During the COVID-19 Public Health Emergency, CA’s Department of Health Care Services put in place temporary flexibilities for both Medi-Cal and CCS – California Children’s Services. The National Health Law Program and Family Voices’ newly updated fact sheet explains how to obtain medically necessary CCS qualified services, including CCS annual review, well child visits, high risk infant follow up, physical and occupational therapy, DME and supplies. The fact sheet is also available en Español. 

Sickle Cell Data Collection (SCDC) Updates: 

• CDC’s “Steps to better health for people with sickle cell disease toolkit”, which includes downloadable fact sheets and social media resources about the common complications of SCD and how people living with SCD can manage their health, is now available in Spanish and French. 

• SCDC Colorado conducted a short assessment to SCD stakeholders, including those living with SCD and their family members, healthcare providers, advocates, community-based organizations (CBOs), and policy makers. The purpose of the survey is to assess baseline knowledge about the epidemiology and healthcare utilization patterns of SCD. SCDC Colorado plans to administer the survey annually to guide communication, dissemination, and education efforts. Click here to complete the assessment if you live in Colorado. 

• SCDC California worked with the California Department of Health’s Genetic Disease Screening Program and Sickle Cell Anemia Awareness San Francisco to send out a short survey in March 2022 to hematologists in the state about their care of people living with SCD. If you live in California and want more information on how healthcare providers can provide important input to the state, please contact info@TrackingCalifornia.org 

Networking California for Sickle Cell Care’s co-principal investigator, Dr. Diane Nugent sat down with KCRA 3 to discuss the opening of the UC Davis Sickle Cell Clinic. Watch the full interview here. https://bit.ly/37RSQuK 

The Sickle Cell Disease Foundation (SCDF) is pleased to announce the opening of the Behavioral Health Department under the Direction of Carla Francisco, LCSW, MA. Along with other Behavioral Health Therapists on the SCDF team, she will provide mental health services to your patients at no cost. Please feel free to contact the Sickle Cell Disease Foundation at 909-743-5226 or 310-693-0247 for more information or to begin the process. All initial consultations are conducted on Fridays with an appointment between 11:00 am and 1:00 pm. 

SCDF is holding community health worker (CHW) continuing education series (CES) through May 25, 2022. See below for more Information: 

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 project ECHO session information is below:

Date: May 26, 2022
Time: 12-1:00PM (PST)
Topic: Hemoglobin SC Disease: Disease Variability & Management Considerations 
Speaker: Bindu Sathi, MD

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

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 

HHS’s Health Resources and Services Administration (HRSA) and Telehealth.HHS.gov are pleased to host a National Telehealth Conference bringing together public and private sector leaders to discuss telehealth best practices and lessons learned during the COVID-19 pandemic. Over the course of two days (May 16-17, 2022), experts in the field will examine the evolution of telehealth as part of the standard of care and the importance of its continued integration in an overall, integrated care delivery model. Register and find out more here 

CDC and the American College of Emergency Physicians (ACEP) will co-host the webinar, “Breaking down barriers to emergency department (ED) care for people with SCD” on June 16, 2022, 2:00pm–3:00pm EST. The webinar will feature a panel of people living with SCD who share their experiences with care in the ED. Create an account here to register (ACEP membership not required). Registration is free but limited to the first 1,000 people. 

Join Sickle Cell Anemia Association’s Advocacy & Empowerment Session #5 on ‘Art of Advocacy’ on May 14, 2022 11AM-1PM with presenter Eugene Canson, MPH. REGISTER HERE   

If you have any questions, please do not hesitate to reach out to SCAASF (415) 720-4458 or send an email to crisis@scaasf.org. 

Join CDC's Public Health Webinar Series on Blood Disorders for the 'Newborn Screening for Thalassemia in the United States: Why, How, and What You need to Know' on June 2, 2022 2:00-3:00PM (EST). 

