Sickle Cell Disease in Social Security Disability Evaluations (2025)
Chapter: 8 Sickle Cell Disease and Disability Evaluations
8
Sickle Cell Disease and Disability Evaluations
Chapters 2 through 4 provide an overview of pain in sickle cell disease (SCD) and different treatment settings, including emergency department and in-patient hospital settings. Those chapters also support the conclusion that the Social Security Administration’s (SSA’s) SCD-specific listing criteria focused on the number of documented pain crises requiring intravenous or intramuscular opioid medication or the number of hospitalizations of specified duration and interval within a 12-month period are too restrictive. That is, people living with SCD who meet these current criteria reasonably qualify for SSA disability benefits, but many others do not meet these criteria, despite experiencing an equivalent level of disease severity and functional limitation.
Chapters 5 and 6 provide an overview of SCD-related conditions across a variety of body systems. Some individuals living with SCD who experience these conditions may qualify for SSA disability benefits if the severity of the conditions meets or medically equals relevant listing criteria. However, other people with SCD may have a related health condition that fails to meet all the listing-level criteria, but the additive effect of the condition plus SCD or the cumulative effect of multiple conditions may equivalently affect their overall functioning. Chapter 7 emphasizes the importance of considering the cumulative medical and social burden of living with SCD, taking into account the disease’s effect on all body systems over time.
This chapter looks at SCD and disability in general as well as considerations pertaining to SSA disability evaluations.
SICKLE CELL DISEASE AND DISABILITY
SCD is a lifelong condition that affects multiple systems of the body and may lead to end-organ damage and early mortality. A large body of research shows that individuals living with SCD experience disability when defined as “restrictions in the types of activities and social participation that an individual can perform as a result of physical or mental impairments or conditions of longstanding duration within an environment that does not provide sufficient accommodation to facilitate participation” (Swanson et al., 2011, p. S390). These impairments emerge from the complex clinical and social implications of living with SCD (Swanson et al., 2011).
Clinically, individuals report functional impairments arising from complications in vision, hearing, cognition, language, and mobility that emerge from pain, fatigue, repeated vaso-occlusive events, and strokes (Swanson et al., 2011). These clinical complications compound and cause social complications such as psychosocial and mental health difficulties, including depression and anxiety, social isolation, and limited participation in school and work (Swanson et al., 2011). As described in the previous chapter, children and adults living with SCD report high levels of missed school days and reduced engagement in the labor force because of pain and other symptoms and effects of living with SCD (Eaton et al., 1995; Gil et al., 2004; Gordon et al., 2024; Heitzer et al., 2021; Holdford et al., 2021; Idowu et al., 2018; Rizio et al., 2020; Sanger et al., 2016; Schwartz et al., 2009).
These limitations on the activities of daily life and on maintaining social functioning stem directly from the SCD lived experience. Further research has shown that individuals have limitations in completing tasks in a timely manner because of deficiencies in concentration, persistence, or pace. For example, children living with SCD may suffer from difficulties with attention and executive functioning that emerge from silent infarcts, causing them to repeat grades at higher rates than their peers or to need specialized education (Heitzer et al., 2021; Schatz, 2004; Schatz et al., 2001). In adults, limitations on full-time employment and advanced educational attainment stem from persistent or newly acquired difficulties with attention and executive functioning from silent cerebral infarcts, pain, unsupportive employers, and mental health difficulties (Ballas et al., 2010; Gil et al., 2004; Sanger et al., 2016; Vichinsky et al., 2010). Chapter 7 provides additional information about the effects of SCD on school and work attendance and performance.
LIVED EXPERIENCE OF APPLYING FOR SOCIAL SECURITY ADMINISTRATION DISABILITY
Although not entirely unique to individuals living with SCD, the experiences that these individuals have in applying for disability can be challenging
and frustrating, at times requiring external assistance to navigate the process, such as from legal and health care technology firms. The chief executive officer (CEO) of a community-based organization highlighted how individuals living with SCD often face barriers in navigating the system.
“Testimonies revealed that the majority face repeated denials, often giving up due to the emotional and financial toll of the process. Many endure years—sometimes over a decade—applying multiple times before receiving approval.”
