Breaking News: Recent Sickle Cell Advocacy
Advocacy at the local, state, federal, and international levels is necessary to improve health care systems and conquer sickle cell disease (SCD). Over the past week, several legislative actions were taken to enhance public support for the sickle cell community.
New SCD Legislation Introduced and Passed in U.S. Congress
Sickle Cell Comprehensive Care Act Introduced in U.S. Congress: On December 9, 2021 Representatives Danny Davis (D-IL-7) and Michael Burgess, MD (R-TX-26) introduced H.R. 6216, Sickle Cell Disease Comprehensive Care Act, a bill to improve access to comprehensive, high-quality outpatient care for individuals living with sickle cell disease (SCD) who are enrolled in Medicaid. Companion legislation (S. 3389) was introduced in the Senate on December 14, 2021, by U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC). Read a press release on the legislation here.
SCD Awareness Month Resolution Passed in U.S. Senate: Earlier this week, the Senate passed a resolution, introduced by Senator Booker (D-NJ) and Senator Scott (R-SC), to designate September as sickle cell awareness month. The resolution passed unanimously. Read the resolution here and a related press release here.
U.K. Parliament’s House of Commons Discusses New Report on SCD Treatment
The United Kingdom’s (U.K.) All-Party Parliamentary Group (APPG) and the Sickle Cell Society recently published the report, “No One’s Listening: An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care.” On Wednesday, December 8, 2021, parliamentary member, and chair of the APPG on Sickle Cell and Thalassaemia, Right Honourable Pat McGann opened a debate on the report and related research briefing in the UK House of Commons. Learn more about the report and watch the debate here.
ASH Releases New PSA Video on Health Equity and SCD Care
The American Society of Hematology (ASH) recently released a public service announcement (PSA) video on issues of inequity in health care services provided to individuals living with sickle cell. This video offers an introduction to SCD, issues of systemic inequity, and resources for providers and advocates to learn more about sickle cell and ways they can fight implicit bias in their work. Watch the video here.
SCDAA Announces New President and CEO: Regina Hartfield
The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as its new CEO and president. Ms. Hartfield will officially begin serving in this role effective January 14, 2022. Regina is an experienced non-profit professional and sickle cell advocate, demonstrated by her service on the SCDAA’s Board of Directors for three years and leadership as chair of the Association’s fundraising committee. Read the official press release here.
Sick Cells Caregiver Resources Webpage & Caregiver Help Desk Program
Sick Cells is committed to supporting warriors and their caregivers in the fight to conquer SCD, so much so that they developed a comprehensive webpage of various resources to help caregivers support their warriors. Additionally, Sick Cells and Caregiver Action Network partnered to develop a comprehensive Caregiver Help Desk program to aid caregivers of individuals living with SCD navigate various parts of the caregiver and SCD journey. Visit the Sick Cells Caregivers Resource page here.
New NHLBI Blood Diseases and Disorders Education Program
The National Heart, Lung, and Blood Institute (NHLBI) recently launched the Blood Diseases and Disorders Education Program, a national health education program that aims to bring greater visibility to the diagnosis, treatment and management of blood diseases and disorders, and blood safety. This new program supports communities of blood diseases and disorders, like sickle cell, by developing and disseminating educational content for individuals living with blood diseases and disorders, their family members, caregivers, healthcare providers, and other stakeholders interested in blood health education. Learn more about the program here.
ADRP Blood Donor Diversity Social Media Toolkit
The Association of Donor Relations Professionals (ADRP) has partnered with SCDAA to spread awareness about the need for blood donations from diverse populations to improve transfusion care for people living with sickle cell. To this end, ADRP developed a Blood Donor Diversity toolkit for National Sickle Cell Awareness Month, which includes social media social graphics, videos, and other educational materials in English and Spanish. Access ADRP’s Donor Diversity Resources here.
SCDC Snapshot: Five-Year Anniversary Fact Sheet
The Sickle Cell Disease Coalition (SCDC) is an alliance of diverse stakeholders from across the world uniting to conquer sickle cell. Since its establishment in 2016, the Coalition has grown tremendously in its membership, operations, and impact. In celebration of the SCDC’s fifth year, the Coalition is sharing some highlights of its current priorities, accomplishments, and future activities through a 2021 SCDC Snapshot fact sheet. View the SCDC Snapshot here.