Please preregister here. For more information please contact Cynthia Sayers: cay1@cdc.gov

Join the Centers for Medicare & Medicaid Services (CMS) for a Public Listening Session on the CMS Rural Health Strategy “Refresh” for CMS Regions 6, 9, 10 

Date: Thursday, May 12, 2022 Time: 6:00 – 7:30 p.m. EDT 

Register Here

Sickle Cell Data Collection California will host the webinar “COVID-19 outcomes among individuals with sickle cell disease” on May 12, 2022, 2:30pm–4:00pm EST. The webinar will focus on the COVID-19 outcomes among people living with SCD compared to those who do not have SCD. Risk factors for severe COVID-19 illness for the SCD population will also be discussed. Register here. 

In March, the American Society of Hematology (ASH) launched its first podcast on sickle cell disease (SCD), hosted by Dr. Wally Smith, Florence Neal Cooper Smith Professor of Sickle Cell Disease School of Medicine, Division of General Medicine, Virginia Commonwealth University. Listen to the entire first season of Bringing Sickle Cell Disease to Life, as he explores the history, disparities and bias of this disease, and shares promising news in the management and treatment of sickle cell. LISTEN TO SEASON ONE HERE 

Listen to the American Society of Hematology: Bringing Sickle Cell Disease to Life:  This podcast, hosted by Dr. Wally Smith, features interviews of diverse leading experts including researchers, physicians, and individuals living with sickle cell disease, exploring the history of the disease, the global impact and need for additional providers, disparity and bias in sickle cell disease, and promising news regarding the management and treatment of sickle cell disease. Click here to listen to the podcast. 

Stefanie Sacknoff, PA 

UCSD SCD Adult Clinic- Hillcrest 

San Diego, California 

1. What is your current role in the field of Sickle Cell Disease? 

Physician Assistant at UCSD Health Sickle Cell Comprehensive Center 

2. How long have you worked in the field of Sickle Cell Disease? 

2 years 

3. What positive system changes have you seen in the area of Sickle Cell Disease? 

While I have worked in hematology/oncology for 8 years, my exposure to sickle cell was minimal. In my short time serving the sickle cell community, it is evident we are experiencing a movement focused on improving access to quality, comprehensive care for this population that is long overdue. The two years that I’ve been working with this community have also been two unprecedented years outside of the clinic, and I can see that we as providers have an opportunity to make a substantial impact on how our patients experience healthcare. 

I am honored to be part of a team and network focused on improving the lives of sickle cell patients. At our center in particular, I have witnessed how the implementation of a same day infusion program for management of uncomplicated VOC’s can improve the quality of life of our patients. Since the program’s inception, we have been able to decrease the number of ED visits and inpatient admissions for our patients. We are also successfully managing 10 unique patients exclusively in the outpatient setting who had otherwise been seeking care in the ER and inpatient unit. 

There is no good time for a crisis. But the fact that patients can be managed over 2 hours in an outpatient infusion center rather than waiting hours in the emergency room is significant. It provides the opportunity for patients to continue living their lives with minimal interruption. 

4. What changes in the provision of care of those living with Sickle Cell Disease would you like to see in the future? 

Imagine being in excruciating pain, feeling sick and fatigued to the point that you feel you need care from an emergency room, only to arrive and simply be dismissed as a liar. That scenario may seem unfathomable to many of us, but it’s a regular occurrence for our patients. Stories from our patients about how they experience emergency care is a frequent source of frustration for me. 

It is no secret that racism and bias exist in our health system and our patients are at the center of this disparity. I am hopeful with continued efforts to educate existing and future healthcare professionals; we can change this narrative. Our patients deserve access to high quality, comprehensive, compassionate care without having to advocate for themselves. 

5. Can you share a fun fact about yourself? 

I love a good dining experience. My husband and I try and go to a new restaurant, cafe, brewery/winery, or coffee shop once a week. Great ambiance, delicious food and good 

company fills me with so much joy. When appropriate, we love bringing our black lab, Fisher. 

Loma Linda Job Opening: Program Manager (SW) for Sickle Cell 

Please send any Sickle Cell Disease job openings to Priscilla Salceda, MPH, Grants and Program Coordinator at psalceda@c3dibd.org and they will be disseminated to the list serves 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 Priscilla Salceda (information above) to disseminate it amongst both networks.