Government (NIH): invests $450 million in everything from basic science research (socializing early stage risk) to clinical trials to develop SMA gene therapy. Pt groups play a role too.
Biotech: We’ll take it from here and charge payors (govt programs like Medicaid, commercial insurers) $2 million
02.10.2025 16:29 — 👍 3 🔁 0 💬 0 📌 0
News round-up (June-September)
Data from New York City plus federal-level developments
NYC report on sickle cell disease:
Over 50% of children with SCD covered by Medicaid had a prescription fill for hydroxyurea in 2023, whereas the majority of adults did not.
More on HU uptake, adherence, and other data points👇
25.09.2025 23:17 — 👍 2 🔁 0 💬 0 📌 0
ER by night 🌙, Democracy by day 🌞
ER Doc 📍Mass General Hospital 👨🏾⚕️|
CEO📍A Healthier Democracy (http://bit.ly/3jAU434) |
Assistant Prof.📍Harvard Medical School |
Building Vot-ER (https://vot-er.org/) & Link Health (https://link-health.org/) |
Pediatric Hematologist | #SickleCell advocate & physician-scientist | #BoyMom | #Medsky #Pedsky #HemeSky
Epidemiologist, lover of the ocean and ice cream. Mom of two toddlers. Founder of “Your Local Epidemiologist”. https//yourlocalepidemiologist.substack.com
Epidemiologist and a toddler mom| #episky #reprosky #medsky #sicklecell
#sicklecell advocate | blood doctor | drug developer | podcaster | TEDx speaker
Doctor. Scientist. Sickle Cell Disease.
Biomedical Science in Africa.
CHARTA - Coordination, Health, Advocacy, Research, Training in Africa
✨TIME100 Health x 📚NYT best-selling author, LEGACY 🩺 @vikingbooks, 📕: @sterlinglordlit, 📺: @csetalent, 🗣️: @penguinrandomhouse Speakers Bureau
Reporting from the frontiers of health & medicine.
Science and global health reporter for The New York Times
https://www.nytimes.com/by/apoorva-mandavilli
Signal: amnyt.91
physician-scientist, author, editor
https://www.scripps.edu/faculty/topol/
Ground Truths https://erictopol.substack.com
SUPER AGERS https://www.simonandschuster.com/books/Super-Agers/Eric-Topol/9781668067666
Pediatric pulmonologist at Boston Medical Center, researcher, advocate, mom, wife, ally. #asthma #sicklecell 🫁disease, #adoptarescuepup. She/her, Twitter immigrant. #KidVenger🦄, #MedSky
https://www.bumc.bu.edu/camed/profile/robyn-cohen/
Sickle Cell Doc and hematologist fighting for our warriors, locally and globally
Peds hematologist oncologist, mother, dreamer, pacifist, justice seeker. Retweeted by Wonder Woman #HemeSky #MedSky #CakeForBreakfast #IronMatters http://www.HCWvsHunger.org
👩🏻🔬 Simplifying public health with data-driven insights
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🎓 MPH, PhD
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https://yourlocalepidemiologist.substack.com/
ASCAA is a 501(c)3 non-profit organization assisting people with sickle cell anemia since 1971. ASCAA provides testing, counseling, education (at multiple levels), resources, and more.
www.ascaa.org
https://linktr.ee/americansicklecellanemia
Health communications • Community insights
The largest digital advocacy organization for #sicklecelldisease and #sicklecelltrait.
Sickle cell experts who do education, research and digital advocacy.
Official account of the Sickle Cell Society in the UK. We support and represent people affected by sickle cell disorder to improve their overall quality of life.
Adult Hematologist. Tennis aficionado. The views expressed are my own
Nonprofit organization
SCTPN is a 501 (c)(3) tax-exempt organization providing support for individuals and families living with sickle cell disease (SCD), and thalassemia (Cooley's Anemia), throughout NYS and globally.
