California Sickle Cell Resources

Webinar on Sickle Cell Disease (SCD) and COVID-19 Management in the Emergency Department Friday, November 20, 2020... 11:00 a.m. to 12:00 noon Eastern time Co-Hosted by the American Society of Hematology (ASH), American College of Emergency Physicians (ACEP), and Emergency Department Sickle Cell Care Coalition (EDSC3) The webinar will provide education on how to evaluate individuals living with sickle cell disease (SCD) in the emergency department (ED) presenting with SCD-specific considerations for evaluation and treatment. The webinar will be chaired by Jeffrey Glassberg, MD, from Mt. Sinai, and the following topics will be addressed: COVID-19 Care & Medical Considerations in the ED for Individuals with SCD Caroline Freiermuth, MD, University of Cincinnati ED Patient Flow & Operational Considerations Henry W. Young, II, MD, University of Florida Pain Management for Individuals with SCD in the ED During the Pandemic Gentry Wilkerson, MD, University of Maryland Social & Emotional Wellness for Individuals with SCD During the Pandemic Drs. Freiermuth and Wilkerson Additionally, the webinar will highlight ED resources available for the care of individuals living with SCD, who seek treatment during the COVID-19 pandemic. Register now using link below! https://hematology.zoom.us//regi/WN_IJ8-0K8USxa4MXd3IKwrwA

Check out several upcoming webinars hosted by the Pacific Sickle Cell Regional Collaborative and the HHS Office of the Assistant Secretary for Health, Regions 6, 8, 9 & 10 for 2020 Sickle Cell Awareness Month webinar series September 24, 30, October 1 and 8 at 11 AM-Noon Pacific. WEBINAR #1: Innovations in Building Sustainable Statewide Health Systems Improvements for Sickle Cell Disease: Networking California for Sickle Cell Care (NCSCC) - September 24, 2020 Meeting number ...(access code): 199 494 5005 Meeting password: e4NCsEGZS99 Join meeting Tap to join from a mobile device (attendees only) +1-415-527-5035,,1994945005## US Toll Join by phone +1-415-527-5035 US Toll Global call-in numbers Join from a video system or application Dial [email protected] Join using Microsoft Lync or Microsoft Skype for Business Dial [email protected] WEBINAR #2: Innovations in Sickle Cell Disease Care: Collaboration with Community Health Workers on the SCD Clinical Team - September 30, 2020 Meeting number (access code): 199 349 6027 Meeting password: FjPgmw7GH56 Join meeting Tap to join from a mobile device (attendees only) +1-415-527-5035,,1993496027## US Toll Join by phone +1-415-527-5035 US Toll Global call-in numbers Join from a video system or application Dial [email protected] Join using Microsoft Lync or Microsoft Skype for Business Dial [email protected] WEBINAR #3: Understanding and Addressing Sickle Cell Disease Healthcare Disparities - October 1, 2020 Meeting number (access code): 199 732 3788 Meeting password: E9PwvqJVP34 Join meeting Tap to join from a mobile device (attendees only) +1-415-527-5035,,1997323788## US Toll Join by phone +1-415-527-5035 US Toll Global call-in numbers Join from a video system or application Dial [email protected] Join using Microsoft Lync or Microsoft Skype for Business Dial [email protected] WEBINAR #4: Innovations in Sickle Cell Disease Clinical Workforce: Building Next Gen Advance Practice Providers the Mini-credential for Physician Assistants - October 8, 2020 Meeting number (access code): 199 576 1831 Meeting password: c79mC6vmkbr Join meeting Tap to join from a mobile device (attendees only) +1-415-527-5035,,1995761831## US Toll Join by phone +1-415-527-5035 US Toll Global call-in numbers Join from a video system or application Dial [email protected] Join using Microsoft Lync or Microsoft Skype for Business Dial [email protected] Please fee free to share with others!

Today, First Lady Melania Trump will host a White House roundtable discussion: Improving the Lives of Americans with Sickle Cell Disease. ADM Giroir and RADM Collins will attend the event, which is scheduled to begin at 1 pm EDT and will be broadcast via https://www.whitehouse.gov/live/

Save the Date! Upcoming SCDC Webinar.. Monday, September 28, 2020 10:00 - 11:30 AM PDT... CIRM, California's Stem Cell Agency, was created by the voters of California in 2004 when they overwhelmingly passed Proposition 71, which authorized $3 billion in funding for stem cell research in California. The agency funds stem cell research at institutions and companies throughout California (as well as institutions and companies outside of the state that conduct a portion of their research in California) with the goal of accelerating treatments to patients with unmet medical needs. Guest speaker CEO and President of CIRM Maria Millian, will present on what's new at CIRM,and programmatic updates particularly as they relate to sickle cell disease. Register now: https://attendee.gotowebinar.com/regist/1596563860243435021

