Acromegaly Community

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[Acromegaly Community @AcroCommunity]

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.

[NEJM @NEJM]

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 identifiable macroadenomas that may have grown laterally and extend into the cavernous sinus. In the large Liège Acromegaly Survey, physical changes were most often what led patients with acromegaly to seek medical evaluation and care, especially the development of dysmorphic facies (in 21.5% of cases), which were associated with macroglossia, dental diastema (gaps), mandibular overgrowth, and prognathism, and enlarged hands and feet (in 13.6%). Headache (in 7.5% of cases), asthenia (in 5.9%), and excess perspiration (in 2.0%) also led patients to seek care. Coexisting conditions noted at diagnosis included thyroid enlargement (in 34.0% of cases), hypertension (in 28.8%), diabetes (in 27.5%), sleep apnea (in 25.5%), and cardiac hypertrophy (in 15.5%) (seen in figure).

Learn more in the Review Article “Acromegaly,” from San Raffaele Vita-Salute University (@MyUniSR), IRCCS San Raffaele Hospital (@SanRaffaelespa), and @UninaIT: https://t.co/NE4wsNutKi

[Acromegaly Community @AcroCommunity]

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.

[Acromegaly Community @AcroCommunity]

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.

[Acromegaly Community @AcroCommunity]

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.
https://t.co/lq5LTbhWV1

[Acromegaly Community @AcroCommunity]

•@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

[Acromegaly Community @AcroCommunity]

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.
https://t.co/Rhjrz1HTw9

[Acromegaly Community @AcroCommunity]

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

[Acromegaly Community @AcroCommunity]

@SenBillCassidy’s new 340B report shows that program entities spent as little as 1% of revenue on charity care. 340B must refocus on vulnerable patients. @SenMullin, please stand with us for real reform.
https://t.co/Rhjrz1HTw9

[Acromegaly Community @AcroCommunity]

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
https://t.co/ddxTg1hhwf

[Acromegaly Community @AcroCommunity]

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

[Acromegaly Community @AcroCommunity]

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.

[Acromegaly Community @AcroCommunity]

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

[Acromegaly Community @AcroCommunity]

@hust42104 @RevDaniel There are conditions that cause excessive height.

[Acromegaly Community @AcroCommunity]

Pharmacy benefit managers control 80% of insured drug transactions in the U.S.

#PBMReform is needed to hold PBMs accountable. @repkevinhern
https://t.co/bEFP6UQHGl

[Acromegaly Community @AcroCommunity]

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
https://t.co/bEFP6UQHGl

[Crinetics Pharmaceuticals @Crinetics]

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.

[Acromegaly Community @AcroCommunity]

The Acromegaly Community: An international haven for people living with acromegaly https://t.co/sDcpElWByl #RareRevolution

[Acromegaly Community @AcroCommunity]

@SenatorLankford please help lower OOP costs for patients by supporting #PBMReform with #SB2973. 
https://t.co/wiVBpSe4io

[Dr. Maria Fleseriu @MariaFleseriu]

Free SharedIt link:
https://t.co/gT1D1awSas 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