We’re in February, but this is an excellent idea for a duo Halloween costume

Massachusetts woman living with painful sickle cell disease aims to inspire at New York City Marathon Amy Cohen is running the New York City Marathon despite living with the painful effects of sickle cell disease.

Amy Cohen finished the NYC Marathon in 6:09!

www.cbsnews.com/amp/boston/n...

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

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👇

Public data from NYC hospitals shows that 14% of adult patients admitted for SCD leave against medical advice, over 3x the citywide average 👇

2025 SCD Community Sign-On Letter to HHS In the past week, the U.S. Department of Health and Human Services (HHS) issued a series of reductions in force, including suspending the entire Division of Blood Disorders at the Centers for Disease ...

🚨Action item: CDC’s Sickle Cell Data Collection program was recently suspended.

If you are interested in signing a letter in support of the program to HHS Secretary Kennedy, please see below.

Deadline tonight (Tuesday, April 8)

docs.google.com/forms/d/e/1F...