California Sickle Cell Resources

!!⏰ REMINDER ⏰!!

Don't miss next week's webinar: Sleep Disturbances in Sickle Cell Disease, Tuesday, July 30, 2024 from 10am-11:30am PST

Register to attend:
https://attendee.gotowebinar.com/regi.../2479335389088077662

Dr. Cecilia Valrie is an Associate Professor in the Department of Psychology at Virginia Commonwealth University in the Health Psychology PhD program - Dr. Valrie will share an overview of her knowledge on the prevalence, causes, and consequences of for people living with

attendee.gotowebinar.com

(CKD) is a significant complication in patients with , leading to increased mortality.

The California SCDC Program looked at Medicaid claims, vital records, emergency department, and hospitalization data from 2011 to 2020 to identify adults with SCD who also had CKD. We found that early screening and intervention for these adults is critical.

Of the adults with SCD and CKD in the study, 49% had no hematologist visits and 62% did not see a nephrologist. There was also a 39.5% mortality rate.

Read the full publication ➡️

Prevalence, Mortality, and Access to Care for Chronic Kidney Disease in Medicaid-Enrolled Adults With Sickle Cell Disease in California: Retrospective Cohort Study Background: Chronic kidney disease (CKD) is a significant complication in patients with sickle cell disease (SCD), leading to increased mortality. Objective: This study aims to investigate the burden of CKD in Medicaid-enrolled adults with SCD in California, examine differences in disease burden bet...

Early preventive services and specialized care help prevent complications and death for children with .

A multi-state Sickle Cell Data Collection (SCDC) study examined patterns of coverage among children with SCD in the first 3 years of life, a critical period of time to improve access to high-quality pediatric care. Learn more about the study ➡️ https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821178

Being enrolled in Med-Cal early and having continued coverage helps with access to life-saving services and coordinated care.

SCD is a qualifying trait to enroll in California Children's Services: https://www.dhcs.ca.gov/services/ccs

Medi-Cal for Kids & Teens also provides free services for kids from birth to age 21. https://www.dhcs.ca.gov/services/Medi-Cal-For-Kids-and-Teens/Pages/home.aspx

In observance of National Minority Mental Health Awareness Month, the HHS Office of the Assistant Secretary for Health, the Substance Abuse and Mental Health Services Administration (SAMHSA), and the Office of Intergovernmental and External Affairs are hosting a virtual event next week called: “The Thriving Warrior: Supporting the Mental Health Needs of Individuals Living with Sickle Cell Disease”.

In this panel, participants will hear warriors discussing their experiences and challenges in addressing mental health and building self resiliency, self-care, and support systems.

Date & Time: Monday, Jul 22, 2024, 3:00 PM in Eastern Time (12pm Pacific Time)

Register ➡️ https://www.zoomgov.com/webinar/register/WN_Vsar69EpSl6sVKI-5izZ2Q

📢 Don't miss our next webinar: Sleep Disturbances in Sickle Cell Disease, Tuesday, July 30, 2024 from 10am-11:30am PST 📢

Dr. Cecilia Valrie is an Associate Professor in the Department of Psychology at Virginia Commonwealth University in the Health Psychology PhD program - Dr. Valrie will share an overview of her knowledge on the prevalence, causes, and consequences of for people living with

Register for the webinar ⬇️:
https://attendee.gotowebinar.com/register/2479335389088077662

Don't miss this upcoming masterclass - Anemia Falciforme: La Experiencia Latina (Sickle Cell Anemia: The Latino Experience)

Date: July 13, 2024
Time: 12 pm to 1:30 pm EST (9am-10:30am PST)
bit.ly/SCDAA-Masterclass

Sickle Cell Anemia Awareness SF will be hosting the KMJ Warrior Walk Health and Wellness Expo in Oakland next weekend on June 29, 2024 from 9:30am-1:30pm

More details and registration can be found at the link ⬇️:
https://www.scaasf.org/event-details/scaa-oakland

Happy and !