—CEO of a community-based organization1
“Applying for Social Security [disability benefits] is challenging and discouraging.…[I]t takes so long for everything to be processed, and even then you still can be denied. Even when you really need it. I remember a time when I was doing well. I was working, going to school, able to support myself, and more. I managed to get off [Supplemental Security Income, SSI], then life happened, and I had a stroke. In that process of applying for SSI again, I was denied twice and almost lost my place because I was behind 3 months on my rent. I had to get an attorney to fight for me.…[T]hat was awful.”
—Adult living with SCD2
Health care providers who have worked with individuals living with SCD to access disability benefits describe the arduous process. A retired nurse and mother described the process of applying for benefits for her son with SCD. The family faced procedural barriers such as being kept on hold on the telephone and requirements to apply in person, which required the family to use time off. Ultimately,
“[The family] gathered all the required paperwork, only to face a devastating denial. Despite [my son’s] long history of severe health complications related to SCD—including heart failure, seizures, strokes, avascular necrosis, epilepsy, and respiratory issues—SSA determined he did not qualify for [Social Security Disability Insurance (SSDI)]. The SSA process did not provide clear guidance, and [I] later learned that [my son] had never met the 6,000-hour work requirement needed for SSDI eligibility. [He] had graduated high school in 2002, meaning he could not have possibly accumulated
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1 Excerpt from Call for Perspectives response.
2 Excerpt from Call for Perspectives response.
the necessary work hours. Instead, he should have been directed toward Supplemental Security Income, a program for individuals with disabilities who have limited work history.”
—Retired nurse and parent of a person with SCD3
While research has established the multiple ways in which SCD affects clinical and social functioning, SCD’s disability status has been contested at times (Srikanthan, 2023). In response to a Freedom of Information Act request by Community Legal Services (CLS) to SSA, CLS determined that “over 75 percent of SSI child disability applications for children with medically diagnosed and documented SCD were denied SSI in the 2016 to 2021 period” (Stein, 2025). As previously discussed, however, there are many pathways for individuals with SCD to qualify for SSI disability, including on the basis of impairments that are related, but not specific, to SCD, such as damage to the central nervous system and other organs. Approaches that integrate whole-person assessment and account for structural bias in clinical documentation have been used to improve outcomes for individuals living with SCD, and a similar whole-person approach might help improve SSA’s approach to disability evaluations for applicants with SCD.4
The complexity of applying for SSA disability parallels the complexity of living with SCD. To acknowledge the complexity of the condition, a whole-person approach is important for delivering health care to those living with SCD (Knisely et al., 2025). In health care, a whole-person approach “involves looking at the whole person—not just separate organs or body systems—and considering multiple factors that promote either health or disease” (NCCIH, 2021). Like a life-course approach, a whole-person approach recognizes that improving health care outcomes requires contextualizing an individual’s experiences within the larger experiences of life. In nursing, implementing a whole-person approach for SCD is recommended to address health care needs and remove barriers to accessing and navigating the complex health care system for individuals who, as discussed in prior chapters, live with a significant burden of disease in a fragmented health care system (Knisely et al., 2025). In the context of disability, a whole-person approach is aligned with the current SSA practice of evaluating multiple medical and nonmedical sources of documentation in an evaluation process that focuses not only on clinical effects but also on broader functional and social effects like work and school absences.
In SCD, given the systemic disbelief that individuals face about their health and SCD-related symptoms, a philosophy of the value of lived
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3 Excerpt from Call for Perspectives response.
4 This paragraph was revised after release of the report to specify the origin of the information and to clarify that there are multiple pathways to qualify for SSI disability.
expertise is often emphasized to improve health care outcomes (Miles et al., 2019). Qualification for SSA disability relies on detailed and reliable documentation from health care providers, but health care providers’ level of knowledge about SCD may affect both the quantity and the quality of the information they record in a patient’s chart. Individuals living with SCD report facing skepticism about their pain in the clinical encounter, which may lead to self-discharge (Elander et al., 2004), thereby curtailing the amount of information provided in the medical record. Despite this skepticism, individuals hold experiential knowledge about their bodies. Research has found that despite suspicion from clinicians, behaviors that raised concerns related to pain medication were more likely to be signs of patients trying to adequately manage their pain rather than signs of drug-seeking behavior (Elander et al., 2004). Such skepticism may also affect the quality of the information in the medical record, reflecting a clinician’s misunderstanding of SCD and a potential bias against the patient and the patient’s self-reported experience of pain.
