The Senate and the House of Representatives recently introduced resolutions expressing support for the designation of September 2024 as Sickle Cell Disease Awareness Month. In the Senate, the resolution was led by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) along with 10 bipartisan Senators......
JUNE LEGISLATIVE BRIEFING
SCDAA’s in-person Advocacy Days were a huge success! On May 8 and 9, representatives from 13 SCDAA member organizations across 11 different states traveled to Washington, D.C., to meet with members of Congress and their staff to talk about issues impacting the SCD community......
MARCH LEGISLATIVE BRIEFING
For those who have registered to participate in SCDAA’s Advocacy Day, which will be in person in Washington, DC, May 8-9, 2024, we thank you. We are excited to have you join us as we walk the halls to talk with federal legislators about issues important to the SCD community......
CMMI Announces the Cell and Gene Therapy Access Model
Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene.....
Midterm Election Outcomes and What they Mean for SCD
An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total). Before the election, the Democrats controlled both the Senate and the House, both by.....
Sickle Cell Disease is Not a Joke
This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this news with a tone-deaf skit depicting a workplace Yankee Swap.....
June 19, 2023, is Officially Sickle Cell Awareness Day..
Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a........
Afimmune joins the
SCD C.A.R.E.S. Consortium
Dublin, Ireland, 19 June 2023: Afimmune, a clinical stage biopharmaceutical company developing novel rare disease therapeutics, today announced it has.....