Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
Currently Skimming:
2 Societal and Structural Contributors to Disease Impact
2 Societal and Structural Contributors to Disease Impact
Pages 47-80
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From page 47... ...
Chapter Summary • addition to disease-related factors, there are numerous sociocultural, In environmental, individual, and economic factors that influence outcomes across the life span for those living with sickle cell disease (SCD)
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From page 48... ...
Because of systemic racism, unconscious bias, and the stigma associated with the diagnosis, the disease brings with it a much broader burden. Socioeconomically, African American children living with SCD are more likely to be in a household below the federal poverty level (Boulet et al., 2010)
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Stigma can also affect an individual's use of health care and provider–patient interaction. SCD patients report fearing being viewed by providers as drug seekers and as seeking "unnecessary" pain treatment (Anderson and Asnani, 2013; Glassberg et al., 2013)
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In Saudi Arabia, SCD patients reported having experienced stigma from health care providers, with some stating that they were called addicts for seeking treatment for their acute vaso-occlusive pain (Asiri et al., 2017)
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, but there is a need for studies that evaluate implicit bias against the SCD population. Racism Those affected by SCD often also face racism, which is related to but distinct from stigma and implicit bias.
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At the individual level, some providers express racial biases that result in offering a significantly lower quality of care to African Americans and, by default, individuals living with SCD. There are both similarities and differences among countries with the unique burden imposed by racism.
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. As a result of these racist beliefs about pain, African Americans are more likely to receive a lower quality of pain management than white patients and may be perceived as having drug-seeking behavior.
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INDIVIDUAL FACTORS The effects of SCD vary based on its severity and a number of individual factors that affect how -- and how effectively -- an individual deals with SCD. These factors include health literacy, demographic variables, cognitive deficits, mental health challenges (e.g., depression)
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. The educational tools that are developed to improve health literacy should include information on not only SCD, managing medications, and making decisions about treatments but also curative therapies, such as hemato oietic stem cell transplantation (HSCT)
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(Open Session Panelist) Research studies show that adults and children living with SCD experience mental health impacts from the condition, as discussed in Chapter 4.
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. In a 2006 interview study of maternal caregivers of children living with SCD, mothers caring for children with SCD had higher depressive mood scores than mothers caring for healthy children (Moskowitz et al., 2007)
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, an easily accessible technology, such as mHealth, may be beneficial for promoting positive coping strategies. Cognitive and behavioral coping strategies have also been used by individuals living with SCD in Jamaica to reestablish control over their response to SCD, others' responses to SCD, and the physical manifestations of SCD (Anderson and Asnani, 2013)
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, QOL, adaptive behaviors, and coping strategies. Low QOL scores were significantly associated with less adaptive behaviors, while appraisals of hope were
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. Efforts to improve QOL and outcomes for individuals living with SCD must include attention to environmental contributors, which in general are more amenable to change than molecular and other biological contributors.
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This results in a constellation of disparate problems that contribute to the burden of the illness, which implies that an equally wide range of policy instruments must be deployed in response. Health insurance, disability insurance, employment accommodation, school-based interventions, and medical innovation all must play a role in addressing the SCD burden.
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Young adults with SCD are a particularly vulnerable group; they face a high risk of being uninsured when transitioning from child to adult insurance arrangements. Constructing and implementing registries with long-term follow-up could provide more robust evidence of how SCD patients transition across health insurance status over the life course and true lifetime costs of care.
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. The available evidence specific to SCD patients demonstrates that health insurance status clearly affects access to care.
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If so, this would suggest that health insurance can expand access to appropriate care. On the other hand, uninsured patients may be using ED visits for less acute episodes, which would normally be handled by a routine source of care.
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The committee was unable to find national estimates of health insurance coverage for SCD patients in the literature. However, surveillance data from California shared by the CDC Foundation with the committee provide some relevant insight.
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Taken as a whole, the evidence suggests that health insurance affects access to particular therapies, correlates with access to health care facilities, and correlates with mortality and outcomes in the same direction. It is not possible to rule out that poor health outcomes among, say, Medicaid and uninsured patients result from the patients' greater disadvantage status rather than from their insurance status.
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. Fourteen of the individuals living with SCD received disability benefits, and 14 out of the 16 individuals with SCD who were not employed expressed a desire to have a job.
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. Improving health insurance access and generosity might address out-ofpocket spending burdens, but there are few financial instruments available for insuring patients against this considerable time cost of caregiving.
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A number of studies have examined relationships between attendance and school performance among children living with SCD. Schwartz et al.
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. Individuals living with SCD and their families also suffer employment costs as a result of the disease.
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Health insurance does not cover the adverse employment and economic consequences of SCD. Instead, that lies within the traditional scope of disability insurance programs, such as SSDI and SSI.
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More generally, recent research in the economics literature on disability insurance programs -- not specific to SCD -- recommends expanding access to these programs and reducing the number of eligibility reassessments needed (Low and Pistaferri, 2018)
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Conclusion 2-5: SCD imposes psychological, social, and financial burdens on the individual, caregivers, and family. Recommendation 2-1: The Social Security Administration should re view disability insurance qualifications to ensure that the qualification criteria reflect the burden of the disease borne by individuals with sickle cell disease.
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2017. Health disparity in hematopoietic cell transplantation for sickle cell disease: Analyzing the association of insurance and socioeconomic status among children undergoing hematopoietic cell transplantation.
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2010. Reproductive decisions in people with sickle cell disease or sickle cell trait.
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2014. Academic achievement for adults with sickle cell disease compared with healthy siblings.
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2018. Boston public schools agree to recognize sickle cell disease as disability.
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2017. Health literacy in adolescents with sickle cell disease.
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2019. Cognitive function in sickle cell disease across domains, cerebral infarct status, and the lifespan: A meta analysis.
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2017. Association of social-environmental factors with cognitive function in children with sickle cell disease.
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