September 12, 2024
This article originally appeared in AABB News, a benefit of AABB membership. Join AABB today to read the rest of this month’s issue.
In honor of Sickle Cell Awareness Month, AABB News is pleased to spotlight Titilope Fasipe, MD, PhD, a pediatric hematologist-oncologist and co-director of the Sickle Cell & Thalassemia Program at Texas Children’s Cancer & Hematology Center in Houston. Fasipe was born in Nigeria and diagnosed with sickle cell disease (SCD) as an infant. Today, the Houston physician is involved in various SCD-focused community eff orts, and her research explores clinical challenges of the disease. Fasipe chatted with AABB News about her journey as a sickle cell warrior and discussed the future of transformative therapies and her passion for helping young patients and their families navigate the hardships of the disease.
My earliest memories have always included SCD. Nigeria didn’t have newborn screening programs for SCD back in the 1980s, so my parents didn't know I had SCD until I had my first pain crisis as an infant, and they couldn't figure out what was wrong with me.
I am the oldest of four children and the only one of my siblings with SCD. At age three, my family moved to the United States. I felt a little isolated during those early childhood years because I knew I was diff erent. When I was 11, we moved back to Nigeria. I was taken to the sickle cell clinic, and there were tons of other kids there. I no longer experienced isolation. I even met my cousin, Femi, who also had SCD. For the short time I knew her, she really inspired me and was a kindred spirit. She was two years older and seemed healthy, so it was tragic when she died at age 17. Her death matched what I read in one of my mom's nursing textbooks— the estimated life expectancy for SCD was 18 years. I thought it was destiny and that could happen to me too.
When I moved back to the U.S. as a young adult, I met other sickle cell warriors in college. I kept hearing about young people dying with SCD, and I wanted to change that. I began to realize that no matter where you exist in this world, you may face some disparity and stigma if you have SCD.
I first witnessed the mistreatment of somebody with SCD in medical school—an unhoused young woman with three children who was suffering from a pain crisis. Doctors didn't seem to believe her. I saw that somehow in America, SCD was sometimes a disease that providers don’t want to treat. This was solidified when an oncologist—who didn’t know about my diagnosis—used the word “drug seeker” and warned me about caring for this patient population. I couldn't understand why a good doctor would describe patients that way. But that moment stuck with me, and I no longer felt comfortable telling people I had SCD because of the negative association.
Since then, part of my mission has been to change the outlook of SCD. I want people to see the person. I don't want people to question why a person with SCD is in their emergency department or needs hospitalization. Ultimately, my career path was inspired by beautiful sickle cell warriors I met throughout my life's journey, along with seeing SCD treated differently from other diseases in our health care system.
When I became a physician advocate in 2018, I learned the power of telling one’s story. I started learning more from the SCD community and community-based organizations. I initially felt uncomfortable sharing, but I no longer carry that shame from medical school because I've been inspired by people who share their story even against all odds.
I don't usually walk into a room and tell parents or patients I have SCD. Some of them know because they'll Google me, or I met them in the community. However, I do share my story with patients having a tough time, which tend to be teenagers who may have heard or seen a story about mortality rates and assume they’re going to die young. Or they're struggling with other aspects of the disease and isolation. My story also helps parents because they are worried about their kid’s future. Seeing someone like me and sharing other warriors’ stories encourages them and gives them hope. You won't know it's possible until you see someone else doing it.
On that note, I’d like to say I’m grateful that AABB is spotlighting SCD. Efforts, like this one, remove the invisibility of the disease and bring awareness to other communities.
I met the first doctor I considered a SCD expert during my residency program. He knew so much about the disease but also about quality of life, and he recommended I take hydroxyurea. That was the first time I had that kind of discussion. And that's the type of doctor I want for everybody with SCD.
As I tell my pediatric population, your SCD may look or impact your life differently with every stage of life. When you have a job, people have expectations of you, so you must know when to carry out those duties and when to draw the line and take a break. Like most people, I’ve struggled with that line sometimes. Balance is key. I know if I overwork myself, I'll probably throw myself into a pain crisis, so that means I sometimes have to say “no” or adjust my schedule or responsibilities.
I value my time with my patients. I learn a lot from children and their families. Their resilience is quite impressive, and their stories and struggles are both similar and different from mine. Seeing those various flavors of sickle cell life and being in a position where people welcome you to help them through their journey is quite humbling and rewarding.
I’m also energized by advocating for better care. I have been able to serve on national and international committees for SCD. Through those experiences, I feel I am helping “all” children with SCD. I'm very proud of the children I care for one-on-one, and I recognize that they are drops in the bigger bucket. The burden of SCD is so great, which means that we need to make sure initiatives are happening at local, regional, national and international levels. We need to rewrite how society views SCD to affect changes in health care systems and improve outcomes worldwide.
We have two gene therapies approved. That's through the work of many clinical trials around the country and the brave men and women who participated in those trials. It's quite remarkable. We need to continue to follow the science and thank those brave enough to participate in the clinical trials and monitor how they fare.
At its core right now, gene therapy is still a transplant for SCD—a potentially transformative therapy and at best a functional cure. The goal of gene therapy is to allow people to be their own donors and hopefully have less side effects than donor-based transplants. It also opens more possibilities because most people don’t have access to a donor that’s required with traditional transplant therapy.
I am encouraged and hopeful, but also see different sides to these conversations on gene therapy. There’s an ethical dilemma to consider, and we're probably going to struggle with it for some time. One of the most frustrating challenges is the lack of equitable access to quality, comprehensive care for many people with SCD in this country. If a person hasn’t been receiving basic SCD care, how are they expected to get a therapy that requires significant care coordination? It presents an irony because although we have treatments that may save lives, there are several barriers that limit access to those treatments, including cost, the limited number of physicians with expertise in SCD and patients that don’t meet the criteria because of organ damage caused by the disease.
As gene therapy technology continues to advance, and our society continues to improve how we care for individuals with SCD, I see a brighter future. A future where the decision to receive gene therapies is not limited by access, but instead anyone who desires it would be able to receive it.
I am very blessed to have a career that allows me to make a difference. Furthermore, I’m happy that I'm witnessing this era. I tell the parents of my young patients they are living our new future because we have emerging therapies and treatments to offer that can make their life different from somebody born in the 1980s or earlier decades. The younger patients with SCD I see today will have more options 10 years from now.
Individuals have been advocating for SCD since the 1970s, and sometimes it feels as if one step forward is followed by two steps backward. But with every wave of advocacy, we’ve embraced the lessons of the past and have gleaned effective strategies for the future. It has been wonderful to be a part of the current collective wave and to continue building on the legacy of hope.
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