What is the Cost of Living with Sickle Cell Disease?

It’s no secret that living with a rare or underserved condition can come alongside a heavy financial burden. A recent study supported by the National Institutes of Health (NIH), Cure Sickle Cell Disease Initiative, and National Heart, Lung, and Blood Institute (NHLBI) evaluated the cost of living associated with sickle cell disease (SCD). According to a news release from the NIH, the study, published in Blood Advances, analyzed healthcare spending and commercial insurance in relation to SCD. The study found that those with SCD (aged 64 or younger) pay, on average, 4x more for care than those without this condition.

Evaluating the Cost of Living

Within this particular study, researchers analyzed healthcare spending in relation to various conditions. To begin, researchers looked at commercial health insurance claims filed over an 11-year period. Altogether, there were claims from 20,891 individuals with SCD as well as claims from 33,588 age- and gender-matched controls. Findings included:

  • Individuals with sickle cell disease often required more medications, urgent care and ER visits, and doctor’s appointments than those who do not have sickle cell disease. 
  • While those without sickle cell disease did sometimes have out-of-pocket costs associated with medical care, these costs were higher for those with SCD (on average, $1,300 yearly). This represents up to $44,000 over the course of someone’s entire life. 
  • Obstacles associated with SCD, including job complications related to their condition, can cost individuals up to $700,000, researchers hypothesize. 
  • While commercial health insurers may pay an average of $1.7M for every individual with sickle cell disease, the cost may be higher when considering Medicaid or Medicare. 
  • Patients rack up the highest amount of costs between the ages of thirteen and twenty-four. 

Ultimately, the healthcare analysis found that there is a high financial burden associated with sickle cell disease and its care within the United States. While there are some therapies available, it is crucial to find ways to provide more access and affordable care for patients in the future.

About Sickle Cell Disease (SCD)

Sickle cell disease (SCD) refers to a group of inherited red blood cell disorders characterized by malformed, sickle-shaped red blood cells. It results from a mutation in the gene responsible for producing hemoglobin. Normally, hemoglobin helps transport oxygen throughout the body. However, in those with sickle cell disease, the abnormal blood cells get caught along blood vessel walls. This restricts blood flow and comes with a variety of other health impacts. Risk factors associated with sickle cell disease include a family history of SCD, as well as being African-American. Symptoms can include:

  • Jaundice (yellowing of the skin, eyes, and mucus membranes)
  • Pain crisis
  • Fatigue
  • Delayed growth
  • Swollen hands and feet
  • Organ damage
  • Anemia (low red blood cell count) 
  • Acute chest syndrome
  • Priaprism
  • Stroke
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email