In honor of World Sickle Cell Day, drop an emoji in the comments to describe your connection to sickle cell disease. Are you a (answer with all that apply to you)...

🩸 SCD Warrior
🩺 Medical Provider
👩🏾‍⚕️ Health Care Worker
🫶🏾 Caregiver
👏🏾 SCD Advocate
🫂 Friend has SCD
🏠 Family member has SCD
💔 loved one/friend/family member passed from complications of SCD

Did you know? Sickle Cell Disease affects about 100,000 people in the US - more than 90% are non-Hispanic Black or African American, and an estimated 3-9% are Hispanic or Latino

Learn more about SCD in California ⬇️:
https://trackingcalifornia.org/sickle-cell-disease/sickle-cell-disease-in-california

The Center for Disease Control and Prevention's (CDC) scientists collect health information about people with (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. This information can be used to improve medical treatments to extend and improve the lives of people with . This (observed every year on June 19), CDC is supporting young families by raising awareness of sickle cell disease (SCD) and sharing information to help women with SCD stay healthy throughout .

What is SCD?
Sickle cell disease (SCD) is an inherited blood disorder present at birth. Healthy red blood cells are round and move through small blood vessels to carry oxygen to all parts of the body. A person with SCD has sickle-shaped red blood cells that are hard and sticky. These sickle cells stick together and block blood flow and oxygen in the body, causing mild to severe pain and other serious complications (health problems) such as infection, stroke, and acute chest syndrome. People with SCD can manage, prevent, and lessen the severity of SCD-related complications through regular care, lifestyle behaviors, and various treatments.

Can SCD Affect Pregnancy?
SCD can have a significant impact on a woman’s reproductive health. During pregnancy, women with SCD are at higher risk for developing complications, such as preeclampsia (high blood pressure during pregnancy) and blood clots, than women without SCD. For some women with SCD, pregnancy can make their disease more severe, and treatments may need to be changed to help manage their complications. This makes it especially important to receive regular preconception, prenatal, and postpartum care with SCD. Women with SCD who are pregnant or thinking about getting pregnant should try to receive care from a team of healthcare providers they trust and from those who have experience caring for women with SCD to help manage and prevent complications.

Take Steps for a Healthy Pregnancy
If you have SCD and are pregnant or thinking about getting pregnant, there are steps you can take to help you feel your best during this special time. One step you can take now is to read over the fact sheets described below on SCD and preconception, prenatal, and postpartum care.

These fact sheets contain information to help you learn what you can do to stay healthy with SCD throughout your pregnancy. Available in English and Spanish, these materials were developed in collaboration with the Sickle Cell Reproductive Health Education Directive, the American Society of Hematology, and the Foundation for Women & Girls with Blood Disorders.

Learn more about each fact sheet:
• Women with Sickle Cell Disease and Preconception Care: This fact sheet focuses on the steps you can take before getting pregnant to increase the chances of having a healthy pregnancy and a healthy baby. https://www.cdc.gov/sickle-cell/media/fact-sheets/pregnancy/women-with-scd-and-preconception-care.pdf

• Women with Sickle Cell Disease and Prenatal Care: This fact sheet focuses on the steps you can take during your pregnancy to stay healthy. https://www.cdc.gov/sickle-cell/media/fact-sheets/pregnancy/women-with-scd-and-prenatal-care.pdf

• Women with Sickle Cell Disease and Postpartum Care: This fact sheet focuses on the steps you can take to have a healthy recovery after delivery.
What You Can Do https://www.cdc.gov/sickle-cell/media/fact-sheets/pregnancy/women-with-scd-and-postpartum-care.pdf

• If you have SCD and are pregnant or thinking about getting pregnant, read these fact sheets on SCD and pregnancy and talk with your provider about how to best manage and treat your SCD.

