Tag Archives: Advocacy

Sickle Cell Care Expansion Act Introduced to the Senate

Ahead of World Sickle Cell Awareness Day on June 19, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from Sickle Cell Disease (SCD).

This bill, which complements legislation introduced earlier this year by Congressman Charlie Crist (D-Fla.), will enable the National Health Service Corps to provide scholarships and loan repayment assistance for those studying benign hematology – the specialty under which Sickle Cell Disease falls – making specializing in this field an easier financial decision and attracting more providers to the SCD workforce, which does not currently meet the needs of patients who are no longer receiving pediatric care. Additionally, this bill creates competitive grants to increase awareness about SCD and resources available to patients. The Senators’ legislation builds on the House version by providing more resources for hospitals to further fund support services for young adults transitioning from pediatric to adult care. 

SCDAA President and CEO Regina Hartfield commented on this legislation, noting that “A major barrier to receiving high-quality care for sickle cell warriors is the lack of access to medical professionals, such as hematologists, who are trained to treat sickle cell disease. Many of our warriors are routinely forced to choose between commuting for hours to see a specialist and receiving inadequate care. Nobody should need to travel out of state or great distances within the state during a crisis to be seen by a hematologist who understands their condition. The Sickle Cell Disease Association of America believes that the Sickle Cell Care Expansion Act will significantly increase the number of qualified physicians who specialize in sickle cell disease.”

Click here to read more about the Sickle Cell Expansion Act.   

Congressional Briefing on Progress in Sickle Cell Disease Treatment & Policy Implications

TUESDAY, JUNE 18, 2019 | 2:30 – 3:30 PM
DIRKSEN SENATE OFFICE BUILDING, ROOM G50
RSVP: Betsy Foss-Campbell, bfoss@asgct.org

Join us for updates on Gene therapy approaches presented by prominent scientists in the field
How policymakers can support the development of treatment options for sickle cell disease
SPEAKERS
Tim Scott, United States Senator
Francesca Cook, MPH, Government Relations Committee member, ASGCT; Senior Director, Pricing and Market Access, REGENXBIO
Julie Kanter, MD, Director of Adult Sickle Cell Program; Associate Professor of Hematology and Oncology, University of Alabama at Birmingham
Punam Malik, MD, Professor of Pediatrics, Marjorie Johnson Chair of Gene and Cell Therapy, Director, Cincinnati Comprehensive Sickle Cell Center; Cancer and Blood Disease Institute, Cincinnati Children’s Hospital
Rodrick Murray, Patient advocate providing a personal story on gene therapy’s value for treating sickle cell disease
Matthew Porteus, MD, PhD, Professor of Pediatrics (Stem Cell Transplantation), Stanford University
David Williams, MD, Senior Vice President and Chief Scientific Officer, Boston Children’s Hospital; Chief, Hematology/Oncology, Boston Children’s Hospital; President, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Leland Fikes Professor of Pediatrics, Harvard Medical School
How can policymakers help support the development of gene therapies for sickle cell disease?

  • Support the need for robust NIH research funding
  • Support appropriations to the sickle cell disease prevention and treatment program and implementation of new surveillance and screening authorities passed in 2018
  • Enable novel payment models for approved gene therapies

Hosted in partnership with the Pediatric Hospital Sickle Cell Disease Collaborative and

 

National Family, Patient, Public Sector, and Multi-employer Groups Join Effort to Protect Health Care Coverage

The Alliance to Fight the 40 | Don’t Tax My Health Care, a broad-based coalition committed to repealing the 40 percent tax on employer-provided health benefits welcomes Families USA, Public Sector HealthCare Roundtable, the National Coordinating Committee for Multi-employer Plans (NCCMP), and the Sickle Cell Disease Association of America in the effort to protect the health care coverage upon which more than half of all Americans depend.
Click here to read more.  

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.