Upcoming NASEM Webinar! Registration information below: On September 10, 2020, from 2:00 PM to 3:00 PM ET, join the National Academies of Sciences, Engineering, and Medicine for a webinar releasing a new report on sickle cell disease (SCD) in the U.S. and discussing a strategic plan and blueprint for improving care and outcomes for individuals with SCD. The new report examines the current state of SCD in the U.S., including the health outcomes, complications, current guidelin...es for care, and the economic burden associated with the disease. The report also discusses current programs to screen for SCT and SCD, treatment and care programs for SCD, identifies existing gaps in research and programs and lays out guidance in the form of strategic objectives (strategic plan) and action steps (blueprint) for addressing SCD in the U.S. Members of the expert committee that developed the report will outline their findings, conclusions, and key messages: Marie C. McCormick (Committee Chair), Harvard University Kim Smith-Whitley, Children's Hospital of Philadelphia Register Here https://www.eventbrite.com/e/addressing-sickle-cell-disease

12th Annual Cayenne Wellness Seminar! ( Registration link below) Cayenne Wellness Center’s Annual Sickle Cell Disease Educational Seminar is a three-day seminar designed to address the multi-factorial aspects of sickle cell disease and sickle cell trait awareness and education. The 12th Annual Virtual Sickle Cell Disease Educational Seminar is designed for nurses, health care professionals, providers, educators, social workers, students, individuals with sickle cell disease a...nd their families and the community at large. The purpose of this educational activity is to strengthen the participant’s knowledge base about sickle cell disease and sickle cell trait through lecture, discussion and sharing of current and future treatment regimens. In addition to presentations on the pathophysiology, complications, management, and treatment of sickle cell disease, the seminar will present the latest scientific and clinical information related to the disease. https://cayennewellness.org/2020-scd-seminar/

Sickle cell disease exposes major concerns in Black community One donation can save up to three people, according to the Martin Center in Indianapolis. The article below emphasizes the importance of minority blood donation to the SCD community. Read more below!... https://www.theindychannel.com//sickle-cell-disease-expose

Cross-sectional study of research funding and outputs for cystic fibrosis and sickle cell disease(SCD) found that both federal funding and foundation expenditures were greater for cystic fibrosis(CF) compared with sickle cell disease. Although SCD is 3x more prevalent than CF there were more research articles and drug approvals found for CF. Researchers suggest some disparity in funding and may be due to the historical mistrust of the medical establishment leading to less phi...lanthropic support. The article also mentions that SCD would greatly benefit from adopting a model similar to CF which includes linking a robust national organization to state and local chapter in order to increase funding and donations, novel therapeutics, research and develop interconnected comprehensive care centers. To learn more check out the article below! https://pubmed.ncbi.nlm.nih.gov/32219405/

A national cross sectional study finds that black patients including children were significantly less likely to receive opiod analgesia than white patients. A history of medical mistreatment leading to racist myths about black people and pain and implicit bias were highlighted as casual factors for this disparity. To learn more check out the article below:... https://www.washingtonpost.com//265e77d6-b626-11ea-aca5-eb See more

There is, understandably, a lot of concern in the SCD community about COVID-19 and the risk it places on those with SCD. Preliminary data coming out of the SCD COVID registry out of the Medical College of Wisconsin include 225 cases of COVID among those with SCD, and although these are likely to represent those being seen by a hematologist and those with more severe disease (and therefore may not apply to all with SCD), the data are helpful in informing care providers about what to watch for in patients with both conditions.

Such sad news. Marqus was a warrior who did all he could to support others, and he helped many. Sending our thoughts to his family, friends, and the Sick Cells community.

We learned today that Dr. Bert Lubin passed away over the weekend, and the hearts of all who knew and worked with him are heavy. Dr. Lubin was a champion for better care for those with SCD, and building on the early work by the Black Panthers to test for sickle cell disease and trait, he pushed to begin a newborn screening program for SCD in California. He was also a generous, kind, and supportive colleague and mentor. Dr. Mark Laret, President and CEO of UCSF Health, shared ...Continue reading

Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease Checkout the link to this qualitative study below! https://jamanetwork.com//jamanetworko/fullarticle/2766547

It's World Sickle Cell Day and we have amazing news and an ask! Did you know that our program's work understanding sickle cell disease as a public health problem has never been funded by Congress (which appropriates funds each year for almost every other disease to be studied by the CDC)? Californians (others, see below) - We were surprised to learn that the CDC SCD Surveillance Program is being considered for Congressional funding in this budget cycle. If you could contact ...the folks in Sen Feinstein's office (any California voter) and/or Rep. Lee (12th, Alameda Cty) or Roybal-Allard (40th, LA Cty) to express your support that would be wonderful! They start discussion on Monday, so NOW is a good time. Email or phone: "Hi, I'm a California voter and I am advocating for people with sickle cell disease to receive equitable research and healthcare dollars. I support full funding of the Sickle Cell Disease Data Collection Program at the CDC ($5 Million requested)." Sen. Dianne Feinstein: Andrew Fuentes, Legislative Asst., Health: [email protected] 202 224-3841 Rep. Lucille Roybal-Allard (40th, Los Angeles): Debbie Jessup, Health Advisor Public Policy: [email protected] 202 225-1766 Rep. Barbara Lee (12th, Alameda County): Diala Jadallah, Sr. Policy Analyst: [email protected] 202 225-2661 Folks in AL, CT, FL, GA, HI, IL, KS, LA, MA, MD, MI, MS, NH, NJ, OK, OR, RI, SC, TN, WA, WI, let us know below if you're up for contacting the folks on committees from your state and we'll get you the contact information.