United to Conquer Sickle Cell Disease

SCDC Update

ASH Releases Final 2019-2021 Clinical Practice Guidelines for SCD on Stem Cell Transplantation

In 2016, the American Society of Hematology (ASH) launched an initiative to develop treatment guidelines for sickle cell disease (SCD) that reflect the newest evidence, ensuring the medical community can better treat SCD and people with SCD can make the best decisions for their care. The Society recently released the ASH Clinical Practice Guidelines on SCD: Stem Cell Transplantation, the fifth and final in the 2019-2021 ASH Clinical Practice Guidelines on SCD series. Check out the guidelines and associated resources, such as this video and implementation tools, to learn the latest about stem cell transplantation and SCD from experts. Access the guidelines here.

Medicare Open Enrollment Begins October 15th: Tips on What You Need to Know from the PAF Sickle Cell CareLine

Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It’s important to make the right decisions when it comes to picking the best plan and understand the available options that could impact the critical care you need. Changes made during the open enrollment period, October 15th through December 7th, will take effect January 1st of 2022. Now is the time to start to think about Medicare coverage and what that will look like in 2022, by  carefully reviewing current Medicare coverage and noting any upcoming changes  to treatments or therapies, tests, or medications needed. Decide if your current Medicare coverage will meet the needs for the year ahead or if changes are necessary. If you need help, PAF Sickle Cell CareLine can help.  Access the Sickle Cell CareLine here.

NHS Announces Deal for First New SCD Therapy in the UK in 20 Years

Earlier this month, the United Kingdom (UK) National Health Services (NHS) announced a new deal with Novartis to rollout their SCD therapy, Crizanlizumab, to eligible individuals living with SCD in the UK. Read the NHS’ official press release here.

The Be The Match® Jason Carter Clinical Trials Search and Support team is proud to announce that an all-new “Featured Trials Program” is now available on their website. This program offers a great opportunity for researchers to have their trials featured prominently on the Be The Match website for increased visibility and promotion. Interested parties are encouraged to submit an application to have their trials featured through the program. Apply here.

Be The Match Sickle Cell Connect and Free Warrior Package  

Sickle Cell Connect aims to connect sickle cell warriors with the resources and support to learn more about SCD and empower them to take charge of treatment options. Through this effort, Be The Match hopes to build awareness of SCD, empower people living with the disease, grow the Be The Match registry, and ultimately save lives. Under this effort, Be The Match has created a free Warrior Package with useful resources and tools on SCD for caregivers and people living with SCD. Sign-up to receive the  Warrior Package here.

APHON Releases Hematology Provider Needs Assessment Survey  

To understand what would best serve our members, the Association of Pediatric Hematology/Oncology Nurses (APHON) is asking for participants to complete the hematology provider needs assessment survey. This survey will help inform what content APHON develops as part of a hematology provider program. Share your insight and complete the survey here.

HHS Office of Minority Health Updates SCD Website with New  Awareness Materials 

SCD affects approximately 100,000 people in the United States. Despite the important strides made in caring for people living with the disease, there continues to be a need to increase awareness and educate providers, caregivers, and communities about ways they can support people living with sickle cell disease. To help spread SCD awareness,  the U.S. Health & Human Services (HHS) Office of Minority Health (OMH) recently updated their SCD Website with new materials, including a Social Media and Outreach Resources toolkit and new infographics in English and Spanish. Visit the website here.

American Red Cross Launches New SCD Initiative

The American Red Cross recently launched a national sickle cell awareness and screening campaign to reach more blood donors and improve SCD care. Through this initiative, the American Red Cross is working with community leaders and other partners to encourage SCD awareness and advocacy through enhanced blood donations. Learn more about the initiative here.

CVS Takes Aim at Health Inequities Starting with Sickle Cell and HIV 

CVS Caremark is working to advance health equity by addressing sickle cell. CVS is launching initiatives to significantly increase access to hydroxyurea, improve adherence among people already taking hydroxyurea, and expand sickle cell trait testing to identify people at risk more quickly. Read more here.

