• Their team has two presentations at American Society of Hematology (ASH) Annual Meeting 2021 

  • Team's abstract titled "The Impact of Same Day Infusion Treatment Protocols for Uncomplicated Vaso-Occlusive Crises within an Embedded Sickle Cell Care Model" was accepted for presentation as a poster (Stefanie Sacknoff, PA will be presenting) 

  • Dr. Gopal's application titled "Establishing same day infusion treatment protocols for uncomplicated sickle cell vaso-occlusive crises utilizing a telemedicine platform" was selected for presentation at the ASH Choosing Wisely Campaign presentation 

• Held their first team building activity in honor of sickle cell awareness month 

• Started a series of education modules for the infusion nurses focused on day infusion protocols 

• Piloted a collaboration with the emergency department (ED) physicians to develop individualized pain management plans for patients presenting with crises to the ED 

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. 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: November 4, 2021; 12:00-1:00PM (PST) 
Topic: Sickle Cell Disease & Pregnancy 
Presented by: Esteban Gomez, MD- Center for Inherited Blood Disorders 

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

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! The Sickle Cell Community Consortium’s inaugural Caregiver Summit will be held virtually Nov. 12–14, 2021. The event is being hosted in partnership with Cleverly Changing, the Parent 2 Parent initiative, and members of the sickle cell disease (SCD) community nationwide. Topics will include mental health and self-care, disease education and management, medical resources and care access, and SCD research and treatments. 

Supporters and healthcare and industry professionals are also invited to register for the Caregiver Summit. 

To learn more, click here  

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! NICHQ's Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Highlights Need for Improved Sickle Cell Disease Care. Through NICHQ's 2017-2021 Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), they worked with five regional teams from across the country to improve coordination and service delivery for children and adults living with sickle cell disease, enhance access to services, and improve and expand patient and provider education. Upon completion of the project, NICHQ delivered a comprehensive report to Congress detailing the program outcomes and findings. 

Read the Impact Statement for project highlights from the 2017-2021 SCDTDRCP Report to Congress.  

Access the full Report to Congress, including the Model Protocol and Compendium of Tools and Resources. 

New! Members of the U.S. Senate, including those from the Sickle Cell Data Collection (SCDC) states, provided signed support for implementing the Sickle Cell Research, Surveillance, Prevention, and Treatment Act. The legislation requested $25 million for the SCDC program in the FY2022 federal budget.  

To learn more about the SCDC, click here 

New! Seeking to improve the health and life quality of underserved sickle cell disease communities internationally, Global Blood Therapeutics (GBT) has established The GBT Foundation.  

The GBT Foundation will fund programs from nonprofit organizations 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. 

To read the full press release, click here 

• The National Council for Mental Well Being has created a directory of resources for addressing health equity and racial justice in communities.  Learn more here.   

• The White House released the first-ever National Strategy on Gender Equity and Equality. Read the full strategy here.  

New! Sickle Cell Data Collection (SCDC) Resources:  

• A new fact sheet, “5 Steps to Safer Blood Transfusions” was added to CDC’s “Steps to better health for people with sickle cell disease” toolkit. In addition, the toolkit is now available in Spanish. 

• SCDC California published a new data brief highlighting emergency department utilization among those with SCD in the state and factors that may be associated with higher utilization. 

Starting November 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. 

New Job Listing! 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.