People with other conditions also experience these documentation challenges. The National Academies of Sciences, Engineering, and Medicine conducted a workshop, Health Disparities in the Medical Record, that presented evidence of bias in clinical notes (NASEM, 2024). While these biases may lead to the underreporting of pain and functional impairment, they may also affect the quality of the record in the eyes of SSA examiners. One adult living with SCD highlighted the need to recognize biases and a lack of provider education by saying,
“The notion that we are all drug dependent or addicted, without proper diagnosis of ‘opioid’ dependency/addiction or supporting data, is the rationale for denying us pain management in emergency rooms and during admission. This erroneous information is being put into people’s [electronic medical records].”
—Adult living with SCD5
A whole-person approach to evaluating disability in applicants with SCD would acknowledge both the invisible, episodic nature of SCD, including the experience of symptoms such as pain and fatigue, and the cumulative and multisystem burden of the disease. Such an approach could potentially offset some of the social and structural barriers faced by individuals with SCD, where documented evidence may be scarce because of bias in the clinical encounter.
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5 Excerpt from Call for Perspectives response.
SOCIAL SECURITY LISTINGS SPECIFIC TO SICKLE CELL DISEASE
As Chapter 1 describes, SSA disability in adults is defined as follows:
inability to engage in substantial gainful activity [defined by an earnings threshold] by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.6
In children under age 18, SSA disability is defined as having the following:
a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.7
In both adults and children, a finding of disability depends on the severity of functional limitations arising from the applicant’s impairment or combination of impairments.
Adults are evaluated using a five-step process, and children are evaluated using a three-step process, as Chapter 1 explains. Step 3 of the process for both adults and children involves considering whether an applicant’s impairment or combination of impairments meets or medically equals criteria in SSA’s Listing of Impairments for Adults or Listing of Impairments for Children, respectively. If the applicant’s impairment(s) does not meet or medically equal the criteria in any of the listings, adult applicants are evaluated further at steps 4 and 5 based on their residual functional capacity, while child applicants are assessed to determine whether their condition(s) functionally equals the severity of the listings, based on their functioning in six domains:
- moving about and manipulating objects,
- acquiring and using information,
- attending and completing tasks,
- interacting and relating with others,
- caring for [oneself], and
- health and physical well-being.8
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6 42 USC § 416(i).
7 42 USC §1382c.
8 20 CFR 416.962a.
Box 8-1 includes selected SSA listings that are specific to SCD for adults (7.05, 7.18) and children (107.05). The criteria included in Listings 7.05 and 107.05 are the same for both groups. Chapters 2 through 4 of this report explain why the committee concluded that criteria under Listings 7.05 and 107.05 A and B are too restrictive. People living with SCD who experience frequent emergency department visits, hospitalizations, and/or the need for parenteral opioid pain management and currently qualify for disability under these listing criteria would continue to do so. However, there are many other people living with SCD who do not meet these criteria despite experiencing equivalent levels of pain, functional limitations, and disease severity. An individual who experiences some combination of multiple hospitalizations and vaso-occlusive pain crises requiring medical treatment in inpatient and outpatient settings is likely to be as severely affected as someone who has only a specified number of pain crises managed in the emergency department or hospitalizations per the current listings.
As Chapter 7 describes, SCD’s chronic and multisystem nature and its heterogenous presentation mean that focusing on a single set of symptoms or effects on a single body system is unlikely to capture the full burden or severity of disease experienced by individuals living with SCD, including effects on their day-to-day functioning. Considering the cumulative burden of SCD across all body systems is critical, especially when none of the effects on individual body systems is sufficient to meet or medically equal any of SSA’s current listing criteria. For these reasons, as well as those mentioned in the previous section, a whole-person approach to the evaluation of disability in applicants with SCD might more successfully capture the cumulative burden of the disease and its effects on individuals’ functioning.
