Sickle cell disease (SCD) is not automatically a disability by law. However, people who experience debilitating symptoms may qualify for disability benefits, and several laws protect them from discrimination.
The
This article examines whether SCD is a disability, discussing the laws that protect people with SCD and whether they are eligible for benefits.
It will also detail the symptoms that people with SCD may experience and the complications they may face.
Healthcare professionals, several federal laws, and the Social Security Administration (SSA) consider people with severe SCD symptoms and complications to have a disability. However, this may not be true for people with mild SCD symptoms.
According to the
SCD is a lifelong genetic disorder involving abnormalities in the formation of red blood cells. Symptoms typically appear at about
People with SCD experience periods of extreme pain, known as pain crises, fatigue, and various complications affecting multiple organ systems that impact their daily lives.
In severe cases, these complications prevent a person from working and studying and can result in numerous hospital stays and significant financial burdens.
The law does not automatically consider SCD a disability. However, several laws give people rights when physical or mental disabilities affect their everyday activities.
Many people with SCD satisfy the legal requirements for disability rights because they frequently experience fatigue or severe pain during daily activities.
The following laws and benefits protect and support people with SCD:
Employment
For some people with SCD, finding and keeping a job can be challenging. They may regularly miss work due to medical appointments or complications arising from SCD. Fatigue and recurring pain can interfere with daily work activities.
However, certain laws protect employees and job applicants with SCD from discrimination.
Americans with Disabilities Act
The Americans with Disabilities Act (ADA) is a federal civil rights law prohibiting discrimination against people with disabilities in employment and public places.
According to the ADA, a person has a disability when:
- they have physical or mental impairments that significantly limit major life activities
- they have a history of a disability
- others perceive them as having an impairment
According to the Equal Employment Opportunity Commission, the ADA requires employers to provide “reasonable accommodations,” such as working flexible hours or a guaranteed parking space near the building, to employees and job applicants.
The ADA is a law and not a benefits program, so people do not need to apply for coverage for it to protect them.
Family and Medical Leave Act
The Family and Medical Leave Act (FMLA) is a federal law that entitles eligible employees to take up to 12 weeks of job-protected leave each year for family or medical reasons.
People with severe health conditions most commonly take time off work through FMLA if they:
- need to stay overnight in a hospital
- are unable to work for more than 3 days in a row and require ongoing medical treatment
- have periods of disability resulting from their condition or treatment
FMLA leave is unpaid. However, people with vacation, personal, or sick time saved up with an employer may use their leave through FMLA to continue receiving pay.
Education
Several laws protect students with disabilities against discrimination and deprivation of the help they need to succeed academically. These include the following:
- ADA: This prohibits discrimination in public and private schools. It allows students with disabilities accommodations to participate in activities on campus, such as extra time to complete assignments, and off campus for sports leagues and camps.
- Individuals with Disabilities Education Act (IDEA): This is a federal law that ensures people aged 3–21 with disabilities can access free appropriate public education (FAPE) that schools tailor to their needs.
- Section 504 of the Rehabilitation Act: Students not eligible for services under IDEA may qualify for support under this act. Section 504 is a federal law that protects the rights of people with disabilities in activities and programs that receive financial assistance from the Department of Education. The Office for Civil Rights enforces Section 504, which requires qualifying students with disabilities to receive FAPE. A 504 Plan will differ depending on the person’s educational and medical needs.
- Other educational support: Children with SCD who do not require special instruction and special education services may have access to various support in the general classroom, such as accommodations or individualized health plans.
Disability benefits
If SCD complications leave a person unable to work, they may be eligible for disability benefits. Two SSA programs pay benefits to people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
SSDI supports people with disabilities with qualifying work credits through their own or a family member’s employment. People receiving SSDI typically qualify for Medicare 24 months after receiving disability payments.
SSI provides essential financial assistance to older adults and people with disabilities with limited income and resources. In most states in the U.S., a person receiving SSI automatically qualifies for healthcare coverage through Medicaid.
People must provide a laboratory report confirming a hematological or blood disorder that a doctor signs to verify their SCD diagnosis. The SSA uses several factors to decide whether a condition’s severity is genuinely disabling and a person is unable to work. These may include:
- Pain crises requiring intravenous narcotic medication. These must happen six or more times in 12 months, with 30 days or more between crises.
- Complications that result in at least three hospitalizations in 12 months and occur 30 days or more apart. The person must be in the hospital for at least 48 hours.
- Hemoglobin measurements of 7 grams per deciliter (g/dL) or below. These must occur at least three times in 12 months, with 30 days or more between measurements.
If a person with SCD meets one or more of the above requirements, they may be eligible for disability benefits.
For many people, SCD can cause long-term pain and multiple complications that may be disabling and reduce their life expectancy by around
Symptoms of SCD include:
- pain episodes
- anemia
- swelling of hands and feet
- vision problems
- delayed growth
- frequent infections
Common complications that people with SCD experience
- acute chest syndrome
- death of bone tissue (avascular necrosis)
- blood clots and deep vein thrombosis (DVT)
- pulmonary embolism
- fever
- harmful infections, such as flu, pneumonia, and meningitis
- kidney damage and chronic kidney disease
- leg ulcers
- liver disease
- organ damage
- painful erection of the penis, known as priapism
- high blood pressure in the lungs, or pulmonary hypertension
- sleep-disordered breathing, such as sleep apnea
- splenic sequestration, which is where red blood cells are trapped in the spleen, blocking blood flow
- stroke
- vision loss
SCD can lead to severe and life threatening health problems. People experiencing any of the following symptoms should seek immediate medical care or call 911:
- chest pain
- sudden weakness
- numbness on one side of the body
- trouble speaking, seeing, or walking
- confusion
- trouble breathing
- dizziness
- irregular heartbeat
- severe headache
- a fever of more than 101.3 ºF or 38.5 ºC
- an erection lasting for more than 4 hours
Laws do not automatically categorize SCD as a disability. However, the severe symptoms and complications that result from the condition are debilitating and qualify many people for disability rights and benefits.
People with disabilities have several civil rights laws that protect them from discrimination in the workplace, educational settings, and public places. Disability benefit programs are also available to support people who cannot work due to SCD.
People with SCD may face many challenges, including severe pain episodes and fatigue, leaving them unable to participate in normal daily activities.
Many people with SCD experience complications affecting multiple organ systems, resulting in them spending time in a hospital. Some complications are serious and require immediate medical help.