Fact Sheets on New U.S. FDA Approved SCD Therapies
Research on SCD continues to expand and produce new therapies to help manage the disease. To help individuals living with SCD explore treatment options with their health care team, the SCDC released a series of SCD Therapy Fact Sheets. These fact sheets offer plain-language information on three recently approved therapies by the U.S. Food & Drug Administration (FDA): Crizanlizumab, L-Glutamine, and Voxelotor. Each fact sheet describes how the therapy works, evidence and research surrounding the therapy, and tips for individuals with SCD to discuss treatment options with their health care team. Access the fact sheets here.
Repository of Global Sickle Cell Educational Tools
Sickle cell has been historically misunderstood due to its complicated history, as well as the lack of research and public awareness dedicated to the condition. To address this issue, the SCDC recently published a repository of global SCD educational tools that equip stakeholders with evidence-based, easily understandable information on sickle cell. The repository includes a collection of educational infographics and slides on SCD that can be tailored for presentations to an array of stakeholders. These tools are written at a secondary school level and designed for international and domestic use. Access the repository here.
SCD Implementation Guide for Hospitalists
The Society of Hospital Medicine (SHM) recently released an SCD Implementation Guide to equip hospitalists and other hospital clinicians identify and use optimal strategies for effectively treating SCD. Along with the Implementation Guide, SHM released two educational modules for hospitalists on the presentation of SCD and transitions of care for people with SCD. Access the SHM SCD Implementation Guide resources here.
Sickle Cell Trait Symptom Registry
Under a three-year IRB protocol agreement through the Genetic Alliance, the As One Foundation and LunaDNA are building a registry of individuals living with sickle cell trait and their caregivers. This registry will also collect information around any symptoms associated the sickle cell trait experienced in hopes of building an evidence base around trait. Access the registry here.
New Cheat Codes: A Sickle Cell Podcast Episode on Patient Navigators for SCD
Tune into the latest Cheat Codes podcast episode, as Dr. Ahmar Zaidi, from Agios, and Dr. Mike Callaghan, from the Comprehensive Sickle Cell Center at the Children’s Hospital of Michigan, discuss how patient navigators are changing SCD with special guest, Dr. Wally Smith, Director of the Adult Sickle Cell Program at the Comprehensive Sickle Cell Center at Virginia Commonwealth University (VCU). Listen to the episode here.
NIH Genomics & Health Disparities Lecture Series: From Peril to Promise - Equity and Integrity in Science and Technology
The National Institutes of Health (NIH) is hosting a lecture series on genomics and health disparities. On December 16, 2021, from 3:00pm-4:00pm ET, Dr. Alondra Nelson, the inaugural Deputy Director for Science and Society in the White House Office of Science and Technology Policy, will provide a lecture on equity and integrity in science and technology. Learn more about the webinar and lecture series here.
17th Annual ASCAT Conference
The Annual Academy for Sickle Cell and Thalassemia is joining forces with the European Hematology Society (EHA) and the British Society of Hematology (BSH) to organize the 17th Annual Scientific Conference on Sickle Cell & Thalassemia (ASCAT). This year, ASCAT will take place virtually from January 27 to 28, 2022, and will focus on promoting the latest advances in diagnosis, treatment, and emerging fields in hemoglobinopathies. Learn more here.
3rd Annual SCCAPE Conference
The Virginia Commonwealth University (VCU) SCD Program and VCU Health Continuing Education are holding the 3rd Annual Sickle Cell Care Coordination for Achieving Patient Empowerment (SCCAPE) Conference. This virtual event will take place from March 29 to April 1, 2022. The conference will enhance attendees’ knowledge, skills, and attitude towards assessment, care coordination, medical management, and more using a person-centered approach for treatment adherence in patients with SCD to improve their quality of life. Save these dates on your calendar and keep posted on theSCCAPE website for updates on the 3rd annual conference.
1st GASCDO Global Conference: The Future of Sickle Cell Care in a Changing World
The Global Alliance of SCD Organizations (GASCDO) is hosting its first global conference from May 20 to May 21, 2022, in Accra, Ghana. The conference’s theme is, “The Future of Sickle Cell Care in a Changing World.” Save the date on your calendars and email email@example.com for more information.
4th GSCDN Global Congress on SCD
The Global Sickle Cell Disease Network (GSCDN) is holding the 4th Global Congress on Sickle Cell Disease. The event will take place from June 16-18, 2022, in Paris, France. The Congress will bring together sickle cell disease (SCD) stakeholders from various sectors, including clinicians, scientists, patients, and more to catalyze discussions around the achievements and challenges in the diagnosis, treatment and care of people living with SCD globally, as well as the prospects for further progress. Learn morehere.