SCDC Update
New SCD Legislation Introduced: Sickle Cell Care Expansion Act
On March 22, 2022, U.S. House Representatives Charlie Crist (D-FL) and Barbara Lee (D-CA) introduced H.R. 7177, the Sickle Cell Care Expansion Act. This legislation would expand the National Health Services Corps (NHSC) scholarships and loan repayment assistance program to include financial incentives for health care providers to specialize in benign hematology and care for people with sickle cell. Read the official press release here.
FDA Draft Guidance: Diversity Plans to Improve Enrollment of Participants from Underrepresented Racial & Ethnic Populations in Clinical Trials
The U.S. Food & Drug Administration (FDA) recently released draft guidance recommending that sponsors developing medical products submit a diversity plan to improve enrollment of participants from underrepresented racial and ethnic populations in the United States in clinical trials. Learn more here.
SCDAA Program: Get Connected Patient Powered Registry
The Sickle Cell Disease Association of America (SCDAA) developed its Get Connected Patient Powered Registry to collect and cite the number of people living with SCD worldwide and identify the regions where they live. The goal is to demonstrate the significance of SCD as a global public health issue, and to keep SCD at the forefront of health discussions among key decision makers. Access the registry here.
ASH Bringing Sickle Cell Disease to Life Podcast: Season 1 Finale
The American Society of Hematology (ASH) recently launched a new podcast series entitled, Bringing Sickle Cell Disease to Life! In the final episode of Season 1, which was released last Friday, April 15, Dr. Courtney Fitzhugh shared her journey on becoming a physician scientist with a lab at the National Institutes of Health (NIH). Listen to the podcast and learn how groundbreaking research is translated into patient care. Listen to season 1 and subscribe to the podcast series here.
IASCNAPA: Scholarship Program for SCD Warriors
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a college scholarship program to assist individuals living with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. Applicants for IASCNAPA’s scholarships must be enrolled in or have been accepted by a recognized and accredited post- secondary school, including college, university, trade school, or other institution of higher learning in the US. Learn more here.
AABB News Article: “Diverse Donor Pool Saves Lives”
The Association for the Advancement of Blood & Biotherapies (AABB) published a news article titled, “Diverse Donor Pool Saves Lives.” This article emphasizes that having a diverse blood donor pool equips United States blood centers to more effectively serve the needs of the patients in their communities. Read the article here.
CDC Resource: Hemoglobinopathies: Current Practices for Screening, Confirmation, and Follow-Up
The Centers for Disease Control and Prevention (CDC) released a resource entitled, Hemoglobinopathies: Current Practices for Screening, Confirmation, and Follow-Up. This document explores current screening and diagnostic methods available that are employed by some screening and diagnostic laboratories. Learn more here.
ASH Updates Pediatric to Adult SCD Transition Resources with Reproductive Health Information
The American Society of Hematology (ASH) recently updated its Pediatric to Adult Hematologic Care transition tools, including the addition of reproductive health information to the sickle cell disease (SCD) clinical summary and SCD transition readiness assessment forms. These tools are designed to facilitate conversations between warriors, parents, and physicians during the care transition period. Learn more here.
Annals of Internal Medicine Article: “Clinical Pearls: Acute Pain Episodes in SCD”
Annals of Internal Medicine recently published an article by SCD Coalition member Dr. J.J. Strouse and colleague Dr. Amanda Brandow on treating acute pain episodes related to sickle cell. The article notes that acute SCD pain management should be prompt, compassionate, and individualized, per the American Society of Hematology (ASH) guidelines. Read the article here.
Sickle Cell Disease News Article: “How UK Hospitals Can Improve SCD Crisis Care”
Sickle Cell Disease News recently published an article entitled, “How UK Hospitals Can Improve SCD Crisis Care.” Written by SCD warrior Dunston Nicol-Wilson, the article highlights the need for improved hospital admissions and aftercare rehabilitation services to support the recovery of SCD warriors. Read the article here.
Be The Match Patient Support Center
The Be The Match Patient Support Center offers free counseling services to aid the SCD community. A licensed social worker can provide one-on-one counseling to warriors, caregivers, and family members. This service aims to help individuals manage living with blood cancer or blood disorder and cope with the blood or marrow transplant (BMT) process. Learn more here.
Medscape Medical News Article: “Rapper Educates on Hidden Pain of SCD”
Medscape Medical News recently published an article titled, “Rapper Educates on the Hidden Pain of SCD.” The article highlights Alidor Gaspar, a London-based rapper known for his gospel-inspired music, who has given a voice to SCD warriors in his recent music video. Learn more here.
Sick Cells Final Report: Hispanic Outreach Promoting Equity (HOPE) Project
Sick Cells recently conducted a qualitative research study to identify the needs of the Hispanic population living with SCD in the United States. The report emphasizes the growing population of Hispanic Americans living with SCD and individuals who identify as first-generation US citizens. Access the full report here.
SCAGO Webinar Recording: “Mental Health & SCD”
The Sickle Cell Awareness Group of Ontario (SCAGO) recently held a webinar to discuss mental health and SCD. In this session, Dr. Deji Ayonrinde and Dr. Bola Ola highlighted the current state of mental illness in the sickle cell community and ways to increase awareness and attention around the mental wellbeing of those diagnosed with sickle cell. Access the recording here.
Cayenne Wellness Center Program Launch: Free California SCD Mental Health & Wellness Services
On April 1, 2022, Cayenne Wellness Center launched its California SCD Mental Health & Wellness Program designed to meet the unique needs of the California sickle cell community by offering free mental health counseling, health coaching, and holistic health consultations to SCD warriors. Learn more here.
**SCD EVENTS**
IASCNAPA Webinar: “COVID-19 Outcomes Among Individuals with SCD”
The International Association of Sickle Cell Nurses & Professional Associates (IASCNAPA) is sponsoring a webinar on April 21, 2022, from 2:00pm-3:00pm ET. Dr. Ashima Singh, Assistant Professor in the Department of Pediatrics at the Medical College of Wisconsin, will discuss how COVID-19 impacts individuals with SCD compared to others. Register to attend here.
Martin Center 2022 Indiana Sickle Cell Conference
The Martin Center will hold its 2022 Indiana Sickle Cell Conference virtually on April 22, 2022, at 9:00am ET. The theme of the conference is “Reproduction and Intimacy.” Featured speakers include Dr. Wanda Whitten-Shurney, Dr. Kim Smith-Whitley and Teonna Woolford. Learn more here.
SCAGO Webinar: “COVID-19 & SCD”
The Sickle Cell Awareness Group of Ontario (SCAGO) will hold a webinar on COVID-19 & SCD on April 30, 2022, from 2:00pm-4:00pm ET. The program will highlight the disparity that exists with COVID-19, and the impact this is having on SCD warriors and the Black Community. Register to attend here.
SCD Coalition Webinar: “Global Warriors’ Access, Challenges, and Experiences with Sickle Cell Research”
In celebration of International Clinical Trials Day, and in continuation of a previous webinar on global access, the SCD Coalition will hold a webinar entitled, “Global Warriors’ Access, Challenges, and Experiences with Sickle Cell Research” on May 20, 2022 from 9:00am-10:45am ET. Save the date and look out for more information to come!
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 ceo@globalscd.org 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 more here.
**SCD & COVID-19 RESOURCES**
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