, intra-operative AI, & patient reported outcomes in #Cushings. bit.ly/pituitary2024
One week away - still time to sign up! @MSK_DeptOfMed @MSKCancerCenter @gadelha_monica @martin_reincke @AcroCommunity @CSRFnet
Join us for a #pituitary tumor update, focusing on evidence-based care & multidisciplinary collaboration. Providers & patients welcome! 🗓️ April 5 (Virtual) Register ➡️ bit.ly/pituitary2024 @EBGeerMD @MSKNeurosurgery @AcroCommunity @CSRFnet @MSKCancerCenter #MSKpituitaryCME
Consider joining our virtual #pituitary support group featuring @jakeeide1 . @AcroCommunity @pituitaryorg @PituitarySoc @HeadfortheCure @theABTA
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