Networking California for Sickle Cell Care: The Center for Inherited Blood Disorders and the Sickle Cell Disease Foundation (SCDF) established a network of sickle cell disease centers in the local health jurisdictions of Alameda, Fresno, Kern, Los Angeles, Sacramento, San Bernardino, and San Diego to provide access to specialty care and improve quality of care for adults with sickle cell disease; support workforce expansion for coordinated health services; conduct surveillance to monitor disease incidence, prevalence, and other metrics; create a public awareness campaign; and provide fiscal oversight of the resources.
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Pacific Sickle Cell Regional Collaborative: The Center for Inherited Blood Disorders (CIBD) and the University of California San Francisco Benioff Children’s Hospital, Oakland (UCSF) are leading the Pacific Sickle Cell Regional Collaborative (PSCRC), which engages expert sickle cell disease (SCD) clinicians, health departments, community-based organizations (CBOs), health professions associations, federal government partners, public health policy, and epidemiology throughout 13 states.
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In this Edition of the Sickle Cell Connections Newsletter, Learn About:
- PSCRC & NCSCC Regional Updates
- Clinical Education
- Reports
- Resources
- Regional Team Member Spotlights
- Sickle Cell Employment Opportunities
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PSCRC & NCSCC REGIONAL UPDATES:
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Loma Linda University (LLU) NCSCC Sickle Cell Clinic Updates:
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Expanded clinic operation to two half-days per month. The clinic now incorporates hematology, pain management, behavioral health, family medicine residents, and community health worker services. It will expand to include a nurse practitioner for primary care and a social worker / interns for social services.
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Completed Sickle cell 101 educational sessions for their east campus and advanced urgent care nursing teams. Planning to deliver quarterly educational sessions moving forward and expanding to the Medical center and ambulatory infusion center nursing teams as well.
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Established a bridge from inpatient to outpatient care through the integration of a Community health worker in the discharge planning process and through inpatient rounding.
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Currently working to establish same day / regular infusion services for their patients at their Ambulatory Infusion Center.
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Completed EMR department build and is currently working on automation opportunities to promote the clinic and refer patients into the clinic from the inpatient side.
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In November 2021, Center for Inherited Blood Disorders (CIBD) began hosting students from the Charles R. Drew University of Medicine & Sciences Nurse Practitioner Program. These students are part of the NCSCC workforce development program. The students come with a keen interest in learning more about how to care for people living with Sickle Cell Disease. CIBD is excited for this addition to their workforce development program where they host Physician Assistant Students, Hematology Fellows and Genetic Counseling students as well.
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Oregon Health Sciences University (OHSU) Update: The OHSU team is excited to announce they have successfully created, funded, and filled a brand new position at OHSU that focuses on providing a high-quality transition from pediatric to adult medicine for their patients living with a hemoglobinopathy, namely sickle cell and thalassemia. Mortuma Murry, DNP, worked with OHSU during his Doctorate in Nurse Practitioner program and were able to hire him as a colleague and peer.
To learn more about Mortuma Murry, DNP – click here
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Tracking California Updates:
- The California SCDC team contributed to a Special Communication in JAMA Health Forum in October, Improving Outcomes for Patients With Sickle Cell Disease in the United States Making the Case for More Resources, Surveillance, and Longitudinal Data, led by Dr. Julie Kanter of University of Alabama.
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This review discusses why systematic data collection for SCD through population- wide surveillance programs can help to 11 facilitate progress in treatment. It also explores the importance of having both a longitudinal clinical registry and a national surveillance program to improve resource utilization, clinical outcomes, and provide an equitable foundation for care. Click here to read the review
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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. Project ECHO calls occur on a monthly basis as a one-hour video conference that includes case presentation, didactic, and review.
The PSCRC Project ECHO Series will resume in January 2022.
You can register for all upcoming Project ECHO calls and view past recordings directly on the PSCRC website
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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.
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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
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Networking California for Sickle Cell Care (NCSCC) released it’s 2nd Annual Report. The NCSCC Year 2 Report includes progress updates on their efforts to build a network of clinics composed of knowledgeable providers and community health workers to meet the critical need for access to care, preventative monitoring, and state of the art treatment for adults with SCD in California. It also reports on initiatives that strengthen SCD specific surveillance, outreach, and the workforce of SCD literate clinicians and community health workers, all vital to sustain systems level care improvements.
To view all NCSCC Annual Reports, visit the NCSCC website here
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View the National Institute for Children’s Health Quality (NICHQ) Webinar on Connecting Providers and Community Based Organizations to Improve SCD Appointment Attendance.
To access this recording and previous recordings, click here
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View the Sickle Cell Data Collection’s (SCDC) webinar on Community Engaged Education Materials for SCD Gene Therapy.
To access this recording and previous recordings, click here
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View CDC’S Public Health Webinar Series on Blood Disorders two latest recordings:
To view previous recordings, click here
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Office of the Assistant Secretary for Health (OASH) Office of the Surgeon General released the new issue of Public Health Reports, the official journal of the Office of the Surgeon General and the U.S. Public Health Service, which has been recently published online. The newest issue includes articles on social determinants of health among Latinos diagnosed with HIV, racial and ethnic disparities in maternal vaccine knowledge, COVID-19 vaccination among refugees, and more. To learn more, click here
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REGIONAL TEAM MEMBER SPOTLIGHTS
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Jennifer Fields, MPH
Sickle Cell Disease Foundation
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1) What is your current role in the field of Sickle Cell Disease?
2) How long have you worked in the field of Sickle Cell Disease?
3) Why is Sickle Cell Disease important to you?
4) What positive system changes have you seen in the area of Sickle Cell Disease?
5) What changes in the provision of care of those living with Sickle Cell Disease would you like to see in the future?
6) Can you share a few personal fun facts about yourself?
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Strategy Consultant
9 Years
Addressing the needs of people living with SCD is important to me because I personally live with SCD and have been impacted by SCD through the love and loss of very important people in my life. There is a huge gap in support and resources for a population that has been underserved for over a century. To use my gift of health in very meaningful way, allows me to be a liaison between healthcare, biopharma and the public health arenas with both a personal and public health approach.
There has been a new and tremendous focus placed on improved access to therapies and treatment for people with SCD. This is unprecedented. My hope is that the momentum continues to increase in a positive direction for the sake of all those who are impacted by this disease.
I would like see normalcy within the routine care and procedures for treating people with SCD; biases and stigmas eliminated; access to resources to support meaningful and quality life growth and an agreeable agenda where everyone who has an interest in SCD are working together with pure intentions and a pure heart to improve patient lives.
I love horses, and intend to take riding lessons in my adult life in 2022 with my son.
If I could have a dream vacation, I’d spend a month island hopping in Hawaii and an additional month touring Europe.
I almost applied and auditioned to The Juilliard School for Music in Middle school at the recommendation of my piano teacher who was a friend of a director there. I couldn’t quite get the green light from my mom to live so far from home.
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SICKLE CELL EMPLOYMENT OPPORTUNITIES
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UCSF Benioff Children's Hospital Oakland is hiring for the position: NCSCC Health Care Strategist. View full job listing here
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 listserves 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.
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INTERESTED IN SHARING YOUR UPDATES IN THE NEWSLETTER?
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Email Priscilla Salceda at PSalceda@c3dibd.org by Monday, December 20, 2021 to include your information in the next newsletter.
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