New!  Nature released an article, ‘No adult left behind: bridge the health-care gap for sickle-cell disease’ which highlights the reduced child mortality from sickle cell disease but the lack thereof for adults and the need for comprehensive care. This article referenced the funding provided by the state of California for the Networking California for Sickle Cell Care (NCSCC) Initiative. Additionally, Dr. Marsha Treadwell, PSCRC’s CO-PI's comments are included in this article and refer to the need for transition programs for persons with sickle cell disease.

To read this article, click here

New! The Sickle Cell Disease Foundation (SCDF) was featured in an article on Sickle Cell Disease News which highlighted the $1 Million grant to educate SCD patients living in the western U.S. about the COVID-19 vaccine and assisting them in accessing vaccination programs.

To read this article, click here

New!  The UCSF Benioff Children’s Hospital Oakland will be hosting a Sickle Cell Disease Boot Camp in the fall for physicians and advanced practice providers. At this time, the boot-camp date and time is to be determined.  

Please email Beth Anne Martin at Beth.Martin@ucsf.edu to be added to the waitlist.

New! PSCRC Project ECHO (Extension for Community Healthcare Outcomes) is a telementoring series designed for clinical providers to bridge the gap between a network of local providers and pediatric and adult SCD specialists.  The Project ECHO calls occur on a monthly basis as a one-hour video conference that includes case presentation, didactic, and review. 
 
The next PSCRC Project ECHO Telementoring session: 
 
Date & Time: Friday, October 15, 2021; 12:00-1:00PM (PST) 
Topic: ED Care in sickle cell disease 
Presented by: Neha Bhasin, MD, UCSF Benioff Children’s Hospital Oakland 

You can register for all upcoming Project ECHO calls and view past recordings directly on the PSCRC website

New! SAPPORT is offering two new opportunities for APPs: 

• An additional monthly ECHO telementoring series hosted by  of Johns Hopkins University, on the 3rd Thursday of each month 9:00AM-10:00AM, PST 
• A certificate training program that includes an online curriculum and a 2-4 week observership 

To formally enroll to attend the additional monthly ECHO telementoring session for APPs hosted by Johns Hopkins University OR the training program please register/apply here 

New! Ask Congress to Fund Sickle Cell Research & Awareness! Congresswoman Barbara Lee (D-CA) is leading Congressional efforts to increase awareness and funding for sickle cell, which disproportionally impacts Black and Latino communities. Take action here and join UCSF in asking Congress to support sickle cell research and help ensure access to testing and lifesaving information. Your advocacy is timely as September honors Sickle Cell Awareness Month. Submit your email in support using this customizable template, and find other ways to get involved and support the sickle cell community at tiny.ucsf.edu/sicklecell. 

New! California is poised to start what could be the biggest expansion of community health workers in state history. The 2021-22 budget establishes community health worker benefits within the Medi-Cal program, allowing CHWs to be paid for providing benefits and services to Medi-Cal enrollees. 

To read the full article, click here

New! The Sickle Cell Data Collection (SCDC) program, CDC’s SCD surveillance (health monitoring) program has expanded in the past two years and now collects health information from eleven states. Currently, data are available only for California and Georgia.

View California and Georgia data. 

CDC’s SCDC program gathers health information from multiple sources to determine how many people live with the condition in a particular state. The SCDC program helps better understand SCD in five key areas: where people with SCD live, information on transitioning from pediatric to adult care, the challenges of identifying SCD among Hispanic patients, the health problems that patients experience as they age, and the use of healthcare services.  

New! The National Institute for Children's Health Quality (NICHQ) released it's Sickle Cell Disease Treatment Demonstration Program (SCDTDP) 2021 Report to Congress. The Pacific Sickle Cell Regional Collaborative s one of the five SCDTDP regions. 

To view/download the 2021 NICHQ SCD Report to Congress, click here

New! Clinical Trial: Sickle Cell Anemia: Therapeutic Response Evaluation and Adherence Trial (TREAT Study). This study, sponsored by the Children's Hospital Medical Center, Cincinnati, seeks children and youth ages 6 months to 21 years old with a diagnosis of sickle cell anemia. The study will be carried out at the Cincinnati Children's Hospital Medical Center in Cincinnati, Ohio. 

