United to Conquer Sickle Cell Disease

SCDC Update, May 2020

**Sickle Cell Disease and COVID-19 Programs and Resources**

ASH Releases Checklist for SCD Patients Presenting to the Emergency Department During Pandemic

The American Society of Hematology (ASH) recently released a checklist intended to assist in the evaluation of individuals with sickle cell disease (SCD) in the emergency department presenting with symptoms concerning for COVID-19 and/or complications of SCD, with SCD-specific considerations for evaluation and treatment. The resource was developed by a group of hematologists and emergency department physicians with expertise in SCD.  ASH has developed and is maintaining a webpage containing a series of resources to assist hematologists in navigating the COVID-19 public health crisis and to provide a medium to exchange information. The checklist is available on the website, as well as Frequently Asked Clinical Questions on COVID-19 and SCD, and links to other SCD specific resources.

Update on Surveillance Registry for COVID-19 in SCD

As of May 15, 2020, 172 cases have been reported to the Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion (SECURE SCD Registry).  The SECURE SCD Registry was developed by a team of SCD providers from the Medical College of Wisconsin to capture pediatric and adult COVID-19 cases that are occurring across the world in individuals living with sickle cell disease (SCD).  The site provides regularly updated summary information.  Providers who care for individuals with SCD are encouraged to continue to report all of their cases of COVID-19 to this registry. The reporting of each case takes approximately 5-10 minutes. If you have any questions, please contact covid.sicklecell@mcw.edu.

SCDAA’s Advisory and Resources on SCD and COVID-19 for Community and Providers

The Sickle Cell Disease Association of America (SCDAA) and its Medical and Research Advisory Committee continue to provide timely updates to their resources and advisories for the community and providers on COVID-19 and sickle cell disease (SCD): 

Webinar on Sickle Cell Lung Disease in the COVID-19 Era – Recording Available 

In early May, the American Thoracic Society (ATS) and Sickle Cell Disease Association of America (SCDAA) hosted a webinar that detailed the recent experience of Dr. Elizabeth Klings, a pulmonologist from Boston Medical Center, treating COVID-19 in individuals with sickle cell disease and lung disease.  Dr. Klings also reviewed currently available guidelines for the care of sickle cell patients with COVID-19. The program ended with a moderated discussion with Dr. Klings and hematologists. The recording of the webinar is available here.

Sickle Cell Community Consortium Offers Resources to Address Challenges of Pandemic 

The Sickle Cell Community Consortium (SCCC) is committed to helping their partners navigate the challenges of COVID-19 and has developed a number of programs and resources to help during this unprecedented time. The SCCC convened a series of community assessment meetings to define the needs of the sickle cell community during this time and new resources were developed around the three major categories of need identified: social services, mental health support, and education support.  Learn more here.

Be The Match Offers Counseling for Sickle Cell Warriors During Pandemic 

The increased stress of COVID-19 and managing sickle cell disease can be difficult. Be The Match® is now offering free counseling services to sickle cell warriors and their loved ones. Learn how to connect one-on-one with their licensed social worker at http://bethematch.org/scdcounseling.

Webinar on SCD Among Populations Living in Extreme Environments – Recording Available

On May 13, the Noncommunicable Diseases (NCD) Synergies project at Partners In Health and the Program on Global NCDs and Social Change at Harvard Medical School hosted a Knowledge Exchange webinar highlighting the intersections of COVID-19 and sickle cell disease (SCD) titled “A Focus on SCD Among Populations Living in Extreme Environments.” The Knowledge Exchange was led by Dr. Julie Makani, from Muhimbili University of Health and Allied Sciences, and featured leaders from across the global sickle cell network. The program highlights examples of experiences from Ghana, Nigeria and the United Kingdom.  A recording of the program is available here.

America’s Blood Supply Impacted by COVID-19 – Donate Today 

There is an ongoing need for blood. Blood donation is safe and needed.

The blood community continues to face challenges to maintaining the blood supply and collection in the United States as result of the COVID-19 pandemic. The SCD Coalition is especially concerned about an adequate blood supply for individuals with sickle cell disease (SCD) for whom transfusions are lifesaving and prevent complications, including devastating complications such as stroke. The need for blood remains during the pandemic and countless individuals with SCD and others across the nation will continue to rely on blood donors to help provide a life-saving component of their health care. If you are healthy, consider donating today. Click here for frequently asked questions about donating blood during the COVID-19 pandemic. To find a local blood collection site and to schedule an appointment, please contact one of the following organizations: 

**Other SCD News**

ASH RC Announces Updated Website and New Brochure on Clinical Trials in SCD 

The ASH Research Collaborative (ASH RC) recently launched a revamped website with a fresh new look and designed with site visitors in mind.  The two core elements of the ASH RC include its Data Hub and Sickle Cell Disease Clinical Trials Network. The goal of the new website is to provide visitors with an easier way to browse information about the ASH RC, their services, and resources.  One of the newest ASH RC resources highlighted on the site is a brochure entitled Why Participate in Clinical Trials for Sickle Cell Disease?  Stay connected with the ASH RC by signing-up for their newsletter on the ASH RC Website.

