Age Is Just a Number: Confronting Life Expectancy With Sickle Cell

Today, progress in treating and managing sickle cell disease (SCD) is helping people with the condition live longer than ever before.

In the 1970s, the average life expectancy of a person with SCD was just 14 years old. More recently, that number rose to 40 to 45 years old. Today, studies show people with SCD can expect to live to around 61 years old. To put that number into context, the life expectancy of most people in the United States is about 77 years old.^1,2

New sickle cell disease therapies

Many medical treatments aim to help people to live longer, healthier lives. Since 2017, the US Food and Drug Administration (FDA) has approved a few new therapies for SCD.

For example, Endari™ (L-glutamine) and Adakveo® (crizanlizumab-tmca) help ease pain crises in people with SCD. Before these drugs, hydroxyurea was the only approved medicine for SCD.^3,4

Doctors and researchers also continue to look at bone marrow or stem cell transplants as a cure for sickle cell disease. During this procedure, doctors replace your bone marrow stem cells with healthy bone marrow stem cells from a donor.⁴

These therapies have not been available long enough to know their impact on life expectancy in people with sickle cell. Researchers will continue to carry out studies to find out how well they work.

Sickle cell disease care

Longer lives are also the result of better care for people living with SCD. Doctors now screen newborns for the condition, and there is more education on problems that can arise from SCD.⁵

One study looked at trends in hospital death rates due to SCD. Researchers found that while people with the condition are living longer, health insurance status, income, and where you live all impact life expectancy.³

They are also studying the role of race-related health disparities in sickle cell life expectancy. Health disparity is a term doctors use to explain differences in health between groups of people. SCD affects Black Americans more often than people of other races and ethnicities in the United States. Some with SCD say doctors ignore or minimize their symptoms. This dismissal can result in poorer care and worse outcomes, including death.⁶

Sickle cell disease also receives notably less research funding and fewer therapies than comparable illnesses. These diseases, like cystic fibrosis, tend to affect more white Americans.^3,6

The experiences of older adults with sickle cell disease

Even though people with SCD are now living longer, researchers still have a lot to learn about older adults with the condition. More knowledge will help doctors better serve this group as they age.

Researchers interviewed a small group of people ages 50 to 71 about life with SCD. The group talked about challenges like keeping a job, physical restrictions, and other health issues like fatigue.¹

Many also expressed that with age comes more awareness about SCD. These older adults now feel more confident preparing for and managing pain crises. And, their beliefs about life expectancy have evolved. While doctors only expected them to live to age 18, they trusted that they would live long through healthy lifestyle choices.¹