Indeed, Listing 7.18 seems to reflect such a whole-person approach by considering “repeated complications of hematological disorders…but without the requisite findings for those listings, or other complications… resulting in significant, documented symptoms or signs” and a marked limitation on “activities of daily living” or “maintaining social functioning” or “completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.” A limitation is “marked” if “the symptoms and signs of [one’s] hematological disorder interfere seriously with [one’s] ability to function” (SSA, n.d.-a, 7.00G4). “Marked” would be the equivalent of “the fourth point on a five-point scale consisting of no limitation, mild limitation, moderate limitation, marked limitation, and extreme limitation,” if such a scale were used (SSA, n.d.-a, 7.00G4).
Although Listing 7.18 specifies only a few potential complications of SCD, the listing provides examples and is not meant to be inclusive. Along with SCD-related health conditions such as those identified in Chapters 6 and 7, Listing 7.18 accounts for SCD-related symptoms such as pain and severe fatigue. By potentially capturing the wide range of health effects
BOX 8-1
Selected SSA Listings Specific to SCD
7.05 [and 107.05] Hemolytic anemias, including sickle cell disease, thalassemia, and their variants (see 7.00C [107.00C]), with:
A. Documented painful (vaso-occlusive) crises requiring parenteral (intravenous or intramuscular) narcotic medication, occurring at least six times within a 12-month period with at least 30 days between crises.
OR
B. Complications of hemolytic anemia requiring at least three hospitalizations within a 12-month period and occurring at least 30 days apart. Each hospitalization must last at least 48 hours, which can include hours in a hospital emergency department or comprehensive sickle cell disease center immediately before the hospitalization (see 7.00C2 [107.00C2]).
OR
C. Hemoglobin measurements of 7.0 grams per deciliter (g/dL) or less, occurring at least three times within a 12-month period with at least 30 days between measurements.
7.18 Repeated complications of hematological disorders (see 7.00G2) including those complications listed in 7.05, 7.08, and 7.10 but without the requisite findings for those listings, or other complications (for example, anemia, osteonecrosis, retinopathy, skin ulcers, silent central nervous system infarction, cognitive or other mental limitation, or limitation of joint movement), resulting in significant, documented symptoms or signs (for example, pain, severe fatigue, malaise, fever, night sweats, headaches, joint or muscle swelling, or shortness of breath), and one of the following at the marked level (see 7.00G4)
A. Limitation of activities of daily living (see 7.00G5).
B. Limitation in maintaining social functioning (see 7.00G6).
C. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace (see 7.00G7).
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NOTE: The criteria specified in Childhood Listing 107.05 and Adult Listing 7.05 are the same. Listing 7.18 is specific to adults with no corresponding listing criteria for children.
SOURCES: SSA, n.d.-a,n.d.-b.
associated with SCD and their effects on certain types of functioning, Listing 7.18 incorporates something like a whole-person approach to determining the severity of SCD experienced by an applicant for SSA disability.
However, Listing 7.18 is unique to adults, with no corresponding listing for children, perhaps because children are evaluated using functional equivalence criteria (SSA, 2017, p. 43444, note 14). However, specifying a childhood listing equivalent to Listing 7.18 could yield benefits. First, it would clarify that similar criteria for disability are considered for children with SCD under the concept of functional equivalence. Applicants, health care providers, educators, and others who provide evidence for disability determinations but are not familiar with the concept of “functional equivalence” might better understand the type of information that is useful to SSA in evaluating the cumulative burden of SCD on a child applicant. Second, a childhood listing equivalent to Listing 7.18 could help facilitate the redetermination process at age 18 and potential qualification for adult disability. The same type of information required to qualify under Listing 7.18 would already be familiar and potentially available in the applicant’s file from childhood.
CONSIDERATIONS PERTAINING TO THE CUMULATIVE BURDEN OF SICKLE CELL DISEASE
Despite the promise of Listing 7.18 as a whole-person approach for capturing the severity of SCD experienced by an applicant for SSA disability, the listing does not fully capture the cumulative burden of living with SCD, including its effects on participation in work or school (e.g., absences, presenteeism, performance) and whether those effects are the result of the disease itself or medical treatment related to the disease.
