What Kind of Support Does the Sickle Cell Community Need?
In this program:
Sickle cell patients need more support, but what kind of support will have the most impact? Sickle cell advocates John Masembe and Jemela Williams share their perspectives for what can help individual patients and the broader sickle cell community.
Transcript
Jemela Williams:
So what kind of support is needed in the sickle cell community to thrive…patients, adults, families, caregivers?
John Masembe:
That's a good question, and I think what we're doing right now is really important. Teaching transition programs for kids to adult care, that's one thing, and also inspiring hope in young children, you're like, "Hey, you're going to grow into an adult, your life is not just going to be in and out of the hospital." because that's what I had thought in my mind growing up. So I'll speak to my own experience and the same thing for my sister, rest her soul and so did my other brother, rest his soul too. They didn't live to the point where they thought, most of the people in my community their life has been, as sad as it is, in and out of the hospital system because sickle cell kind of, it's hard to have dreams and ambitions when you're just all-around trauma your whole life.
However, instilling change early on and telling kids, "Hey, if you have a dream, this is where we can support you, I think that's really, really helpful because it takes away the focus on just, you're more than your illness, you're more than sickle cell disease. You're still a person with dreams, ambitions, impacting your community, and the world is going to be, you're still a blessing to this world especially if you're still alive and you have people that love you. So telling kids early on, hey, if you have a dream, go to college...try to finish high school, once you're done with your school, you don't even have to go to college, maybe you could go do a certificate program or something you're passionate about. It could be cooking, it could be, right now, a lot of kids are doing computer programming. Find some kind of inspiration, I think that will really help take away the focus. I'm not saying don't focus on your health, but also your life outside of sickle cell really matters, that's a key factor. And then another part of that too is funding. A lot of sickle cell therapies and communities don't have the funds to drive the programs that they want.
Jemela Williams:
Yes. Yes.
John Masembe:
We're just now getting to voxelotor (Oxbryta) after how many years sickle cell has been around?
Jemela Williams:
Yeah. Yes.
John Masembe:
For more than 50 something years. We are just getting to a point where Oxbryta, for those that don't know, is a therapy that helps sickle cell disease and the flow to reduce sickling and pain crisis. But that is a medication, but do you know how many therapies is just Oxbryta and maybe voxelotor, which is also maybe voxelotor and then the curative care for that is a bone marrow transplant. Those are the only probably three that I know, and then maybe pain management, that's another one. But do you know how many therapies, cancer, diabetes, heart disease?
Jemela Williams:
Cystic fibrosis, yes.
John Masembe:
Cystic fibrosis, all of that.
Jemela Williams:
Yes.
John Masembe:
They have all of this every year. Millions and millions are raised of dollars, billions raised, pharmaceuticals dedicating money to those therapies, but sickle cell doesn't. But...so a lot of that you have to put into context, I think it's because of, of course, race is one thing, our population is small, so it's not going to get as much attention as maybe cancer, because cancer has a lot of patients. However, it still doesn't discount the fact that we're still a blood illness, this is a blood illness and people die. I've lost family members, I'm sure you've lost a couple of people too, and it's really sad. I really wish, and I'm trying to be strong in this interview, because I really wish my brother and sister and some of the people I lost in my community had the ability or the chance to get the curative care that they deserved, but they didn't. So what HIT is doing right now having these conversations and I'm not sure what platform it's going to go to, it's creating more awareness, it's spreading the word. I'm not so sure, how do you guys do it on your end? How would you recommend to engage with sickle cell providers?
Jemela Williams:
Well, one thing is we, well, I'm going to start off by saying I'm very sorry about your family members and probably other friends that you've lost as we all have to sickle cell disease. One thing we have is a support group. We used to have the support group in-person, of course, but then COVID hit. So we started doing it online and we're still doing it online. So we've met so many people because of the support group. So many people were feeling isolated due to COVID and things like that. So...
John Masembe:
Great.
Jemela Williams:
And I always stress, support is one of the main, main things that you need to have as a sickle cell patient, families, caregivers to help you get through this disease.
John Masembe:
Great.
Jemela Williams:
So we have a support group. Our board meetings, we meet and we invite others to the board meetings, if they want to know about what's happening in the community, things like that. We have doctors come and talk about new things they're doing. We just had a doctor come and talk about an app for sickle cell, things like that. And we have, just like you mentioned, a walk. We have our walk this weekend, it's our 13th annual Strolling for Sickle Cell Fun Walk, and so we do have doctors come to that, and patients. One thing I feel we do have trouble with is, supporting the younger patients. I feel like we...unless they call in for assistance, a referral or something like that, we don't get a lot of young patients at our support group. It's mainly 30 and up. So we've been trying to think of ways to connect to them, especially since our transition program is not as full as we would like it to be. So that is one thing we're trying to work on to do better, but we have many community events for people to come out, meet our board, talk about sickle cell. And our president, Kevin Wake, he is very, very involved in the sickle cell community.
He sits on the PFAC, at the hospital, and just very in touch with the community. He has sickle cell beta thalassemia, and he lost his two brothers to sickle cell as well. Yeah. So we try to get out there, talk to people, we have educational events to reach the community and things like that. I wish our community was a little bit more involved, I think it could be a lot better. And not just...not meaning the sickle cell community, but the sickle cell, the Black community at large in our city and so we're trying to work on ways to do that. But yes, support is extremely important when you have sickle cell.
John Masembe:
Right. I think that's also really important too, because it's a...I echo the struggle a little bit in trying to get young people to be involved. Usually the...
30-something-year-olds are the much more actively involved in these issues.
Jemela Williams:
True.
John Masembe:
And I look back, I'm like, "Okay, what did the 20-year-old, 17-year-old me wanted to do? Did I want to sit down and talk about my illness every time? No. I wanted to play some games. [laughter]
Jemela Williams:
Yes. Very true.
John Masembe:
I wanted...right now we got TikTok, so kids are either on their PlayStations or…but the only thing that we try to do though sometimes to get kids involved is, we offer incentives, we do game night where we're like, "Okay, cool, we about do a game night on this day, so if you want to sign up, come up, well, we have a sickle of house over here and patients and community members just kind of go there and just kind of chill. So we can have game night, it creates a space where we could just play games, dance. I'll get to talk trash to my...to the little kids when I'm playing sticks with them, Call of Duty or something like that. But that also takes away the idea like, "Oh man, I'm already sick, I'm already sick." and it just kind of gives you a space to live, but also interact with the adults. It's not always perfect, but at least it's some form of engagement where we could pull in the younger generation to have them kind of hang out with us a little bit more. So that's pretty good. Maybe you could try that.
Jemela Williams:
I love that. Yes, that's good advice. And I love that you guys have a sickle cell house where everybody can come gather, that's really beautiful.
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