Author Archives: sick_webadmin

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 therapy products for SCD for individuals insured by Medicaid. Participation by state Medicaid programs will be optional.

SCDAA is excited about the model and appreciated that CMMI engaged with our organization and the broader SCD community while developing the demonstration. SCDAA will be reviewing the information released today in detail, but we are hopeful that this effort will help ensure that individuals living with SCD on Medicaid who are interested in pursuing gene therapy are able to do so.

To read the full statement from the Centers for Medicare & Medicaid Services, click here.

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 narrow margins. The 2020-2022 Senate was split 50–50*, with Vice President Kamala Harris breaking tie breakers, effectively giving the Democrats control, while the House was controlled by the Democrats 219 seats to 213 Republican seats.

This November, the Democrats held the Senate, winning 50 seats to the Republicans 49. One race is going to a runoff in mid-December (GA). Regardless of the outcome, the Democrats will retain control, with Senator Chuck Schumer (D-NY) expected to remain as Majority Leader and Senator Mitch McConnell (R-KY) to remain as Minority Leader. In the House, the Republicans the Republicans have won 220 seats, while the Democrats have 213 seats. While two seats are still undecided, control of the House will flip to the Republicans.

Once the results are finalized, the House of Representatives will elect a new Speaker of the House, which will certainly be a Republican. Who that will be remains undecided, with Rep. Kevin McCarthy (R-CA) as the front runner. The current Speaker of the House, Rep. Nancy Pelosi (D-CA), has stepped down from leadership. Representative Hakeem Jeffries (D-NY) has been elected as the new Minority Leader of the House. The new Congress will begin January 3, 2023.

What does this mean for sickle cell disease?

The Republican flip of the House Representatives means that the chair and composition of every committee and subcommittee will change. That means the person deciding which pieces of legislation make it to and through committee and to the floor for a vote will change. Republicans have been open to working on sickle cell disease issues in the past, however, the number of supporters of SCD is drastically lower. Republicans are also less likely to support increased spending for any program. The current pending bills have price tags of $50 million to $535 million annually. Republicans are less likely to support these numbers in their current form.

More importantly, the Senate will still be controlled by the Democrats and the Presidency will still be controlled by the Democrats. This means we will have divided government. As we have seen over the past 20 years, divided governments struggle to pass any meaningful legislation at all. Passing SCD legislation is about to become much more difficult.

I hope this summary was helpful!

-John Otsuki, SCDAA government relations manager

*The Democrats technically have two independents, Senators Angus King and Bernie Sanders, but both caucus and vote with the Democrats.

Texas State Representative Jarvis Johnson Files Four Sickle Cell Disease Related Bills

Sickle Cell Association of Houston has been working on new state legislation in Texas, and on March 6, 2019, State Representative Jarvis Johnson filed four bills that will raise awareness, create a grant program, and improve the lives of those living with sickle cell disease in Texas.
“Sickle Cell is too often a forgotten illness, that predominately affects Black and Hispanic communities. We must work to ensure those living with sickle cell are given the ability to live as pain-free as possible while they are in crisis. Awareness and research is incredibly important to continue to improve the lives of sickle cell patients. I filed these bills today with the intention of not only to bring solutions to Texans living with Sickle Cell Disease, but also to spark a conversation regarding this disease” Representative Johnson stated.
Click here to read the full press release.