BNCDF Accepting Abstracts on SCD for 1st National Non-Communicable Diseases Conference for Bangladesh 2021  

The Bangladesh Non-Communicable Diseases Forum (BNCDF) is organizing the 1st National NCDs Conference for Bangladesh. This virtual conference will take place from December 18 to 21, 2021; however, pre-conference workshops are already underway! Learn more about the conference here.


TIF’s 1st Global Annual IASG Meeting (10/22) 

The Thalassaemia International Federation (TIF) established the International Active Sickle Cell Group (IASG) in 2019 to promote sickle cell advocacy and patient engagement at national, continental, and international levels, such as Ministries of Health, European Commission, European Parliament, European Medicines Agency, and World Health Organization. The IASG will be holding its 1st Global Annual IASG meeting on Friday, October 22, from 8:00am-10:00am ET. During the meeting, SCDC Research & Clinical Trials Working Group Co-Chair Sam Kay will provide a brief presentation on the SCDC’s current activities. This meeting is free and open to the public.

Congressional Briefing on Reproductive Health Care for Women with SCD (10/28) 

The American Society of Hematology (ASH), American College of Obstetricians and Gynecologists (ACOG), Association of Maternal & Child Health Programs (AMCHP), and Sickle Cell Disease Association of America (SCDAA), Foundation for Women & Girls with Blood Disorders (FWGBD), and Sickle Cell Reproductive Health Education Directive (SC RED) will be co-sponsoring a virtual congressional briefing entitled, “Their Lives Depend on Us: Rising to the Challenge of Providing High Quality, Evidence-Based Reproductive Health Care for Women with Sickle Cell Disease (SCD)” on Thursday, October 28, 2021, 2:00 p.m. – 3:00 p.m. ET.  This briefing will present an overview about the current state of reproductive health care for women with SCD, a personal story of a mother’s pregnancy journey with the disease, and a presentation of proposed policy strategies to improve the outcomes. Register to attend the congressional briefing here.

AABB and Georgia Health Policy Center Webinar on “Building Diversity in the Blood Donor Pool to Meet the Needs of Patients” (10/28) 

AABB and Georgia Health Policy Center are organizing a program moderated by the American Red Cross Executive Medical Officer and SCDC member, Dr. Yvette Miller, on the transfusion needs of individuals living with SCD and ways to recruit donors of best-fit. The webinar will take place October 28, from 2:00-3:15pm ET. Learn more about the program here.

SCAGO SCD Summit (11/5-11/6)

The Sickle Cell Awareness Group of Ontario (SCAGO), in collaboration with the teams from McMaster Medical Centre and SickKids hospital, will be hosting its accredited SCD Summit from November 5 to 6, 2021. This virtual event will bring together the SCD patient community, health care providers and health system leaders, researchers, and advocates to discuss how all stakeholders can ensure equitable care, reduce stigma, and improve health outcomes for people living with SCD. Register to attend here.

NAFDAC Impact Africa Summit (12/1-12/3; Contact Organizers by 10/31) 

The Nigerian National Agency for Food and Drug Administration and Control (NAFDAC) is hosting the 2021 Impact Africa Summit, themed “Building Sustainable Capacity for Clinical Research through Partnerships in Africa”. This summit is projected to be one of the most high-level conferences in pharmaceutical R&D and clinical trials in Africa. The target audience is global research and healthcare stakeholders, including clinical research and biopharma organizations, regulatory bodies, patient advocacy groups, heads of academic institutions, health-tech innovators, and government officials. This year’s event will be hosted from December 1 to 3, 2021 at the prestigious Lagos Oriental Hotel Nigeria. To express your interest in attending the Summit, email stanleyboampong@impactafricasummit.org or call +2349131874264 before October 31, 2021.  


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