Community advocates come together to acknowledge the importance of celebrating World Sickle Cell Day in conjunction with Juneteenth.
Every year, World Sickle Cell Day works to bring awareness to the genetic disease that impacts millions of people worldwide, and disproportionately affects the Black community.
In Delaware, the focus is on education, improving care, and reducing disparities. And that starts with knowing whether or not an individual has sickle cell.
In 1987, theU.S. recommended all babies be tested for sickle cell at birth. However, it wasn’t until 2006 that it was required and provided for all newborns. That means many Americans may not be aware of their status, and haven’t been able to seek proper care because of that.
“We have to ensure that individuals with sickle cell disease, when they’re young children, they’re given penicillin prophylaxis so that they don’t develop sepsis and other complications. As they grow older we’re screening for stroke risk and assure they’re getting treatment as needed. And educating individuals about hydroxyurea and other therapies that now exist for sickle cell disease,” said Dr. Edward Ivy, Vice Chief Medical Officer of the Sickle Cell Disease Association of America.
A simple test can open the door to these life-altering treatments.
“It requires just one tiny drop of blood from the finger. And in just 5 minutes we can determine if they have the trait or if they have the disease,” said TOVA Healthcare founder Dr. Nina Anderson, whose team brought free sickle cell screenings to the community on Juneteenth.
Treatment for sickle cell can start at any age, and requires a holistic approach. As individuals get older, the disease can present itself in different ways, and comorbidities can develop.
Community healthcare organizations like TOVA play a big role in providing comprehensive care- recognizing that treating sickle cell means treating the whole person.
And on top of regular healthcare visits, that includes addressing the issues in accessing the specialized care Dr. Ivy outlined that come from factors such as distance to a specialist, income, and overall availability.
Community is the key.
By providing education, outreach, and advocacy, TOVA is one of many organizations worldwide working to create a community of people who can extend a helping hand to those who don't have the means to seek treatment.
And at the same time, they are working to make changes on a grand scale to assure that barriers to treatment no longer exist in the future.
For more information on TOVA Community healthcare, visit tovacommunityhealth.org.
