Sickle Cell Data
@sicklecelldata.bsky.social
Data about sickle cell disease in NYC and beyond | sicklecelldata.substack.com
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Sickle Cell Disease Patients Disproportionately Leave Hospitals Against Medical Advice | Health Affairs Forefront
The code “left against medical advice” should be recognized as a sentinel event—a preventable system failure that signals unmet care needs.
www.healthaffairs.org
Public data from NYC hospitals shows that 14% of adult patients admitted for SCD leave against medical advice, over 3x the citywide average 👇
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
Biotech: We’ll take it from here and charge payors (govt programs like Medicaid, commercial insurers) $2 million
Taxpayers and charities helped develop the gene therapy Zolgensma.
Then it debuted at a record price of $2M+ per dose, ushering in a new class of wildly expensive drugs. Its story upends the widely held conception that high prices reflect huge industry investments in innovation.
(Published Feb.)
Then it debuted at a record price of $2M+ per dose, ushering in a new class of wildly expensive drugs. Its story upends the widely held conception that high prices reflect huge industry investments in innovation.
(Published Feb.)
What a $2 Million Per Dose Gene Therapy Reveals About Drug Pricing
Taxpayers and charities helped develop Zolgensma. Then it debuted at a record price, ushering in a new class of wildly expensive drugs. Its story upends the widely held conception that high prices ref...
www.propublica.org
October 2, 2025 at 4:29 PM
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
Biotech: We’ll take it from here and charge payors (govt programs like Medicaid, commercial insurers) $2 million
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👇
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👇
News round-up (June-September)
Data from New York City plus federal-level developments
sicklecelldata.substack.com
September 25, 2025 at 11:17 PM
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👇
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 👇
Sickle Cell Disease Patients Disproportionately Leave Hospitals Against Medical Advice | Health Affairs Forefront
The code “left against medical advice” should be recognized as a sentinel event—a preventable system failure that signals unmet care needs.
www.healthaffairs.org
September 25, 2025 at 8:51 PM
Public data from NYC hospitals shows that 14% of adult patients admitted for SCD leave against medical advice, over 3x the citywide average 👇
🚨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...
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...
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 ...
docs.google.com
April 8, 2025 at 9:15 PM
🚨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...
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...