• For more information on starting a family with SCD, read the fact sheet below on family planning and fertility options. https://sicklecellred.org/wp-content/uploads/2022/07/updated-family-planning.pdf

• Share the link to this page with friends, family, and colleagues to help raise awareness about SCD and pregnancy.

• Visit CDC’s web pages to learn more about SCD, and find additional resources to help people with SCD stay healthy.
https://www.cdc.gov/sickle-cell/index.html

www.cdc.gov

This don't miss Cayenne Wellness Center and Children's Foundation and Sickle Cell Community Consortium's "Hope Through Progress: Advancing Sickle Cell Care Globally" - a virtual 24 hour celebration filled with education, entertainment, and engagement with diverse members of the sickle cell community, hosted by

Register at https://tinyurl.com/WSCD2024

Cayenne Wellness Center and Children's Foundation is hosting blood drives throughout California this weekend, next week, and in July.

For more info, check out the images ⬇️:

📢 Don't miss this upcoming webinar for : What’s Data Got to Do With It? Perspectives on Federal Sickle Cell Disease Data Systems, June 18, 3–4 PM ET 📢
https://www.zoomgov.com/webinar/register/WN_jJ7Ko2dARhSHlgKlkQeApw?ACSTrackingID=USCDC_1054-DM130339&ACSTrackingLabel=NCBDDD%20Special%20Partner%20Alert%20-%206%2F13%2F2024&deliveryName=USCDC_1054-DM130339 #/registration

Federal agencies and external partners collect sickle cell disease (SCD)-related data for multiple purposes and needs. Gaining broad stakeholder input and buy-in on processes to promote timely and interoperable sharing of these data is critical to improve health outcomes for people living with SCD.

In this panel, learn about varied SCD data systems and a new effort to develop an SCD minimum core data set that can be applied across federal and non-federal enterprises.

Panelists include:
- CAPT Karon Abe, PhD, Chief of the Blood Disorders Surveillance and Epidemiology Branch; Division of Blood Disorders and Public Health Genomics; National Center on Birth Defects and Developmental Disabilities; Centers for Disease Control and Prevention (CDC)
- Aurelia Chaudhury, Model Co-Lead, Cell and Gene Therapy Access Model; Centers for Medicare & Medicaid Services (CMS) Innovation Center
- Meghna Alimchandani, MD, Deputy Division Director in the Office of Biostatistics and Pharmacovigilance; Center for Biologics Evaluation and Research; Food and Drug Administration (FDA)
- Jeffrey Brosco, MD, PhD, Director of the Division of Services for Children with Special Health Needs; Maternal and Child Health Bureau; Health Resources and Services Administration (HRSA)
- Julie Panepinto, MD, MSPH, Director of the Division of Blood Diseases and Resources; National Heart, Lung, and Blood Institute; National Institutes of Health (NIH)
- Liz Turi, MEng, CPHIMs, Branch Chief, OTECH/Standards/Care Coordination and Collaboration, Office of the National Coordinator for Health IT (ONC)

Panel moderator:
- LaVerne Perlie, MSN, BSN, Nurse Consultant, Office of Policy, ONC

Growing up with , Harry experienced numerous pain episodes, also known as crises, during his middle school and high school years.

"I had excruciating pain in my chest, back, and extremities." The pain episodes also affected his sleep and would later impact his ability to participate in extracurricular activities such as karate, basketball, football, and the marching band. "The physical exertion from these activities would trigger my asthma, which would result in a pain crisis and hospitalization".

Socially, it was difficult adjusting because other kids would tease him for being in the hospital and "sickly" which made Harry feel ashamed of his condition. "I realized I wasn't able to do the same things and activities kids my age were doing, I also had to take extra precautions and learn to preplan trips and activities to account for weather conditions and travel locations, and research ahead to see what hospitals were located in the area just in case I ended up with a pain crisis - that's a lot to consider as a teenager."