Another challenge with a listing like 7.18 is obtaining the necessary information from medical and other sources to document the full range of SCD-related health conditions and symptoms an individual living with the disease experiences and their effects on the person’s functioning. Individuals receiving care at a comprehensive SCD care center are likely to have the most complete information in their medical record, including the results of patient-reported outcomes over time, but many other people living with SCD will not have such a complete and integrated medical record. Factors affecting the ability to obtain the documentation SSA needs to make a disability determination include, as Chapter 7 describes, the often fragmented nature of health care, the shortage of health care providers with specialty training in SCD, the biases that may be introduced into the medical record by health care providers unfamiliar with SCD, and a lack of familiarity among many health care providers about specific SSA listing criteria and the type of information SSA needs to make disability determinations (Stein, 2025).
One solution would be to use evaluation templates or forms specific to SCD for collecting information from health care providers. Appendix B contains two examples of draft forms, one for adults and one for children, that the committee lightly adapted from materials submitted to it by Community Legal Services, Inc., Philadelphia (Stein, 2025). Such forms could be completed by the health care provider(s) treating an applicant with SCD and returned to SSA along with the relevant medical records. There is precedent for such an approach, since SSA uses similar forms to collect information directly relevant to the SSA listings for human immunodeficiency virus (HIV) infection (Listings 14.11 [adult] and 114.11 [child]) from health care providers for adult and child applicants with HIV (SSA, 2023a,b; Stein, 2025). Using such forms would facilitate collecting comprehensive information about an applicant’s SCD-related health conditions and symptoms. Information collected on the cumulative burden of SCD could help inform consideration of combinations of vaso-occlusive pain crises, hospitalizations, chronic pain, severe fatigue, and SCD-related health conditions across different body systems, including depression, anxiety, or trauma, experienced by the individual as well as their effect on the person’s functioning.
SUMMARY AND CONCLUSIONS
SCD is a lifelong condition that affects multiple systems of the body, which may lead to end-organ damage and early mortality. A large body of literature shows that individuals living with SCD experience disability, defined as limitations on the types of activities and social participation in which they can engage. Such limitations emerge from the complex clinical and social implications of living with SCD. The complex nature of the condition requires a whole-person approach to delivering health care to individuals living with SCD. Similarly, in the context of SSA disability, a whole-person approach is aligned with the current SSA practice of evaluating multiple medical and nonmedical sources of documentation.
Limitations in health care providers’ knowledge about SCD may affect both the quantity and the quality of the information they record in a patient’s chart. A whole-person approach to evaluating disability in applicants with SCD would acknowledge not only the invisible, episodic nature of SCD, including the experience of symptoms such as pain and fatigue, but also the cumulative and multisystem burden of the disease. Such an approach also could potentially offset some of the social and structural barriers that individuals with SCD face, where documented evidence may be scarce because of bias in the clinical encounter.
Because of SCD’s chronic and multisystem nature, focusing on a single set of symptoms or effects on a single body system is unlikely to capture
the full burden or severity of disease experienced by individuals living with SCD, including effects on their day-to-day functioning. Considering the cumulative burden of SCD across all body systems is critical, especially when none of the effects on individual body systems are sufficient to meet or medically equal any of SSA’s current listing criteria for those conditions. By potentially capturing the wide range of health effects associated with SCD and their effects on certain types of functioning, Listing 7.18 incorporates something like a whole-person approach to determining the severity of SCD experienced by an applicant for SSA disability. Indeed, the cumulative medical and social burden of the multiple conditions associated with SCD often results in functional impairment that is comparable in severity to the criteria specified in Listing 7.18.
Listing 7.18 is unique to adults, however, with no corresponding listing for children, and specifying a listing equivalent to 7.18 for children could yield benefits. Such a listing would clarify that similar criteria for disability are considered for children with SCD under the concept of functional equivalence, allowing applicants and other sources who provide evidence for disability determinations to better understand the type of information that is useful to SSA when evaluating the cumulative burden of SCD on a child applicant. In addition, a childhood listing equivalent to Listing 7.18 also could help facilitate the redetermination process at age 18, a transition period from childhood to adulthood that is a particularly vulnerable and complex time for young adults. The same type of information required to qualify under Listing 7.18 would already be familiar and potentially available in the applicant’s file from childhood.
