Sickle Cell Awareness: Challenges & Exciting Developments
According to the CDC, in the U.S. 90% of people with sickle cell disease are Black or African American, and between 3%-9% are Hispanic or Latino. Per the National Heart, Lung and Blood Institute, 1 in 365 Black babies are born with sickle cell disease.
Recently we sat down with Regina Hartfield, President & CEO of Sickle Cell Disease Association of America, to talk about challenges facing the sickle cell community and the promise of new treatments.
But first, a brief primer on sickle cell disease.
What is sickle cell disease?
Sickle cell disease (SCD) is a hereditary blood disorder that affects hemoglobin, the primary protein that carries oxygen through the body via red blood cells. Normal red blood cells are round and pliable, allowing them to move easily through the vascular system. In people with SCD a gene mutation affects the hemoglobin, and their red blood cells become hard and misshapen in the form of a crescent or sickle.
These abnormal red blood cells don’t bend or move easily and can become stuck in smaller blood vessels, blocking blood flow to the rest of the body. This results in the hallmark symptom of SCD: a sickle cell pain crisis.
A sickle cell pain crisis can begin suddenly and affect any area of the body, but most commonly the chest, back, legs, or arms. The pain can range from moderate to excruciating, and last for hours, days or weeks. These crises are the #1 reason people with SCD seek emergency medical treatment.
If not treated quickly, a pain crisis can be damaging and even life-threatening. Complications of sickle cell and these pain crises are blood clots, stroke, anemia, acute chest syndrome, chronic pain, even organ damage or failure.
What many people don’t know about sickle cell disease is that the estimated life expectancy for people with SCD is more than 20 years shorter than the U.S. average.
Compared to other disorders that affect the same number of people, SCD has been historically under researched and underfunded. Because most people with sickle cell are Black, the community regularly faces inherent discrimination and bias, affecting their access to care.
Bottom line: sickle cell is a relentless disease that impacts daily life – not just physical health, but every facet including relationships, education, employment, and mental health.
Leading the charge for advocacy
Founded in 1972, Sickle Cell Disease Association of America (SCDAA) is the nation’s leading voice for the sickle cell community. SCDAA’s mission is to advocate for everyone affected by sickle cell, empower community-based organizations to support families living with sickle cell, and influence research, policy, and legislation that advance the well-being of the community.
At the forefront of this mission is SCDAA’s President and CEO, Regina Hartfield. With a heart full of passion, Regina has dedicated herself to advocating for better healthcare and support for those affected by SCD.
MedicAlert and SCDAA recently partnered to develop a program to tackle the problem of emergency care for people with SCD. Read more about that in the interview. .
President & CEO, SCDAA
Q&A: MedicAlert Interviews Regina Hartfield
To better understand what's happening in the sickle cell community, we sat down with Regina to hear her story and insights. Here are some excerpts from our conversation.
Q: What drew you personally to the cause of sickle cell advocacy?
Regina Hartfield: Simply, my mom. Many years ago, she was a nurse in the NICU, where she often cared for newborns with severe health challenges. She made us all aware of sickle cell disease and the newborns who were suffering. I remember her speaking about the short life expectancy of the young people she cared for due to sickle cell disease.
I distinctly remember one day when I was 16 years old. We were out shopping, and at one store a young man, not much older than me, kept calling my mom’s name. When she didn’t hear him, he literally jumped over the counter and gave her a big hug. He was one of her sickle cell patients. It was truly a wonderful moment. My mom was beloved not just as a nurse, but as a person, and I wasn’t surprised by the interaction. When we left the shop, my mom said, “Wow, I’m so happy to see him. We didn’t think he’d ever live to be this age.”
That moment was eye-opening. I was young and healthy, but this young man had endured so many challenges. It stuck with me. When I had the chance to join the SCDAA board, I was really excited to learn more about the disease and help the organization serve the sickle cell community.
Q: What are the biggest challenges facing SCDAA and the broader sickle cell community right now?
Regina Hartfield: To me, the three biggest challenges are: keeping the issues alive, along with education and access to healthcare.
These challenges aren’t new. The sickle cell community has endured decades of disparities and inequities, especially regarding the mistreatment they receive in emergency departments during a pain crisis. There is a widespread misconception that these individuals are drug seekers, which leads to their suffering being dismissed. Healthcare providers see patients in pain but don’t believe them. Some are even escorted out by police while they are sick and in need of care.
At SCDAA, we’re committed to keeping these discussions alive. We want to ensure that education is available; not only to those living with the condition but also to their caregivers and healthcare providers. It’s crucial that the healthcare system provides compassionate care and access to treatment. Emergency department physicians and healthcare providers are often hampered by policies that restrict their ability to administer opioid treatments.
