Empowering Adolescents and Young Adults in the Transition From Pediatric to Adult Sickle Cell Care
More Programs and Publications Featuring Dr. Titilope Fasipe
In this program:
What are barriers and solutions for transitioning sickle cell youth from pediatric to adult care? Expert Dr. Titilope Fasipe from Texas Children’s discusses barriers that she’s noticed for her patients and solutions to overcome them.
Transcript
Jemela Williams:
Dr. Fasipe, what specific barriers do you see as the most critical in transitioning youth with sickle cell from pediatric to adult care, and how do mentorship programs play a role in overcoming these challenges?
Dr. Titilope Fasipe:
Yes, this is the question for me is the one that actually I care about the most in my career. How do we help our teenagers, adolescents, young adults, make it? How do they succeed when they move from pediatric care to adult care, and the barriers are so many. So I will start with the fact that most people moving from a pediatric doctor or healthcare system to an adult healthcare system have to change their doctor. And that doesn't seem like that should be a big deal, but the adult healthcare system is quite different from that of pediatrics. Everything from the cuteness of the hospitals, the colors on the wall, the way we attract and try to think about the psychosocial development of children. So that's a first, the jarring difference. But then there are systemic issues, barriers that have to do with the way the health care systems are run. Most children in our country with sickle cell disease tend to have Medicaid as their way of getting insurance coverage, and not all states continue Medicaid for sickle cell after childhood.
So I am living in a state where Medicaid ends by the age of 19 for most, and even though they have a chronic illness, they're not eligible for Medicaid later, and they're not even eligible for disability. Which is a whole other can of worms. So insurance is one of those big, big, big problems. And so if you don't have insurance, how are you going to go to an adult healthcare provider and get proper care, and when you try to do maybe the supportive programs like financial assistance programs, they have their own challenges as well, and so if you do not have the privilege or the luxury of having a parent that has insurance plan that's a private insurance plan that can cover you while you're a young adult, and for those that don't know, private insurance plans usually cover dependents up to the age of 26, that is huge, because adulting is hard, and if you have that support through those transitional years, that can mean so much. So let's take the sad scenario where you don't have insurance. So automatically you can imagine you lose access to your medications, let's say you were getting transfusions, you lose access to that. And you lose access to somebody who can be doing preventive care for you, you end up going to the emergency department more and more, and you end up doing hot potato and hospital shopping because you do seek care. But you're not always getting it in the right way. So insurance, and then that access to care to the various hospital systems. Another barrier is about who are the providers that are going to care for sickle cell disease. On the adult side, they're very hard to find. You talked about a whole city having one main place for adult hematology or for sickle cell providers. I have to tell you, I live in Houston, fourth largest city in America. I can count on my hand how many people expressively say, we can take care of sickle cell. I can count it on my hand, and it doesn't get up to five by the way, which is crazy. And you can imagine a smaller town or a state that doesn't even have as much diversity as a place like Houston, you're going to even have more struggles. So access to people who know what sickle cell is and how to care for sickle cell on the adult side is another barrier. So coverage and the right type of experts.
And then the healthcare system is challenging for various reasons, but you emphasized in our prior talk, stigma and that title of drug seeker. This seems to really come into play when you enter adulthood. As a teen, you might see it here and there, but as an adulthood, it is rare to find, I have not found a person yet who has told me they have not had this story, but the majority of people with sickle cell disease who go to a hospital looking for care for their pain, they have at least once been accused of drug-seeking or they appeared to get funding books from the healthcare team or things just didn't seem... You didn't feel like you were being looked at as a full patient, and that is a problem. That is a big problem. So, of course, if you get treated like that the first few times, one, you try to switch the hospital or you just avoid the hospital altogether until you're desperate. So I can go on and on, but those are the three biggest ones. The lack of insurance, access to experts and people who know what sickle cell disease is and how to care for them, and then also the issue with stigma.
So it is quite a challenge. It's critical. I love that this question is asking about mentorship programs, because that is actually something we can do. We think of when a problem is so big, we all get frustrated, and it's like...what I used to say what transition is, everybody says it's important, but it's hard to prioritize. But mentorship programs, that is achievable. And I know some community-based organizations that specialize in sickle cell disease who offer mentorship programs, and then also the hospitals themselves can consider doing mentorship programs, where part of being, adulting in sickle cell is knowing that you can make it, and if see somebody else that has made it, that just makes you feel so much better. I can't tell you, when we started this call and I saw you were going to be interviewing me, I lit up already. So just knowing somebody who has sickle cell disease or just seeing somebody else who has it, you automatically have that kindred spirit feeling and you're like, I salute you my sister, I salute you my brother. You just get that warm, fuzzy feeling and mentorship programs help you see that A, somebody has done this, and I can learn from them, and I can have hope because of them.
So I think if you don't have access to a mentorship program, it's one you should look into. I know there's some national groups that try to spread this out further, but I think it's a great investment for those looking for the one thing to change or one thing to do, this is a good first step.
Jemela Williams:
Definitely. Yes, I definitely understand that. That kindred feeling you get when you see, and you don't even have to know their name or where they are from, you just know they're a warrior. And they're probably going through the same things you are. But they're here. They're standing, they're good. They're here to see you. And yeah, it's a beautiful thing.
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