To learn more about this clinical trial, click here  

New! Global Blood Therapeutics (GBT) has established The GBT Foundation to fund programs that will support people within the SCD community and beyond through education, empowerment, improved healthcare access and enhanced health equity. The GBT Foundation will fund programs from nonprofit organizations around the world that have the potential to create meaningful and sustainable change, and is currently accepting grant proposals in four core areas of focus:

•  Increasing SCD education and awareness for communities impacted by SCD to build knowledge of the devastating physical, social, mental and societal effects of this genetic blood disorder.
• Empowering people with SCD, caregivers and others in the SCD community to help improve the lives and care of the community.
• Improving access to healthcare in SCD to help those living with SCD receive the high-quality health services they need and deserve.
• Enhancing health equity through innovative and sustainable solutions that help vulnerable communities have the chance to reach their full health potential without social obstacles. 

New! The Office of Minority Health shared resources to celebrate September, Sickle Cell Awareness Month: 

• Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, published by the National Academies of Sciences, Engineering, and Medicine. This report, available for free, discusses disparities in SCD care and provides a strategic framework for the future. To view this title and find additional information, search the online catalog. 

• Join the National Heart, Lung, and Blood Institute (NHLBI) in observing Sickle Cell Awareness Month 2021 with the overarching theme, "Advancing Sickle Cell Disease Research." To learn more, click here

New! The Centers for Disease Control and Prevention (CDC) Has Many Activities That Use Data to Learn More About SCD, See below for the list of Resources to learn more about sickle cell disease.

Publications:

• Aika Aluc, Mei Zhou, Susan T. Paulukonis, Angela B. Snyder, David Wong & Mary M. Hulihan (2020) Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005–2016, Pediatric Hematology and Oncology, 37:8, 747-751, DOI: 10.1080/08880018.2020.1779886Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach. 

• Emily E. Johnston, Oyebimpe O. Adesina, Elysia Alvarez, Heather Amato, Susan Paulukonis, Ashley Nichols, Lisa J. Chamberlain, and Smita Bhatia.Journal of Palliative Medicine.Jan 2020.24-32.http://doi.org/10.1089/jpm.2018.0649 

• Kayle, M, Valle, J, Paulukonis, S, et al. Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease. Pediatr Blood Cancer. 2020; 67:e28152. https://doi.org/10.1002/pbc.28152 

• Payne AB, Mehal JM, Chapman C, Haberling DL, Richardson LC, Bean CJ, Hooper WC. Trends in Sickle Cell Disease-Related Mortality in the United States, 1979 to 2017. Ann Emerg Med. 2020 Sep;76(3S):S28-S36. doi: 10.1016/j.annemergmed.2020.08.009. PMID: 32928459; PMCID: PMC7598427. 

• Wong TE, Valle J, Paulukonis S. Concurrent use of hydroxyurea and deferasirox in Californians with sickle cell disease. Health Sci Rep. 2021;4(3):e323. Published 2021 Jul 14. doi:10.1002/hsr2.323

Data Briefs:

• Healthcare Utilization for Vaso-occlusive Episodes by People with SCD
• Hydroxyurea Use Among Medicaid Beneficiaries with SCD
• Medicaid Coverage Patterns for People with SCD
• Older Adults Living with SCD
• Are Socio-economic Factors Related to Emergency Department Utilization for Californians with Sickle Cell Disease?

• Hospital and Emergency Department Utilization for People with SCD in California and Georgia: Data from the SCDC program was used to look at the number of hospital admissions, emergency department visits, 30-day re-admissions, and payers of this healthcare use

Starting October 2021, we will be highlighting a member from the NCSCC or the PSCRC in this monthly newsletter. We will ask the same questions of each highlighted member and ask for a photo to include in the newsletter. This will allow members to get to know one another more on a professional and personal level by sharing why you do this work, what changes you want to see in the provision of Sickle Cell care, and some fun facts about yourself. When you are selected, you will receive an email from Jolene Bastas from CIBD, so be on the lookout in the coming months. 

Please send any Sickle Cell Disease job openings to Jolene Bastas, MSW, CIBD Project Management Consultant at jbastas@c3dibd.org and they will be disseminated to the listservs of both the PSCRC and NCSCC initiatives. You may also request that they are included in this monthly newsletter. 

If you know someone interested in working in Sickle Cell Disease, please send their resume to Jolene Bastas (information above) to disseminate it amongst both networks.