“Transition age is when you start to encounter the discrimination a lot more, because you're not a cute little kid anymore that everybody has empathy for. You’re an adult, you’re grown and so they change, you receive different treatment.” -Patient

"When I turned 26 last October, I was under the impression that I would be kicked off my parent’s insurance at the end of 2019, but I got kicked off their insurance at the end of October and I was scrambling to try to fix that because my insurance didn't kick in until January 1, 2020, [...] I had a doctor's appointment that needed to be covered.” -Patient

“I think [my pediatrician] did really well with me as a patient in that time period, but I didn't get transitional information. I didn't get that hand off. [...] [On transitioning to an adult healthcare provider] It just seemed like there wasn’t education on sickle cell, it didn’t seem like she knew how to approach or make a plan for me, or whatever it was. I didn't trust them being able to handle my care. [...] I think, even when I went to see my hematologist there was never a specific, this is your plan of action, this is what you need to do for you. It was just very generalized, this is what normally affects sickle cell patients, so this is the path we’re putting you on.” -Patient

Caregivers of children with SCD bear the burden of all care coordination, decisions, life interruptions, and more. Coordinating primary care, making healthcare and treatment decisions, paying for care, managing work and school absences when a child needs to go to the ER or be hospitalized are some of the caregiver's responsibilities. Healthcare for children with SCD is generally more welcoming, empathetic and knowledgeable than adult care.
When patients with SCD approach adulthood and need to rely less on their caregivers, they face many new and unfamiliar barriers: Securing multiple providers they might not fully understand, learning about health insurance options, making all their healthcare decisions, negotiating sick leave at work and school, being met with bias and discrimination in healthcare. This happens right around the time when they want to be most independent and to blend in with their peers, which also happens to be the time when SCD complications can become increasingly serious.

Challenges

• How might we facilitate the information flow between pediatric care and adult care?
• How might we educate SCD young adult patients on health insurance options before they need to make decisions?
• How might we educate and empower SCD patients to handle their condition and treatment before reaching transition to adult care?
• How might we help caregivers assist in helping SCD patients gain more independence?
• How might we assist SCD patients in finding and understanding their healthcare options?
• How might we empower young adult SCD patients to get their unique needs met at work and school?
• How might we ensure young adult SCD patients' rights are met at work, at school, and in healthcare?

Learn More:

• Inspiration: Areas of Opportunity >
• Recommended Reading >
• Data Sets >