The Sickle Cell Disease Patient Journey - Episode 13

Advocacy as Part of Sickle Cell Disease Management

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A patient advocate for sickle cell disease explains how advocacy helps her to manage her disease and why she chooses to be an advocate and educate the sickle cell community.

Ifeyinwa Osunkwo, MD, MPH: We’re going to move to the section on patient advocacy for sickle cell disease. Because this is a chronic lifelong disease that affects people of African American and Hispanic descent—minorities—so a lot of social determinants that Cassandra mentioned, like stigma, racism, discrimination, come into play. Dr [Wally] Smith mentioned PTSD [post-traumatic stress disorder]. Sherry [Bailey], Jamaal [Bailey], and Cassandra alluded to the emotional toll. Cassandra, what motivated you to start Sickle Cell 101? How do you do your advocacy work? I’m sure you work…with other groups and boards. Share with us your journey to making advocacy an important part of your life calling.

Cassandra Trimnell: Thank you for that question. I started Sickle Cell 101 because I wanted to learn more about the disease I live with, and I felt others would want to. When families are diagnosed with sickle cell disease, it affects more than 1 person. I use the word families because sickle cell is a family disease. It’s not a 1-person disease. If I fall into a pain crisis, my husband and all the people around me have to take care of me. Whoever is around you needs to know about sickle cell. It affects them too.

I started Sickle Cell 101 to make sure people had that knowledge. When families are diagnosed with this genetic disorder, they’re given a brochure or pamphlet and left to their own devices to navigate and figure out this complex genetic disorder. Our aim is to fill that gap and make sure people are informed. We have an informed community. People know what resources are available and how to better manage the disorder. Our unofficial slogan is “Knowledge is power.” It really has been that for me. That’s why we do what we do, in terms of sitting on ad boards and everything.

I say I’m the luckiest person in the world. I have the best job in the world because I get to share my experience and have people better understand, listen, and potentially create change and better outcomes for people. I don’t take what I do for granted. I applaud companies that are soliciting feedback from people living with sickle cell disease because that wasn’t always the case. It used to be a health care provider research space. Now we get a seat at the table, and we should have always had a seat at the table.

Ifeyinwa Osunkwo, MD, MPH: You are the table. You don’t just need a seat. There’s no table without you.

Cassandra Trimnell: Exactly. This is affecting us, so to be able to provide feedback and voice concerns, prioritize research, and prioritize various things is great. Part of my work is that I’m a certified sickle cell educator by the [California] Department of Public Health. Every day I get to educate people about sickle cell disease. That’s amazing to me. That’s where I am.

Advocacy is part of my disease management. It’s a big component of disease management. I advocate for my health because I’m in what I like to call self-preservation mode. I wasn’t always there. I grew up thinking, “Let’s let the disease run its course,” because we had very few options available, as Dr Smith said. It was pain medications, blood transfusions, and staying hydrated. Hydroxyurea wasn’t introduced to me until later on. We did not have those options, so I was in the mindset of, “Let’s let the disease take its course and see how far this gets me.” Now I’m the opposite of that. I want to make sure I’m here for my daughter at the end of the day. Maybe it took me becoming a mother. I’m trying to make sure I’m in the healthiest body I can be. Therefore, I’m trying to give my body all the help it can get.

Self-preservation for me looks like having follow-up appointments, staying in communication with my health care provider, eating healthfully, and staying fit. Am I perfect? No, far from it. But I’m making sure that’s in the back of my mind, and I’m cognizant and trying to work toward that. I’m also on some of those FDA therapies. I actually started hydroxyurea in a weird way. I started hydroxyurea because I knew there was an upcoming therapy. I thought, “I need to preserve myself, so when the cure comes along, if I want to, I can hike up Mount Everest.” I have the body fit enough to do that, but I do have a hip replacement. I had avascular necrosis in my right hip and got my hip replaced. If the cure comes along, I will still always have to deal with that hip and the chronic pain associated with it.

I thought, “What else do I need to protect?” I need to protect my heart, brain, and all these other organs. That was 1 of the reasons I started hydroxyurea—not for the day-to-day benefits but to protect my organs so that I have a choice in the future. Also, should something come along that cures my sickle cell, I’m in the best body I can be in. That’s how I reason with that. Upkeep with my mental health and advocacy are what self-preservation looks like to me. Advocacy is really the cornerstone.

I wanted to provide my 2 cents on why people stop taking medication. To me, you equate medication with sickness. When you’re feeling better, you think, “I don’t need this anymore because I’m feeling better.” It’s like how pain works. You don’t take pain medication unless you’re in pain. When you’re out of pain, you stop taking it. That’s something that I’ve come to the realization of. I thought, “No, that’s not how all medication works. You have to keep working at it.” To make a long answer short, advocacy is 1 of the best ways to manage sickle cell disease.

Ifeyinwa Osunkwo, MD, MPH: Thank you very much for watching this HCPLive® Cure Connections®. If you enjoyed the program, please subscribe to our e-newsletter to receive upcoming programs and other great content right in your in-box.

Transcript Edited for Clarity