The Sickle Cell Struggle: Advocacy, Unity, and the Power of Community Collaboration
More Programs and Publications Featuring Dr. Titilope Fasipe
In this program:
Sickle cell patients can be anywhere, but are there effective community-based strategies to help with psychosocial challenges? Expert Dr. Titilope Fasipe from Texas Children’s and sickle cell warrior Jemela Williams share their perspectives of successes they’ve seen in the sickle cell advocacy community.
Transcript
Interviewer:
Dr. Fasipe, as chair of the Houston Sickle Cell Collaborative, what community-based strategies have you found to be most effective in addressing the clinical and psychosocial challenges of sickle cell disease at the local level?
Dr. Titilope Fasipe:
When I started my residency in 2010, I had moved to Cincinnati to look up, sickle cell organizations in Cincinnati. And it was like crickets. I finally found one. And that was the first community-based organization I had met. And I was struck by how many struggles they faced, struck, saddened, and disappointed. They told me how they don't get funding resources. And they were part of their urban league. So they had some funding through that, but it was hard for them to figure out how to shine a light on sickle cell disease when the community didn't seem to care. And that was the first of many community-based organizations that I would meet that help sickle cell disease. And they would share similar stories. And yet they were still out there advocating and doing their best, even though they had just a little bit of funding and resources.
And those resources included the personnel. These people were like sacrificing their lives to try to figure out how to make things for sickle cell better. So it led me on this journey. Slide 2 When I then moved to Houston, three years later, I was like, Houston's a diverse city. Maybe it was Cincinnati's fault. Let me Google sickle cell organization, Houston crickets in 2013, 2014, slowly, there were more groups, but I started seeing that this is another example of the generational wealth issue when it comes to Black America and things that impact Black Americans. So I've been saying this phrase sickle cell disease is the medical representation of the Black experience in America. And so it wasn't surprising to me that a sickle cell organization would be struggling because it represents the same fragment of life, the same components that impact the greater struggle. And it's not fair. And so then it's like, okay, so what do we do? How do we feel seen? How do we feel like things can move forward?
I'm a realist, but I do have a lot of optimism, and I do believe in working together in unity. So I had heard this type of story and see if this sounds familiar. Well, we try to partner with the other group, but we didn't get along or this thing happened, and they betrayed me or I, this happened and we had different goals and she wanted to be the boss of me. He wanted to do this. I heard that over and over again. So not only are we a disparate community base, we had fragments and fractures within ourselves because not because we're of the color of our skin. Oh, Black folk, they can't get to go. No, not because of that. It goes back to that resource problem. When you have a scarcity phenomenon, you're going to see the survivalist mode kick in. And sickle cell has a unique problem. Most people who start a community-based organization, it means something to them.
Their loved one passed away. They have a child, they have a loved one. This is, they're not just doing it for fun. So it's incredibly personal. And so what you're seeing that looks territorial, or why does that person not want to partner with me? A lot of it is this pride and sacredness, sacred spaceness of why they went into the community-based world to begin with. I start with that baggage, because I want to explain why the strategies, it was difficult to figure out. But trying to figure out a way to find common ground where people did not feel like one person was trying to lord it over another. And we all had equal footing. We were fortunate that in 2016, the Houston health department convened a meeting to hear out all the groups, hear them out. So it didn't matter whether your group had one person in it or 20,000 people, and which none of them had 20,000 people, but the biggest group and the smallest groups, everybody was at the same table and was able to voice their concerns. And that eventually led to the creation of the sickle cell collaborative. And it's not all bed of roses resources.
Thankfully, people love unity. So we were able to get funding just because we were collaborative, which was great. And it didn't belong to one group. We had it housed specially for us with the Houston, with the city. And so it was protected in that way. And there was more trust in the system. And so those are certain strategies. One finds the external entity that also has a common goal, but is not so entrenched in the sickle cell space that they look like competition, and they can kind of help with the convening component. And that helps with the trust, because people have their stories and those stories are very personal and real. And so that's kind of general experience and whether or not it is unrealistic. I do feel that the united we stand approach is the best approach. And I don't think you should have a situation where you feel like you need to exclude somebody. We may not all want to eat lunch together or go to parties together, but we do all care about sickle cell. We care about sickle cell. And if there's a way we can have the same vision for that, let's do it. So the strategies we found being effective was calling out the elephants and addressing them. We know we don't get along, call it out, call it out.
We brought in a type of mediator person to hear each of the groups out why they feel the way they do and try to figure out, okay, what things do we agree we can work together on? And so that again, led through a healing process. I'm not saying everybody's best friends, but when we come together, we clearly have one goal. Ours we decided was going to be advocacy. You might be great at that. You might be great at that, but together we are all great at advocacy, and what does that look like? So we're planning our third advocacy summit. Now we've had them every two years. And so for us calling out the elephants and addressing the fact that there are the fractures in the community have helped. And then looking at that common goal, what can we all agree upon that we can all pitch in and work together? I, you'll hear people say things like, well, all the groups need to just become together and be one group. All of that.
I decided it's best not to be paternalistic and tell people what to do because again, it's not your child that died. It's not your loved one that was impacted. So let people be themselves if they want to come together, great. And then if there's a unified goal that does not, again, force them into a version of themselves that doesn't seem authentic, I think they'll get behind that. But that's kind of the journey that we've had with the Houston Sickle Cell Collaborative.
Interviewer:
I love that bringing in a mediator, calling out the elephant in the room. Yes. I really agree with what you said when like you say, yes, probably heard the story before. I will. I tried to partner with them, but we didn't get along and they tried to take over. People are just passionate about why they're advocating for sickle cell why they started the organization. And it's not one person is trying to lord anything over another. They just, they're really dedicated. They're really passionate. It's a sense of pride, like you said, and just a sense of really wanting to do right by this organization, exactly, and honor what had the way it started, why it started who it was started in honor of.
Dr. Titilope Fasipe:
Exactly. And I encourage groups to figure out how to be the best version of their organization that they can be. And because again, they have the passion, but they don't always have the resources and resources. It's not just money. Sometimes it's just learning the nuances of how to run a nonprofit, nonprofit organizations. That's a big, tall order. So again, I commend every group out there who does the work, the hard work of figuring out how to personalize and be the hands and feet of what it means to get sickle cell care especially in a place like our country that doesn't have good healthcare system for sickle cell. So the community-based organizations fill a huge gap.
Interviewer:
Yeah, they do. Thank you, Dr. Fasipe.
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