Did you know that patients with SCD have the highest rate of return to hospital within 30 days of discharge? But according to the CDC, health care providers can question the severity of a patient’s pain, creating long wait times for patients to get the medication they need during their hospital stay. I’ve heard stories of patients waiting hours to be treated when they’re in severe pain.
These restrictions have consequences. For example, although SCZ is the most common and clinically significant hereditary blood disorder in the entire country, there is a surprising lack of longitudinal studies — research common in disease states that affect far fewer people.
You can help by learning about SCD from trusted organizations such as the Sickle Cell Disease Association of America. In everything you do, speak of sickle cell disease as a disease that affects children, children you know as neighbors, friends or family. Contact members of Congress and demand fair federal funding for sickle cell research.
It’s time more people got screened for the sickle cell trait. My husband and I were screened. Luckily we don’t have the trait, but that doesn’t stop us from having direct and frank discussions about sickle cell disease with our children, friends and family.
But access to many medical care remains difficult. The Sickle Cell Disease Association of America recently announced a “one-stop-shop” website for finding clinical trials. You can now search for sickle cell disease clinical trials by location, stage, study type or relevant keywords through an easy-to-navigate, centralized digital platform: www.sicklecelldisease.net/scdaa-trial-finder/. We hope this resource will make the right and available treatment more accessible to more people in more places by making the hunt for clinical trials for sickle cell disease less arduous and frustrating.
Companies can also help. Aflac has contributed more than $155 million to the Aflac Cancer and Blood Disorders Center in Atlanta, which includes the largest SCD program in the nation. In 2022, our award-winning My Special Aflac Duck® program – created to address the psychosocial needs of children with cancer – will be introduced to the pediatric SCD community and include new features designed to meet the needs of children with cancer. children with sickle cell disease.
Isn’t now the time to raise awareness of sickle cell disease and help improve the lives of 100,000 children and adults? The short answer – the only answer – is yes.
Audrey Boone Tillman is the first black American and the first woman to hold the title of General Counsel at Aflac Inc.