André Harris is a social work PhD student from Houston and a passionate advocate for young people with sickle cell disease (SCD). He knows all too well how hard it is to be a teen living with SCD.
“I grew up in a single-parent home and my mother had to work. As a child, I had to learn about my SCD and how to navigate not only the healthcare system but the systems of transportation and social services by myself so that my mother could provide for us.”
Life is already overwhelming with the transition into adulthood, but it’s made more challenging with a disease that can cut life tragically short. The average life expectancy for those living with SCD remains up to 30 years lower than that of the average American.1
SCD is a genetic blood disorder more common among Black and Hispanic Americans.2 From birth, the disease sets out to deform and destroy red blood cells, causing excruciating pain during an attack (known as a “pain crisis”), and if left untreated, organ failure and death. The CDC estimates that 100,000 Americans are affected by the disease.2
Within the U.S. healthcare system, SCD exposes the painful vulnerability of its minority and low-income affected individuals, with these inequalities amplifying as children transition to adulthood. Though great strides have been made to reduce pediatric mortality and morbidity in SCD, the period of transition leads to significant care gaps, and sadly is often marked by increased hospitalizations and mortality.
“SCD patients need healthcare to be more supportive between ages 16 and 30. It’s the most vulnerable time in their life.” says Dr. Ifeyinwa Osunkwo, M.D., MPH, Forma’s chief patient officer and senior vice president. “Even with good care, it’s still hard. Without good care, it’s devastating.”
Transition is an important next step in the life of teens living with SCD. It is the process culminating in the point at which a patient (usually age 18) must move from the warm, protective arms of pediatric care to adult care. It comes at a critical time as young people are poised to navigate the complexities of new healthcare systems, and insurance changes with an increased focus on education or employment — while simultaneously managing their disease. There is also the dark shadow of systemic racism, unconscious bias, and the stigma of the disease to contend with, impeding prompt and ongoing access to appropriate care.3
”As sickle cell providers, you need to prepare a patient, try and reassess the gaps that this patient may have so that when they do get to the adult side, they’re successful,” says Nirmish Shah, M.D., associate professor in the division of hematology at Duke University and director of their sickle cell transition program.
Both Harris and Shah have partnered with formabridge — an initiative by Forma Therapeutics, a clinical-stage biopharmaceutical company — to help SCD patients navigate the complexities of managing their transition.
Within this program, Forma launched a comprehensive online resource, www.formabridge.com, curating available information and tools for the SCD community to help patients and their caregivers prepare for and successfully transition into adult care.
According to the Forma SCD Trend Report: The State of Transition, the top patient challenges during transition include suboptimal support in moving to an adult provider, lack of mental health support, and limited availability of disease information. Many patient respondents indicated the transition conversation did not start until 17, well beyond the recommended age of 12, meaning patients aren’t properly prepared.4
“If there’s one thing for a patient to understand about improving the transition process, it would be to know everything they can about themselves and their disease. By understanding their disease, they understand what’s coming, and how to prepare,” says Dr. Shah.
Through the creation of formabridge, Forma commits to working with the community to empower and support young adults living with SCD so that no one is lost in transition.
For more information on SCD transition, please visit formabridge.com.
References: 1. Lubeck et al., 2019; Piel et al., 2017. 2. Centers for Disease Control and Prevention. (2019, October 21). Sickle cell disease (SCD). Retrieved from link. 3. Power-Hays A, McGann PT. When actions speak louder than words—racism and sickle cell disease. New England Journal of Medicine. 2020 Nov 12;383(20):1902-3. 4. 2021 Forma Sickle Cell Disease Trend Report: The State of Transition, 1st ed., Watertown, MA, Forma Therapeutics, 2021.