Join the ASH Research Collaborative in Celebrating Clinical Trials Awareness Week 2020!

In recognition of Clinical Trials Awareness Week, May 18-22, the ASH Research Collaborative (ASH RC) will be sharing key information about the clinical trials process, and importance of participation. They will be sharing perspectives from clinical trials participants, facts about clinical trials, and participant rights throughout the week on ASH RC social media platforms: Instagram,  Twitter, and Facebook. The SCD community is encouraged to engage with the ASH RC on social media by retweeting/reposting, commenting, and participating in the informative polls will help increase the reach of this critical information. Raising public awareness about the clinical trials process and participation is especially important, as many are unaware that every treatment and drug available in the United States must go through an approvals process. Please join the ASH RC in raising awareness during Clinical Trials Awareness Week, and on Clinical Trials Awareness Day, today, May 20, 2020.

Patient Advocate Foundation Offers Sickle Cell CareLine to Address Roadblocks with Access to Care 

The Patient Advocate Foundation offers a Sickle Cell CareLine designed to provide individualized case management assistance to individuals with SCD. The Sickle Cell Careline will help with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact their access to care. This resource has been especially helpful during the ongoing challenges associated with the pandemic.  For assistance or more information, please call 1-855-588-6362 or visit https://sicklecell.pafcareline.org/

CDC’s Sickle Cell Data Collection Program Announcements
The Sickle Cell Data Collection program determines the number of people living with sickle cell disease (SCD) and monitors changes related to their health over time. 

  • Data Brief: “Healthcare Utilization for Vaso-occlusive Episodes by People with Sickle Cell Disease in California and Georgia, 2015” shows that pain crises, which can be excruciating, are the most common reason patients with SCD go to the emergency department or hospital.
  • Webinar: “Program Findings and Activities & Future Directions” 
    • Date/Time: Tuesday, May 26, 2020, 10:00am-11:30am PST.
    • Description: Ten years since beginning public health surveillance for SCD, the California and Georgia SCDC programs will share the programs’ histories and future directions, current information about the population of those with SCD in these states, and key findings from recent analyses. Register here.
  • Newsletter: Subscribe to The Bloodline to stay in the know about program activities, data, presentations, and more. Past issues are available here.

ASH Advocates for Improved Care for Individuals with SCD

The American Society of Hematology (ASH) has been working with Members of Congress to advocate for inclusion of a provision in the stimulus bill directing the Centers for Medicare and Medicaid Services (CMS) to develop a demonstration program under Medicaid (including for beneficiaries who are Medicare/Medicaid dual eligible) focused on improving outpatient preventive and primary care for individuals with SCD. Recent data show that individuals with SCD are at higher risk for severe illness from COVID-19 due to a suppressed immune system and comorbid conditions of the heart, lungs, and other major organs. Representative Danny Davis (D-IL) was joined by 35 of his colleagues in sending a letterto congressional leadership requesting the inclusion of the demonstration program and ASH led a letterfrom nearly 70 partner organizations to congressional leadership in support of the effort. ASH thanks the many SCD partner groups who signed the letter and SCD advocates who wrote their congressional representatives encouraging support for this important effort.

**Upcoming SCD Events**

Australian Sickle Cell Advocacy Presents Webinar on The Psychosocial Effects of Sickle Cell Disease 

Due to the COVID-19 pandemic, the world has adjusted to the new reality of social distancing. This year, Australian Sickle Cell Advocacy, Inc., presents the first-ever online panel discussion on World Sickle Cell Awareness Day under the theme: “The Psychosocial Effects of Sickle Cell Disease.” The program is scheduled for June 19 from 7:00 p.m. 9:00 p.m. (Australian Eastern Standard Time) will address the effects of living with SCD on education, relationship friends/siblings, social interactions, family adjustment, isolation, and stigmatization. The global panel includes an adult hematologist, pediatric hematologist, and a mental health expert. The panel also include caregivers, SCD advocates.  The panelists will share their experiences and expert advice as health care providers, and advocates. Register for the program here; and e-mail questions to info@aussicklecelladvocacy.org.

Shine the Light on Sickle Cell - June 19, 2020 

On June 19, 2020, Sickle Cell Disease Association of America (SCDAA) and SiNERGe will “Shine the Light on Sickle Cell” to bring attention to sickle cell disease (SCD) on World Sickle Cell Day. You are invited help to organize and/or participate in a Shine the Light on Sickle Cell event as people from around the globe host/participate in programs to increase awareness of SCD disease and speak out for a cure.  Learn more about how you can help spread the word about the campaign and share information about your event.

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