Despite the promise of Listing 7.18 as a whole-person approach for capturing the severity of SCD experienced by an applicant for SSA disability, it does not fully capture the cumulative burden of living with SCD, including its effects on participation in work or school. Another challenge associated with a listing like 7.18 is obtaining the necessary information from medical and other sources to document the full range of SCD-related health conditions and symptoms experienced by an individual living with the disease and their effects on the person’s functioning. Individuals who receive care at a comprehensive SCD care center will likely have the most complete information in their medical record, but many other people living with SCD will not have such a complete and integrated medical record. Using evaluation templates or forms specific to SCD for collecting information from health care providers could help address this challenge and facilitate the collection of comprehensive information about an individual’s SCD-related health conditions and symptoms.
Based on its review of the literature and its expert assessment, the committee reached the following conclusions:
Conclusion 8-1: Using all sources of information supports a whole-person approach to disability evaluation and is an important method to mitigate gaps and balance potential biases in information in the medical and other records.
Conclusion 8-2: The change in the Social Security Administration’s determination process for children and adults introduces challenges for establishing or sustaining disability benefits across the 18-year-old threshold.
Conclusion 8-3: The cumulative medical and social burden of sickle cell disease (SCD) is an important consideration in making disability determinations.
Conclusion 8-4: The cumulative medical and social burden of the multiple conditions associated with SCD often results in functional impairment that is comparable in severity to the criteria specified in Listing 7.18.
Conclusion 8-5: A childhood listing equivalent to Listing 7.18 for adults would clarify that similar criteria for disability are considered for children with SCD under the concept of functional equivalence.
REFERENCES
Ballas, S. K., R. L. Bauserman, W. F. McCarthy, and M. A. Waclawiw. 2010. The impact of hydroxyurea on career and employment of patients with sickle cell anemia. Journal of the National Medical Association 102(11):993–999.
Eaton, M. L., J. S. Haye, F. D. Armstrong, C. H. Pegelow, and M. Thomas. 1995. Hospitalizations for painful episodes: Association with school absenteeism and academic performance in children and adolescents with sickle cell anemia. Issues in Comprehensive Pediatric Nursing 18(1):1–9.
Elander, J., J. Lusher, D. Bevan, P. Telfer, and B. Burton. 2004. Understanding the causes of problematic pain management in sickle cell disease: Evidence that pseudoaddiction plays a more important role than genuine analgesic dependence. Journal of Pain and Symptom Management 27(2):156–169.
Gil, K. M., J. W. Carson, L. S. Porter, C. Scipio, S. M. Bediako, and E. Orringer. 2004. Daily mood and stress predict pain, health care use, and work activity in African American adults with sickle-cell disease. Health Psychology 23(3):267–274.
Gordon, R. D., R. L. Welkie, N. Quaye, J. S. Hankins, A. A. Kassim, A. A. Thompson, M. Treadwell, C. J. Lin, and R. M. Cronin. 2024. Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease. Blood Advances 8(5):1143–1150.
Heitzer, A. M., L. Hamilton, C. Stafford, J. Gossett, L. Ouellette, A. Trpchevska, A. A. King, G. Kang, and J. S. Hankins. 2021. Academic performance of children with sickle cell disease in the United States: A meta-analysis. Frontiers in Neurology 12:786065.
Holdford, D., N. Vendetti, D. M. Sop, S. Johnson, and W. R. Smith. 2021. Indirect economic burden of sickle cell disease. Value in Health 24(8):1095–1101.
Idowu, M., T. H. Chung, and K. Yu. 2018. Association between employment status and hospitalization of patients with sickle cell disease: A retrospective, observational pilot study. Blood 132(Suppl 1):4930.
