Why the global sickle cell disease community needs more research

I wasn’t supposed to be writing my next column yet. In fact, I specifically requested that this piece be published on June 19, World Sickle Cell Day. For me, the day is more than an awareness campaign. It is a time to celebrate the resilience, strength, and courage of millions of people living with sickle cell disease (SCD) worldwide.

Over the years, I’ve observed sickle cell disease care in both Nigeria and the United States. My global patient community and my work as a physician have given me access to hematologists, healthcare professionals, and patients in both countries.

I often compare SCD care in Nigeria and the United States. Both healthcare systems have strengths and shortcomings, as well as important opportunities for improvement. One major difference is how sickle cell disease is viewed.

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In Nigeria, SCD is not considered a rare disease. Nigeria carries one of the highest sickle cell disease burdens in the world. As a result, almost every physician encounters patients with SCD throughout their career. Most physicians are expected to understand the basics of sickle cell disease management.

In the U.S., however, SCD is often treated as a highly specialized condition. Many physicians may go years without caring for a patient with the disease. As a result, patients often search for hematologists or dedicated sickle cell disease specialists when they need care. I frequently see posts from patients looking for an SCD specialist in their city.

Ironically, this difference creates both advantages and challenges. In Nigeria, basic knowledge of sickle cell disease is widespread among healthcare professionals. Most physicians understand how to manage an acute pain crisis. In the U.S., specialized SCD expertise is more needed, as only a few physicians are SCD specialists.

Pain remains one of the most difficult aspects of sickle cell disease to manage, especially chronic pain. No healthcare system has perfected it. However, I have observed that pain management in the U.S. often focuses on achieving the primary goal: reducing suffering and helping patients recover as quickly as possible.

In Nigeria, pain management can sometimes become overly focused on following established guidelines without improving the patient’s pain. Guidelines are important, but a guideline that does not reduce patient suffering may need to be updated to improve patients outcome.

Access to specialized care teams

The differences become even more noticeable when managing complications. Patients in the U.S. generally have access to specialized care teams, newer therapies, and more treatment options. These include blood transfusions, gene therapies, Endari (L-glutamine), Adakveo (crizanlizumab-tmca), and other advanced interventions. In Nigeria, many of these therapies remain unavailable due to accessibility and financial barriers. Greater access to specialized expertise and more treatment options leads to better management of complex complications and improved quality of life.

A major challenge in Nigerian sickle cell disease care is the assumption that the disease is already well understood because physicians encounter it frequently. Yet SCD has evolved significantly over the past few decades. Medical advancements have helped patients live longer than ever before. Longer survival has also brought a growing list of adult complications that are not properly researched and documented.

There is an urgent need for more dedicated sickle cell disease specialists, especially in Nigeria.

A common challenge

This issue became deeply personal to me when I became curious about adult SCD complications that patients frequently discussed in the community many years ago. I reached out to several hematologists at home and abroad. Many could not provide clear answers. They seemed just as puzzled as I was. Eventually, I turned to scientific journals and research publications to find the answers I needed.

That experience reinforced my belief that we must bridge the gap between general hematology and dedicated SCD subspecialization.

General hematology training provides an important foundation. However, sickle cell disease is a multisystemic disorder. It has become far too complex to remain just another chapter in a hematology textbook. We need physicians whose primary focus is understanding SCD, studying emerging complications, conducting research, and advancing patient care.

To improve care for the global sickle cell community, both healthcare systems must address important gaps. In the United States and other Western countries, healthcare leaders should strengthen basic SCD knowledge among frontline physicians. Patients should not face a knowledge gap during an emergency or an acute sickle cell crisis.

Ultimately, both regions share a common challenge: the need for more sickle cell disease research. Many adult SCD complications remain not adequately researched, underreported, and poorly understood. SCD needs more research.

As we mark World Sickle Cell Day, I hope we continue pushing for more research, greater specialized expertise, and truly patient-centered care. Medical advances have helped people with sickle cell disease live longer lives. Now, research and clinical expertise must keep pace with those longer lives.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.