Financial Impact of Sickle Cell Disease

Sickle cell disease (SCD) has a large financial impact on people. People with SCD have a much lower lifetime income because of shorter life expectancy and reduced employment. They often also have significant costs associated with hospital visits and treatments.

If SCD complications prevent you from working, consider applying for disability insurance. The Social Security Administration offers benefits to people who cannot work because of debilitating health conditions. Discuss your eligibility with your doctor and talk to them for help in applying for benefits.

How is income impacted by sickle cell disease?

People with SCD have a lower lifetime income because of employment differences and reduced life expectancy. The life expectancy for people with SCD is about 54 years, which is about 25 years shorter than the general population. The average lifetime income for people with SCD is about $1.2 million, compared to $1.9 million for people without SCD. This means that people with SCD earn about $700,000 less during their lifetime.^1,2

These estimates do not take into account other ways that SCD reduces income. This includes:³

• Lost workdays for illness
• Lost educational potential
• Lost time from work for parents or caregivers
• Time spent in facilities receiving care

SCD also has a negative impact on employment rates and job retention. These factors combine to cause people with SCD to make much less money during their lifetime.⁴

What are the additional costs?

People with SCD have high healthcare costs. Total healthcare costs usually rise with age, from about $900 per month for children under 10 years old to $2,500 per month for adults older than 50 years old. By age 45, total healthcare costs reach almost $1 million.⁵

About 80 percent of healthcare costs for people with SCD are associated with hospital visits. Other costs include:^5,6

• Emergency department use
• Doctor’s visits
• Prescription drugs
• Home healthcare
• Nursing home care

To reduce costs, people with SCD need treatments that prevent hospital readmissions and reduce the length of hospital stays. For example, hydroxyurea reduces hospitalization costs by about $5,000 per year on average.^7,8

Most people with SCD are covered by Medicaid, Medicare, or private health insurance. Talk to your doctor or insurance company about your healthcare costs and ways to reduce them.

Are people with SCD eligible for disability insurance?

The Social Security Disability Insurance (SSDI) program provides benefits for people who have worked enough and paid Social Security taxes on income. These benefits include monthly payments and medical care. If SCD has prevented you from working, you may be eligible to receive SSDI benefits.⁹

Having SCD does not automatically make you eligible for SSDI benefits. In order to qualify, you must be considered “permanently disabled.” This means that SCD must either:¹⁰

• Prevent you from working for a year or more; or
• Be life-threatening

During your application process, the Social Security Administration collects your medical information. There must be medical documentation that you have SCD. This is usually a lab report signed by a doctor. They will then look at your medical records to determine if you meet the requirements. Some factors that help determine if you are eligible are:^11-13

• Painful crises requiring injected or IV opioids at least 6 times within the last year, with at least a month between episodes
• Complications of anemia requiring at least 3 hospital stays within the last year, with at least a month between each stay
• Low hemoglobin measurements at least 3 times within the last year, with at least a month between each measurement

Visit your doctor regularly and undergo treatments to prevent and treat complications. Without doing this, they will not consider your condition severe enough. Even if you do not meet these criteria, there are other ways to be approved for benefits. Talk to your doctor to get help putting together your application for SSDI benefits.