Knisely, M., J. Prvu-Bettger, J. J. Strouse, and P. Tanabe. 2025. Improving the quality of whole-person healthcare delivery: Critical components of a sickle cell disease nurse navigator role. Professional Case Management 30(6):251–260.
Miles, S., A. Renedo, C. Augustine, P. Ojeer, N. Willis, and C. Marston. 2019. Obstacles to use of patient expertise to improve care: A co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings. Critical Public Health 30(5):544–554.
NASEM (National Academies of Sciences, Engineering, and Medicine). 2024. Health disparities in the medical record and disability determinations: Proceedings of a workshop. Washington, DC: The National Academies Press.
NCCIH (National Center for Complementary and Integrative Health). 2021. Whole person health: What it is and why it’s important. https://www.nccih.nih.gov/health/whole-person-health-what-it-is-and-why-its-important (accessed August 7, 2025).
Rizio, A. A., M. Bhor, X. Lin, K. L. McCausland, M. K. White, J. Paulose, S. Nandal, R. I. Halloway, and L. Bronté-Hall. 2020. The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease. Quality of Life Research 29(6):1533–1547.
Sanger, M., L. Jordan, S. Pruthi, M. Day, B. Covert, B. Merriweather, M. Rodeghier, M. DeBaun, and A. Kassim. 2016. Cognitive deficits are associated with unemployment in adults with sickle cell anemia. Journal of Clinical and Experimental Neuropsychology 38(6):661–671.
Schatz, J. 2004. Brief report: Academic attainment in children with sickle cell disease. Journal of Pediatric Psychology 29(8):627–633.
Schatz, J., R. T. Brown, J. M. Pascual, L. Hsu, and M. R. DeBaun. 2001. Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease. Neurology 56(8):1109–1111.
Schwartz, L. A., J. Radcliffe, and L. P. Barakat. 2009. Associates of school absenteeism in adolescents with sickle cell disease. Pediatric Blood & Cancer 52(1):92–96.
Srikanthan, S. 2023. Contested disability: Sickle cell disease. Health & Social Work 48(3): 209–216.
SSA (Social Security Administration). 2017. Social Security ruling, SSR 17-3p: Titles II and XVI: Evaluating cases involving sickle cell disease (SCD). Federal Register 82(178): 43442–43445.
SSA. 2023a. Form SSA-4814: Medical report on adult with allegation of human immunodeficiency virus (HIV) infection. https://www.ssa.gov/forms/ssa-4814.pdf (accessed August 7, 2025).
SSA. 2023b. Form SSA-4815: Medical report on child with allegation of human immunodeficiency virus (HIV) infection. https://www.ssa.gov/forms/ssa-4815.pdf (accessed August 8, 2025).
SSA. n.d.-a. Disability evaluation under Social Security: 7.00 Hematological disorders—Adult. https://www.ssa.gov/disability/professionals/bluebook/7.00-HematologicalDisorders-Adult.htm (accessed August 7, 2025).
SSA. n.d.-b. Disability evaluation under Social Security: 107.00 Hematological disorders—Childhood. https://www.ssa.gov/disability/professionals/bluebook/107.00-HematologicalDisorders-Childhood.htm (accessed August 7, 2025).
Stein, J. 2025. Memo to NASEM Sickle Cell Disease Disability Evaluation Committee members. Community Legal Services, Inc., Philadelphia. Submitted to committee on February 25, 2025.
Swanson, M. E., S. D. Grosse, and R. Kulkarni. 2011. Disability among individuals with sickle cell disease: Literature review from a public health perspective. American Journal of Preventive Medicine 41(6 Suppl 4):S390–S397.
Vichinsky, E. P., L. D. Neumayr, J. I. Gold, M. W. Weiner, R. R. Rule, D. Truran, J. Kasten, B. Eggleston, K. Kesler, L. McMahon, E. P. Orringer, T. Harrington, K. Kalinyak, L. M. De Castro, A. Kutlar, C. J. Rutherford, C. Johnson, J. D. Bessman, L. B. Jordan, and F. D. Armstrong [on behalf of the Neuropsychological Dysfunction and Neuroimaging Adult Sickle Cell Anemia Study Group]. 2010. Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia. JAMA 303(18):1823–1831.
