Disproportionate Impact on People with Sickle Cell Disorders: Written evidence submitted to Women’s Committee Inquiry on Unequal impact: Coronavirus (Covid-19) and the impact on people with protected characteristics

• There are 14,000 people with SCD in the United Kingdom (UK) and they predominantly belong to the Black, Asian and Minority Ethnic population, often living in families and communities disproportionately impacted by COVID-19 in areas of employment, housing, nutrition, leisure, education, health and social care, transport and energy as well as discrimination and institutional racism. • People with SCD are among those who have been asked to shield because they have underlying health conditions but we have been concerned about public health messaging, shielding letters and the correct identification of who is high risk. • COVID-19 is extremely dangerous to someone with SCD because hypoxia is a major cause of a sickling crisis which on top of COVID-19 symptoms can lead to co-morbidities of acute chest syndrome, stroke, organ failure and death. • Many people with SCD rely on regular blood transfusions. Blood types for much of the BAME community was already in short supply and has now become even harder to access due to less people able to leave their homes to donate blood. • The charities and social networks people with SCD rely on for information, education and aid have been affected and are in very precarious financial straits. This is partly because this condition has been largely marginalised due to it not being a major concern for the majority white British population. As these organisations are hugely reliant on support from BAME communities, they have been doubly hit by the impact of the pandemic as this population has been disproportionately affected economically and socially.
• The impact of the Corona Virus Act of 2020 also applies to people with SCD who may not self-identify as disabled but as having a chronic, genetic or inherited condition. In addition to negative experiences with PIP payments, universal credit and jobseekers allowance, many have been told they do not qualify as being officially disabled, partly because of the large number of errors in general and partly because SCD, and the multiple health complications it can lead to, is not a well understood condition. • Women with SCD and who have children with SCD need more practical and mental health support than the general population. • We are particularly concerned about those people with SCD who are self-isolating/shielding alone at home, asylum seekers, refugees and those who are destitute.