Understanding Sickle Cell Disease

by https://www.cdc.gov/sickle-cell/about/index.html |  September 1, 2025

What Is Sickle Cell Disease? 

Sickle cell disease is an inherited blood disorder, passed down through genes from one’s birth parents.iv

With sickle cell disease, the body cannot make healthy hemoglobin, a vital protein in red blood cells that delivers oxygen throughout the body.i While healthy red blood cells are round and move through small blood vessels to deliver oxygen, red blood cells for those with sickle cell disease are damaged and become hard, sticky, and look like a C-shape, or a “sickle.” iv, vThese sickled red blood cells die early and can get stuck, clogging blood flow in the blood vessels.iv, vi

Individuals with sickle cell disease often experience periodic episodes of extreme pain, known as pain crises, due to this blocked blood flow.v Along with extreme pain, this can lead to other lifelong issues like infection, stroke, and even organ failure,vi sometimes leading to an early death.vii

Sickle cell affects an estimated 100,000 people in the U.S. and is most common among people of African, Hispanic, Middle Eastern, and South East Asian descent, who oftentimes face inequities when seeking care.viii

What Types of Challenges Do Patients with Sickle Cell Disease Face?

Often, people with sickle cell disease have significant health problems that may result in unpredictable pain episodes and frequent healthcare visits, and many face health-related stigma and racial bias when seeking care.ix For example, patients with sickle cell often wait 25% longer than other emergency room patients before receiving care,x and Black patients are 22% less likely to receive pain medication for any condition compared to white patients.xi

They can even be mislabeled as “drug seekers” because the symptoms of the disease are largely invisible to the naked eye.xii Sometimes these sudden, excruciating pain episodes can last up to 11 days on average.xiii However, some doctors and nurses do not believe the severity of their pain.xiv 

Additionally, many people with sickle cell do not have access to the specialized care they need, despite the disease’s devastating impacts. Without access to specialists, a symptom-focused approach to care can lead healthcare providers, who typically are not specialists, to overlook the root cause of the disease.viii

According to Dr. Kim Smith-Whitley, Medical Affairs Lead for Sickle Cell Disease at Pfizer, healthcare teams with expertise in providing sickle cell-related care are often hard to find because they are uncommon. Because of this, support systems for people with sickle cell are very important. “Patients, like Makenzie, and caregivers must become advocates to find the right medical team to work with them to maximize their health and partner with them to find the best treatment approach,” says Dr. Smith-Whitley.

But advocacy doesn’t stop at finding the right medical team. “Challenges like transportation to medical appointments, limited access to mental healthcare, and difficulty navigating the healthcare system can make an already isolating experience even harder,” she continues. These barriers can prevent patients from getting the care they need, especially when living with a condition that often goes unseen. Dr. Smith-Whitley encourages patients and caregivers to seek out community-based organizations and resources that can help ease these burdens.

Closing the care gap for people living with sickle cell disease takes more than good intentions; it takes partnership, persistence, and a willingness to reimagine what support can look like. That’s where Pfizer is leaning in. Through its Patient Engagement team, Pfizer is helping support the fight against sickle cell disease, working hand-in-hand with patients, caregivers, and advocates to help break down barriers to care.

Whether it’s supporting non-profit organizations to help ease the burden of travel to healthcare appointments or scholarship programs to help empower eligible individuals with sickle cell to pursue their academic and vocational goals, Pfizer’s goal is simple: meeting individuals with sickle cell where they are and supporting the fight against sickle cell disease.

Why Is Proactive Care for Sickle Cell Important?

For far too long, innovation in this space has lagged—particularly for more proactive care and education to help manage symptoms and increase longevity.v Dr. Smith-Whitley believes that taking a more proactive approach to care provides the opportunity for patients and caregivers to focus on decreasing the likelihood of complications such as the sudden onset of unpredictable pain and certain bacterial infections.viThis includes partnering with your healthcare team to explore options to decrease sickle cell-related complications.

“Sickle cell care needs to go beyond just managing pain crises as they happen,” says Dr. Smith-Whitley. “Effective, proactive care and education could help patients reclaim control and allow them to enjoy more of life’s precious moments.”

When living with sickle cell disease, it is crucial to find strength in the community, consider a proactive approach to care, and stay informed about the latest advancements. Makenzie has learned this through lived experience. Diagnosed with sickle cell at birth, she grew up surrounded by the support of her family and a dedicated healthcare team. Her parents encouraged her to pursue all of her passions—cheering, singing, dancing, even softball and volleyball. Makenzie never let the disease determine her limits. Over time, she came to understand not only how to manage her condition but how to speak up for herself and take control of her health.

After transitioning out of pediatric care, Makenzie found herself stepping into a new kind of independence—going to appointments by herself without her parents or long-time healthcare team by her side. It wasn’t easy, but the process taught her the importance of finding a care team that listens, builds trust, and takes her condition seriously. Most of all, this shift pushed her to advocate for herself and take a more proactive role in her long-term health.

Makenzie’s journey with sickle cell didn’t just shape her. From a young age, she was fascinated by the world of healthcare, often pretending to be a nurse with a toy stethoscope in one hand and a wide range of questions for doctors at her appointments. But it was living with sickle cell day after day, dealing with uncertainty, and learning how to manage her condition that turned her childhood curiosity into her inspiration for pursuing a career choice. Now, Makenzie is studying to become a nurse, inspired by her journey and hoping to one day support others living with sickle cell the way her care team supported her.

“Be your own advocate” is a phrase that’s become Makenzie’s guiding principle. For her, comprehensive care isn’t just about managing pain; Makenzie is proof that sickle cell disease may shape someone’s path—but it doesn’t have to define it. 

And through cross-industry collaboration, the hope is that other people living with sickle cell disease can have a similar reality. “Our work isn’t finished,” says Dr. Smith-Whitley. “Through continued research, resources, and support programs for people living with sickle cell, Pfizer’s commitment to the sickle cell community goes beyond medicine. We strive to meet people where they are—fighting to ensure they feel seen, heard, and empowered through every step of their journey.”

Learn more about Pfizer’s continued commitment to sickle cell and access additional resources at pfizersicklecellcommitment.com.

PP-LTV-USA-3391 November 2025