Read more of Harry's story ⬇️:
https://www.cdc.gov/sickle-cell/stories/harry-williams-jr.html

📢 Have you signed up to attend tomorrow's webinar?

Don't miss "The Alphabet Soup of CA Health Care - Making the Most of Genetically Handicapped Persons Program (GHPP) and California Children's Services (CCS)" happening tomorrow May 29th at noon:
https://attendee.gotowebinar.com/register/332049651785060445

📢 Don't miss next week's webinar, The Alphabet Soup of CA Health Care - Making the Most of GHPP and CCS, happening Wednesday, May 29th at noon! 📢

This session is ideal for Warriors, caregivers, Community Health Workers, Patient Navigators, Providers, or anyone involved in assisting individuals with Sickle Cell Disease in applying for and utilizing these benefits.

Executive director of the Hemophilia Council of California, Lynne Kinst will review two key CA health care programs - the Genetically Handicapped Persons Program (GHPP) and California Children's Services (CCS) - how to apply and best utilize the benefits these programs offer.

https://attendee.gotowebinar.com/register/332049651785060445

"While children with - the most common form of sickle cell disease - are vulnerable to serious infections and stroke, many don't receive the antibiotics or annual ultrasounds that national guidelines suggest could keep them healthier."

This learn more about the study California and Georgia's Sickle Cell Data Collection program conducted "National Quality Indicators in Pediatric Sickle Cell Anemia" ⬇️:

https://www.phi.org/press/study-finds-children-with-sickle-cell-anemia-may-not-receive-antibiotics-stroke-screenings/

Don't miss this legislative briefing happening next week May 14th with Networking California for Sickle Cell Care!

Join Networking California for Sickle Cell Care on May 14 from 11AM to 12PM for a hybrid legislative briefing on sickle cell disease and how California is improving models of care and saving more sickle cell lives. ❤️✨

In-person space is limited. Register here: http://bit.ly/4b68iyR

Children with chronic illnesses often face more challenges than their healthy peers in navigating adolescence.

Mimi shares about growing up with sickle cell disease, which often led her to miss out on many childhood activities.

"I was deprived of a lot of normal childhood activities" | Stories of Sickle Cell: Mimi Mimi is an attorney currently living in Sydney, Australia. She shares about growing up with sickle cell disease, which often led her to miss out on many chil...

"Having sickle cell disease is what led me to the healthcare field, even though my mother didn't want me to pursue nursing. She thought it was too strenuous and wanted me to have a sit-down job".

- Tasha Haines, registered nurse.

Tasha wants others to know that is manageable if you are aware of your lifestyle and how it contributes to your health. Read Tasha's story ⬇️:

https://www.cdc.gov/ncbddd/sicklecell/stories/tasha.html

Tasha’s Story Read real stories from people living with sickle cell disease (SCD)

Do you know a teacher that has a student living with ?

This check out and share the following resource ⬇️ :
https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheet_supporting_students_with_scd.pdf

📢 Happening next week - don't miss "SCD Past and Present: A Panel Discussion on Care Across the Lifespan" 📢

In observance of National Minority Health Month, the HHS Office of the Assistant Secretary for Health and the Office of Intergovernmental and External Affairs is hosting a virtual event on Monday, April 29, 2024, 4-5 PM ET, titled “SCD Past and Present: A Panel Discussion on Care Across the Lifespan”.

Since 1972, when sickle cell disease (SCD) first received federal funding, there have been numerous advancements in SCD clinical care led by pioneers who paved the way through early research and advocacy.

HHS will be hosting an esteemed panel of SCD trailblazers and individuals living with SCD to share varied perspectives—historical and contemporary—on SCD care across the lifespan.

Check out the livestream link ⬇️:

HHS.gov Watch the live stream here.

