United to Conquer Sickle Cell Disease

Sickle Cell Disease Coalition

The state of sickle cell disease
Access to Care in the U.S.

75%+

of adults with SCD and frequent pain crises fail to get hydroxyurea, which is the recommended treatment.

Only 1 in 3

children with SCD receive appropriate monitoring for stroke by age 2.

Treatment value

Children not treated with hydroxyurea accrue over $500,000 more in health care costs than those who receive this treatment.

Training and Education

73%

of family physicians believe that more education and support tools would help avoid complications in managing SCD.

69%

of family physicians report that clinical decision support tools would be useful for treating SCD.

Only 20%

of family physicians report feeling comfortable treating people with SCD.

Research & Clinical Trials

Only 1 treatment

(hydroxyurea) is currently approved by the FDA to treat SCD in adults — it is often used off-label in children.

Stem cell transplantation

has shown success in curing some individuals with SCD, but it is not widely available.

90%+

of people with SCD today live well into adulthood, which poses new issues and challenges.

Global

90%+

of children with SCD do not survive to adulthood in resource-poor countries.

Approx. 1,000 children

are born with SCD in Africa every day, and more than half will die before the age of five.

30%

Growth in the number of people with SCD expected globally by 2050.

State of Sickle Cell Disease: 2016 Report

The State of Sickle Cell Disease: 2016 Report has been created by the American Society of Hematology based on the feedback of more than 100 thought leaders and representatives from other organizations to look at the state of SCD and identify the greatest opportunities for improvement. This report is a summary of the current state of research, access to care, and global issues, and it provides an outline of opportunities to change the status quo for people with this disease.

The status quo is unacceptable, and we are setting out to change it

People with sickle cell disease (SCD) are afflicted on two fronts — one by having a serious, chronic condition that inflicts pain and other complications — the other by a fragmented system of care.

Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with sickle cell disease and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.