The Bloodline Newsletter: Spring 2019
Mission: To improve quality of life, life expectancy, and health among people living with sickle cell disease (SCD).
- SCDC California’s Action Plan 2018 Executive Summaryexternal icon serves as a roadmap for changes in health policy and delivery, provider training, and support for patients and families.
- “Stepping Up into Adult Care: The Sickle Cell Trevor Thompson Transition (ST3P-UP) Project”external icon (February 2019): Principal Investigators, Dr. Ifeyinwa (Ify) Osunkwo, Carolinas HealthCare System, and Dr. Raymona Lawrence, Georgia Southern University, presented this final webinar in a three-part miniseries on adolescent transition from pediatric to adult health care.
- “What’s New at the Sickle Cell Disease Association of America (SCDAA)”external icon (April 2019): Ms. Beverley Francis-Gibson, SCDAA President and CEO, discussed changes at the national organization to advocate for people affected by sickle cell conditions.
- SCDC’s policy memo, Understanding Sickle Cell Disease: CDC’s Role in Surveillance, Education, and Awareness, demonstrates how new and timely national data can allow for better understanding of and improved health outcomes for SCD.
SCDC Georgia published, “Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Disease” in Public Health Reportsexternal icon.
- SCDC Georgia received data for the first time from Memorial Children’s Hospital in Savannah, Georgia, and new data from the Georgia Medicaid program. Additionally, newborn screening data from 2004 through 2016 was geocoded by address to enable mapping and GIS analysis.
- SCDC Georgia responded to requests for SCDC data from a variety of sources, including:
- Three graduate students conducting research projects.
- A research epidemiologist at Children’s Healthcare of Atlanta, who needed data for an abstract, “Sharing Data, Sharing Care: A Public Health-Healthcare Partnership for Improved Sickle Cell Disease Research and Surveillance Using a Population-based Clinical Database,” which was accepted for presentation at the Council for State and Territorial Epidemiologists conference.
- A regional SCD advocacy group interested in updated incidence data by year and diagnosis for Muscogee County, Georgia.
- SCDC California has clinical case report data from new partners, Children’s Hospital of Orange County, University of California San Diego/Rady Children’s Hospital-San Diego, and Stanford University/Lucille Packard Children’s Hospital, and is expecting four additional new data files this spring from other clinical partners.
- SCDC California responded to requests for SCDC data from a variety of sources, including:
- A team of researchers working on a grant proposal to better understand the links between SCD and cancer.
- Community-based organizations that are developing policy messages on Hispanic/Latinx people living with SCD and access-to-care challenges for adults in Southern California.
- SCDC data were used to develop an abstract, “Newborn Screening Data for Sickle Cell Disease in California and Georgia, 2004—2016: Implications for Health Interventions,” which was submitted to the Foundation for Sickle Cell Disease Research’s 2019 Sickle Cell Disease Research and Educational Symposium.
Presentations and Meetings
- SCDC California’s Susan Paulukonis is serving on an ad-hoc committee formed by the National Academies of Sciences, Engineering, and Medicine (NASEM) to develop a strategic plan and blueprint for addressing SCD in the United States. This project was commissioned by the Department of Health and Human Services’ Office of Minority Health; the committee’s charge and roster are available hereexternal icon.
- SCDC Georgia’s Angie Snyder spoke at a panel discussion titled, “How Public Policy Can Help Shape the Future of Sickle Cell Disease,” held at the National Newspaper Publishers Association’s Black Press Weekexternal icon in Washington, D.C.
- An Emory University physician shared SCDC data in a joint grand rounds presentation on transfusion practices in sickle cell and thalassemia at Columbus Regional Hospital. The physician contextualized the talk with 10 years of SCDC data including healthcare utilization for patients with SCD who received care from that hospital.
- SCDC’s Mary Hulihan presented “Sickle Cell Disease: Epidemiology, Surveillance, and Research in the United States,” an overview of the SCDC program, and included ideas for future expansion of this work, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” during the first public session of NASEM’s committee, held February 21, 2019.
- Mary Hulihan attended “Coffee with the Director” on April 25, 2019, where she informed Dr. Robert Redfield, Director of the CDC, about the SCDC program and its goals.
- SCDC data were used to inform Mary Hulihan’s keynote presentation during the Emergency Department Sickle Cell Coalition’s summit on May 9, 2019.
In the News
- Sickle cell patients finally have a clinic in South Los Angelesexternal icon
- More on the trial aiming to cure sickle cellexternal icon
- 8-year-old Orlando boy donates bone marrow to his older brother, sister, saving their livesexternal icon
- Breakthrough BME study could lead to new treatments for sickle cell diseaseexternal icon
- Local woman shares how most commonly inherited blood disorder impacts her daily life, her familyexternal icon
- Johns Hopkins researchers offer new protocol to potentially cure sickle cell diseaseexternal icon
- Va. mother turns to social media to find a new kidney for her 12-year-old sonexternal icon
- ’60 Minutes’: Kissimmee woman astounds millions with sickle cell recoveryexternal icon
- Jordin Sparks & Dr. Venée Tubman – Raising awareness for life with sickle cell diseaseexternal icon
- Sending a child with sickle cell disease off to collegeexternal icon
- UMN study shows impact of opioids on pain and survival in sickle cell diseaseexternal icon
- Pfizer executive outlines vision for treating SCD, other rare diseasesexternal icon
- California and Georgia aggregate 2005 SCDC data were made available in February 2019, including patient demographics, hospitalizations, and emergency department visits. California’s 2010—2016 SCDC data will be made available here in June 2019.
- CDC issued a clarificationpdf iconexternal icon on its Guideline for Prescribing Opioids for Chronic Pain in patients with SCD. Read the commentary, No Shortcuts to Safer Opioid Prescribingexternal icon, which encourages implementation of the Guideline to be consistent with its recommendations.
- A new notice of funding opportunity (NOFO) forecast: Capacity Building for Sickle Cell Surveillance (DD19-1906)external icon. This NOFO allows for new states to build capacity for SCDC program implementation. Click “Subscribe” on NOFO page to receive updates about this funding opportunity.
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