Urgent care centers aren’t designed to handle patients with sickle cell disease. It’s a rare disease, but not a rarity – it affects enough people that it shouldn’t be unfamiliar. Unfortunately, there aren’t enough healthcare providers trained to manage sickle cell disease. Some patients have to travel two or three hours just to see a provider. In some areas, a healthcare provider might see only one sickle cell patient in five years. When they see the next patient, will they be prepared? It is all very difficult and that is why we continue to advocate for this community.
“Medical and healthcare providers need to understand that sickle cell pain is real, the treatment plan is real, and if treatment is not administered correctly, people can die.”
Regina Hartfield
President and CEO
Sickle Cell Disease Association of America (SCDAA)
Q: There’s so much excitement around new treatments for SCD. What do these advancements mean for the people living with the disease?
Regina Hartfield: We’ve been very fortunate that the FDA approved two gene therapies. This is incredibly important, as it gives people with sickle cell disease another option for a potential cure. While these therapies may not be available to everyone right now, there’s hope they will become accessible to more individuals.
This is a historic time. For the first time, we have more than one curative treatment—bone marrow transplant and now gene therapy. Both treatments are physically demanding, but they represent incredible opportunities. Before these treatments were developed, the focus was on managing symptoms. Now, people living with sickle cell can ask, “What does this mean for me? Can gene therapy help me? Can it help my child?”
There are challenges, though. Gene therapy is currently not covered by insurance and comes with significant out-of-pocket costs. It’s not widely available, and the process is long and difficult. Beyond the physical commitment, families must consider factors like career, family planning, and reproductive preservation—expenses they may never have anticipated.
Still, gene therapy can change lives. Families that are used to rearranging their lives around unpredictable pain crises can finally feel free. After successful treatment, there’s no more worrying about the next crisis. They can live their lives without fear.
Q: You’ve been with SCDAA for almost 3 years now. Looking back, what moments or milestones stand out to you?
Regina Hartfield: I would say the biggest achievements of SCDAA over the last three years are the strength of the organization and the healthy relationships we’ve built with our members – the community-based organizations (CBOs) that provide education, services and support to people living with SCD and their families across the county.
When I joined SCDAA, the organization was in a transitional phase, and we had the opportunity to rebuild and define how we could best support our members. It was during COVID, when the entire organization was remote.
When we finally returned to the office, one of our members suggested we hold an open house for all the CBOs. It was a great idea! I still remember that wintry day in late January 2023. It’s one of my all-time favorite moments. I opened the doors to the office, and members from across the country came pouring in. We immediately bonded over the challenges and opportunities ahead of us. We laughed, cried, hugged, and supported one another. It was a very humbling experience. And it showed that we are all in this fight together.
We work hard every day for our members, so they have the resources they need to improve life for people facing SCD. We now have 57 community-based nonprofit organizations across 30 states working directly with families and individuals living with sickle cell disease.
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Q: MedicAlert is proud to partner with SCDAA to improve emergency care during a sickle cell crisis. What does the program mean for SCDAA and the SCD community?
Regina Hartfield: When MedicAlert approached us about this program with the Smart Medical ID Card—a program that makes it easier for someone seeking treatment in the emergency department to have their medical records easily accessible—I was awestruck.
Mistreatment, discrimination, and disparities are rampant in healthcare for those experiencing a sickle cell crisis. Whether it’s implicit or explicit, bias is bias. People are denied care and help. Our community has learned to cope with a level of pain that is unimaginable. It’s a level of disrespect and discrimination that no one should have to experience. Imagine being in so much pain that no one believes you, and then they threaten to call the police. These are law-abiding citizens, just seeking treatment.
The credibility of the MedicAlert name will help so many people. To be able to show a medical ID card with a QR code that can be scanned to access your health information—your hematologist, pain plan, and emergency contacts—is incredible. It gives individuals the confidence to walk into an emergency room and know they’ll be taken seriously and treated with respect.
Q: What are some resources that SCDDA offers for people living with sickle cell?
Regina Hartfield: Oh, there’s so much. We have a variety of resources, including a clinical trial finder and a mental health toolkit. For those in the healthcare community, we provide a Community Healthcare Worker training program to ensure healthcare providers are better equipped to care for individuals with sickle cell disease.
It’s really important for people with SCD and their caregivers to find the CBO that provides additional resources right in their local community. Local organizations provide services like support groups, counseling, education, advocacy, events, and in some cases, direct support for things like transportation to medical appointments.
MedicAlert Foundation extends our immense appreciation to Regina Hartfield for sharing her compassion, dedication and expertise in the sickle cell disease community. To learn more about SCDAA, visit their website.
For more about the joint MedicAlert and SCDAA pilot to improve emergency care in a sickle cell pain crisis, read about it and apply here.
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