A Game Changer on the Horizon for those Suffering with Sickle Cell Disease

Eric and La’Shardae Scott with sons Emory, Evan and Eric, Jr.

By Asia Nail
The Truth Reporter

The medical field triumphs as the FDA unfurls a groundbreaking treatment, heralding not just relief but a potential cure for Sickle Cell Disease (SCD). This revolutionary approach employs the power of gene editing technology, casting a ray of hope upon those grappling with debilitating blood disorders.

La’Shardae Scott is a beacon of progress for SCD warriors, shining a spotlight on a long-overlooked genetic disorder predominantly affecting African Americans. She is also the CEO/President of SCOTT, which stands for: Scott Center for Observation Treatment & Transition; a nonprofit organization dedicated to promoting sickle cell awareness, education and research.

“We specialize in facilitating the transition from pediatric to adult treatment,” explains Scott, soon to be Dr. Scott, in the field of Social Work this spring.

“The Scott Center will officially open its doors here in Toledo in 2024 as a safe space for those dealing with SCD. Our silent warriors.”

Scott refers to her clients and her children with SCD as silent warriors, encountering a resilience that transcends the physical realm.

“The pain they endure, both seen and unseen, becomes a testament to the strength that lies within,” she explains.  Each day is a battle against the unpredictability of the condition, and yet, they press on, embodying a quiet fortitude that deserves recognition.

Despite the prevalence of SCD within the Black community, there exists a lamentable lack of awareness and understanding. This lack perpetuates a stigma that further isolates these silent warriors. Breaking down these barriers requires a collective effort to raise awareness, dispel myths, and foster a culture of empathy and support.

Sickle Cell Disease, notorious for its excruciating pain, has found a new adversary in an FDA approved treatment called CASGEVY.

Over the past three weeks, this remarkable treatment received approval, utilizing a cutting-edge technology known as CRISPR gene editing. The intricate process involves extracting stem cells, the architects of sickle cells, from patients. Following this, a round of chemotherapy paves the way for editing these cells into non-sickle ones. These transformed cells are then reintroduced to the patients, aiming for a functional cure that can eliminate the complications associated with Sickle Cell Disease permanently.

This treatment marks the inaugural use of gene editing tools in the medical field, ushering in a new era of transformative medicine. CASGEVY modifies the DNA within a patient’s own stem cells, a groundbreaking feat that prevents the production of sickle cells, the culprits behind the early demise that haunts those afflicted by this disease.

As the news unfolds, the significance of this breakthrough is becoming a hot topic of discussion. Sickle Cell Disease, the most commonly inherited blood disorder, affects over 20 million people worldwide. More than 100,000 Americans, predominantly of Black or African ancestry, grapple with its impact. The complications, beyond the notorious pain crises, include infections, strokes, and heart attacks, reducing the average lifespan of those with the disease to around 52 years.

The sickle cell statistics paint a stark picture: a disproportionate number of African American individuals grappling with the complexities of this disease. While the reasons behind this genetic prevalence are multifaceted, the reality is crystal clear – a silent battle fought predominantly within the Black community.

“Sickle Cell Disease is a genetic anomaly affecting hemoglobin,” explains Scott.

In the intricate realm of SCD treatments, conventional approaches have long included hydroxyurea and blood transfusions. Blood transfusions and hydroxyurea have stood the test of time as primary therapeutic strategies for managing SCD. Hydroxyurea, a cornerstone since the 1990s, has proven effective in preventing vaso-occlusive crises, a common complication of SCD.

While these methods aim to manage pain and prevent complications, they are not always foolproof and come with their set of side effects.

As the curtain rises on this new medical marvel, doctors express their optimism, deeming it a possible transformative for the nearly 100,000 individuals bearing the weight of Sickle Cell Disease. A game-changer, an epochal shift in the landscape of science for this condition, CASGEVY holds the promise of opening doors to a new realm of possibilities for countless patients.

Amidst the celebration of this medical triumph, questions arise about its accessibility. The process, though lengthy and challenging, was deemed worthwhile by trial participants. Despite the hefty price tag, the comparative cost of lifelong hospital visits and emergency care weighed in favor of this revolutionary treatment.

“It’s a very promising new treatment, but the reality of its exorbitant 2.2 million-dollar cost is a real monetary challenge for the average working person,” shares Scott.

When asked what she does at home as an inexpensive natural aid she says:

“We typically do warm baths with epsom salt, green alcohol, melatonin and bubble bath to help soothe the body when our children with SCD have pain. After their bath we dress them in full pajamas for warmth and lay them on a heating pad. Doctors also recommend Tylenol or Motrin for pain as needed.”

Still, medication or hospitalization is sometimes necessary for patients when their pain is unmanageable.

“Electronics also help younger kids by distracting them from the pain,” says Scott. “It’s hard to watch your kids suffer with pain. Parents, this truly helps!”

In sharing insights, doctors and parents alike express the hope that third-party insurance companies will participate, making groundbreaking interventions more attainable. Despite the complexity and expense, the belief echoes the potential for improved quality and extension of life making it a worthwhile endeavor.

The approval of the CASGEVY treatment not only signifies a cure for Sickle Cell Disease but also marks a historic milestone in the evolution of medical science, offering a lifeline to those who have endured the relentless pain and complications of this debilitating disorder. The dawn of a new era beckons, bringing with it a renewed sense of hope for a healthier future.

Within our world, individuals navigating life with Sickle Cell Disease bravely confront challenges that often remain unseen. These silent warriors don’t wear capes; instead, they bear the invisible weight of pain, fatigue, and the constant vigilance required to manage their condition. Their battles are fought within, against the backdrop of a sometimes oblivious world.

As these new medical discussions unfold, once silent warriors, now have prominent stories of success towards the relentless pursuit of a better future. It’s a narrative that beckons society to listen, understand, and stand in solidarity with those who navigate life with SCD.

You can contact The SCOTT Center on Facebook and by email at LScott@ScottCenterOH.org