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Helping Those in Need: Supporting the Sickle Cell Community During the COVID-19 Pandemic The oneSCDvoice team was very impressed by GBT’s tremendous donation of $100,000 to help mitigate health insecurities and access to care at this critical time for patients with sickle cell disease. As reported by the Washington Post earlier in the month, African Americans appear to be disproportionally affected by COVID-19. Given the correlation between existing medical conditions (heart disease, lung disease, kidney disease, diabetes, etc.) and COVID-19, patients with sickle cell disease have a higher likelihood of infection. So the situation is dire for those individuals who desperately need medical treatment. The Sickle Cell Disease Association of America (SCDAA) launched a COVID-19 Emergency Fund with the goal of raising $100,000. In just 24 days, they surpassed the goal and have raised $173,547! The funds will be distributed to sickle-cell non-profit organizations to help their community members with health care, food insecurity, and other related concerns. From the website: “Nonprofits that meet the basic needs of sickle cell patients are eligible for operating support including those that provide child care, food, housing, health care and mental health services, as well as those that support our local health care system and frontline health care workers.” If you would like to make a direct impact in your local community, SCDAA provides a list of local chapters. The local organization in Connecticut is called "Michelle’s House." It focuses on enhancing the quality of life and well-being of individuals with sickle cell disease. Across the country, the Sickle Cell Anemia Foundation of Oregon has also launched a COVID-19 Emergency Fund for patient relief. SCDAA is not alone in raising funds to help the sickle cell patient community. There are plenty of examples of individuals and organizations that are raising funds and making donations—including Lucas Akol’s fundraiser to support children with sickle cell anemia with COVID-19 in Uganda. Keeping with the global theme, the UK-based Sickle Cell Society has included relevant resources as well as ideas for fundraising to support those affected by sickle cell disease. We hope this outpouring of support continues, and when we all can come together again physically, we hope this spirit of giving translates to volunteering.   Best wishes and stay well. oneSCDvoice team

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Much has been published in leading medical journals about the phenomenon of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. The resulting condition, coronavirus disease 2019 (COVID-19), has had a societal effect comparable only to the Spanish flu epidemic of 1918. As the flow of clinical science has better informed the contemporary narratives, more is being learned about which individuals and groups experience the most dire complications. Researchers have emphasized older age, male sex, hypertension, diabetes, obesity, concomitant cardiovascular diseases (including coronary artery disease and heart failure), and myocardial injury as important risk factors associated with worse outcomes; specifically, case-fatality rates vary over 100%. These data sourced from China and Europe have not been replicated in the US, but the US experience may nevertheless represent similarly distressing outcomes in these highest-risk phenotypes. The concerns about these observations are appropriate and the published data are indeed actionable; those who fit the highest-risk phenotypes can be advised to assiduously adhere to safe practices including hand hygiene, use of masks in public spaces, and social distancing/physical isolation. These measures not only are flattening the curve but are no doubt saving lives. Abstract source

Objective: Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD). Methods: Forty-two caregivers of infants and toddlers (aged 1–34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments. Results: Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD −1.88, p = .03), competence (MD −3.11, p = .002), depression (MD −3.94, p < .001), and the overall parent domain (MD −12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME. Abstract source

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Career Specific Relief Funds USBG National Charity Foundation Bartender Emergency Assistance Program: Financial grant designed to help those in the Bartending industry who have experienced a catastrophic event or emergency hardship. Food & Nutrition U.S. Department of Agriculture: All USDA/FNS nutrition assistance programs, including SNAP, WIC, and child nutrition programs, have flexibilities that allow them to respond to on-the-ground realities and support response and recovery efforts. Healthcare & Guidance State Health Departments: The CDC compiled a list of the websites for each state or territorial health departments. Each link is clickable by state. Housing Direct Stimulus Payments to individuals and Families: The IRS will issue rebate checks based on the 2019 tax return (or 2018) if filed. These one-time payments are: $1,200/individual, $2,400/married, and $500/child under age 17. Eligibility provisions apply. To see full guidelines, please visit the “Legislation” category in our COVID Care Resource Center.   Abstract source

Patients living with Sickle Cell Disease are considered one of the vulnerable populations, at high risk for COVID-19. In addition, those who go for lab tests, blood transfusion, infusion, port flushing or other needed procedures, may need advice on how to proceed. Check in more with Cayenne Wellness Center. Cayenne Wellness Center and Children’s Foundation was first established in the year 2000 and, in the beginning, held a broad vision of general public health and wellness. The mission of Cayenne Wellness Center is to increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care.   Abstract source

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