“A typical patient with sickle cell disease is in pain at home and has to make a decision. Do I come to the emergency department for that pain or not? I thought that those patients were making decisions as scientifically and as constructively and as decisively as a businessperson would. So, in other words, they’d made a list of pros and a list of cons, and they compared the pros and the cons, and they weighed their decision to come. And I learned that that’s not the case. Turns out that most pain is treated at home. It is not treated in emergency departments. It’s not treated in hospitals. Most of the time, patients in pain with sickle cell disease decide not to come to the emergency department."

-Dr. Wally Smith

Stories of Sickle Cell: Photoblog | CDC Photoblog of people living with sickle cell.

A new Morbidity and Mortality Weekly Report (MMWR) shows babies with are born in counties with high or very high levels of social vulnerability.

Understanding these factors is crucial for targeted interventions and improved health.

https://bit.ly/mm7312a1

Birth Prevalence of Sickle Cell Disease and County ... This report describes the prevalence of sickle cell ...

"Only about 1 in 5 children took the recommended twice-daily doses of antibiotics to prevent infections, and about half got annual ultrasounds to flag any risk for stroke."

Read more ⬇️:

Sickle cell children may not get antibiotics, stroke screening: Study Children with sickle cell anemia often don't get preventive antibiotics and ultrasounds, despite a risk of infection and stroke, per a study.

Epidemiologists and community organizations are both important for

Learn how both working together can transform care for those living with https://preprint.press.jhu.edu/pchp/sites/default/files/2024-01/PCHP-WIP_Young.pdf

preprint.press.jhu.edu

Did you know?

1 in every 350 Black babies is born with sickle cell disease (SCD) across 11 states in the U.S. Children with SCD have complex health needs that benefit from ongoing specialized healthcare. A new CDC study shows that many babies with SCD are born into counties with high or very high levels of social vulnerability.

Community groups can help these babies and their caregivers to get the care they need. For example, a community could organize rides to medical appointments. https://www.cdc.gov/mmwr/volumes/73/wr/mm7312a1.htm?s_cid=mm7312a1_w

Stay informed about the latest SCD research and resources available: https://bit.ly/48AC3Wa

Save the date for our next webinar! 📅

Topic: What's new for the Sickle Cell Data Collection (SCDC) Program
When: Thursday, March 8th from 12pm-1:30pm PST

The California SCDC team will be sharing program updates and activities for the coming year, as well as giving an update on data collected for the California population.

We'll also be joined by our partners in Texas! The Texas SCDC team will also be sharing updates on their program's implementation and activities for the coming year.

Register to attend ⬇️

attendee.gotowebinar.com

Healthy lungs are important when you’re living with , which puts you at greater risk for complications. Lung issues can lead to breathing and sleep-related disorders.

This checklist helps identify signs and symptoms to discuss with healthcare providers:

www.cdc.gov

"From the time they are born or that they are diagnosed with , children should be receiving antibiotic prophylaxis every day, twice a day - that helps protect from really serious bacterial infections that can be life threatening...

Children up to age 16 should also be getting an annual screen for stroke risk, usually starting around age 2 because children with sickle cell anemia are at an increased risk for stroke..."

In California, the SCDC program looked at claims data and found that only 22% of children were receiving the recommended amount of antibiotic prophylaxis each year. In children age 2 to 15 years, only about half (50%) were receiving their annual recommended screening for stroke risk.

Learn more ⬇️

National Quality Indicators in Pediatric Sickle Cell Anemia 10.1542/6345004029112Video AbstractPEDS-VA_2022-0608046345004029112OBJECTIVE:. To assess nationally endorsed claims-based quality measures in pediatric sickle cell anemia (SCA).METHODS:. Using data from the Sickle Cell Data Collection programs in California and Georgia from 2010 to 2019, we evaluate...

Help prioritize Sickle Cell Disease Funding in the state of California.

Take action using link below

Save Sickle Cell Lives! I just took action to save sickle cell lives. Join me in ensuring adults with Sickle Cell Disease are ! []