Lack of Awareness and Knowledge About SCD

EP: 1.Patient and Caregiver Experience

EP: 2.Overview and Burden of Sickle Cell Disease

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EP: 3.Lack of Awareness and Knowledge About SCD

EP: 4.Impact of Sickle Cell Disease on Everyday Life

EP: 5.A Young Mother’s Journey With Sickle Cell Disease

EP: 6.Pain Management With Sickle Cell Disease

EP: 7.Mental Health and Sickle Cell Disease

EP: 8.The Mental Health Journey With Sickle Cell Disease

EP: 9.Building Relationships in the SCD Community

EP: 10.Evolution of Therapies in Sickle Cell Disease

EP: 11.Patient Factors Associated With the Choice of SCD Therapy

EP: 12.Patient Experience With Treatments for SCD 

EP: 13.Advocacy as Part of Sickle Cell Disease Management

EP: 14.Patient Advocacy and Education in SCD

EP: 15.Educating Patients With SCD About the Associated Pain and Anemia

EP: 16.Advice for Patients With SCD and Their Caregivers

EP: 17.Physician Advice for Patients With SCD

Ifeyinwa Osunkwo, MD, MPH: I’m going to segue to Cassandra. Cassandra, as somebody who has been diagnosed with sickle cell disease, in your domain of work, how do you address the lack of understanding about sickle cell disease symptoms and treatments among the public? People tend to think, “You look fine. You don’t look like anything is wrong with you. You’re not bald. You’re not getting chemotherapy for cancer.” How do you address this lack of understanding and awareness?

Cassandra Trimnell: Dr Ify, you just said it right there. It’s essentially an invisible disease or disorder. As I’m talking to you right now, you can’t tell whether I’m in pain or not. Pain is very hard, especially if you live with it for the duration of your life. I don’t like to say you get used to it, but you learn to manage having it. Essentially, if you go into the emergency department and you’re describing this type of pain, it’s this incredibly severe pain, and all you can really do is cry and react to it, but you can’t see that pain. That’s what makes things much more difficult in navigating sickle cell disease in health care and in life. That extends to health care providers and family members. Family members know only half the story. You don’t truly understand the pain or any of the complications unless you’re actually experiencing it. I’d like to reiterate that it’s an invisible disease. You can’t outwardly see sickle cell disease.

I’d also like to provide the historical context of sickle cell disease. It was discovered in 1910, over 100 years ago. We currently have 4 FDA-approved therapies available to us. As Dr [Wally] Smith put it, it was the first molecular disorder discovered, and other disorders have been discovered after the fact and have more therapies than us. So why are we so far behind? I just want to bring to light the racial component to sickle cell disease. Sickle cell disproportionately affects people of color, the Black community, and those of African descent. That’s another layer of invisibility, if you will. Just based on medicine and health care within the United States and globally, it really has set us back. We’re trying to play catch-up.

Within my line of work, we’re beating the drums about this. We are encouraging education and awareness. Those are the pillars of what our work is about. There are babies being born unknowingly with sickle cell disease, and people dying unnecessarily because of sickle cell disease. We want to bring it to light and make sure everybody has the full story. Because although it’s a rare disease in the United States, it’s a common global genetic disorder. It should have been addressed a long time ago. We’re playing catch-up, and it’s something that needs to be addressed. It needs to be a household name.

Ifeyinwa Osunkwo, MD, MPH: Thank you very much. This highlights the importance of beating the drums, as you say, and making sure people are aware of not just what’s happening right now but also the historical context, because it sheds light on why things are so bad right now. It also puts some pressure on the call to action of what to do going forward.

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Transcript Edited for Clarity