Sickle-cell disease, or SCD, is a rare and genetic blood disorder that causes red blood cells to become fragile, sticky, and sickle-shaped. The transformation from typical red blood cells to sickle red blood cells cause severe symptoms, such as infections, pain, and anemia.¹

Cassandra Trimnell first heard of the Congressionally Directed Medical Research Programs when the Sickle Cell Disease Association of America nominated her to participate on the peer review panel as a consumer reviewer for the Peer Reviewed Medical Research Program, or PRMRP, in fiscal year 2023. Congress added sickle-cell disease as a PRMRP Topic Area in FY23.

“Participating on the panel has expanded my knowledge base of current research initiatives, which ultimately provides me with immense hope for the future,” Trimnell said. “Funded research opportunities and the understanding of research initiatives ultimately translates to the betterment of treatment and care options for sickle cell disease and other underrepresented diseases.”

Trimnell also said that PRMRP diligently worked to ensure fair, balanced, and thorough feedback, and felt honored to be a part of the peer review process.

Trimnell was the first child diagnosed with SCD through Iowa’s Newborn Screening Program in 1987. As a child, she said that she remembers taking daily medications and being alone indoors during recess because extreme temperatures could trigger a pain crisis and send her to the hospital. She missed out on group activities and spent many birthdays in the hospital. As an adult living with SCD, Trimnell said living with the pain, fatigue, and daily medication regiment is a constant struggle. She said that she felt the lack of informed healthcare practitioners also complicates her care as misconceptions and stigmas are contributors to poor health care.

Trimnell said a lifetime of living with this disease and her passion for educating people about SCD pushed her to become an advocate. According to Trimnell, she is a certified sickle cell educator and the founder and executive director of Sickle Cell 101, a nonprofit organization focused on educating individuals about SCD.

Sickle Cell 101 hosts the largest and most comprehensive digital platforms for real-time generated community insights and patient experience data with over 50,000 followers across social media platforms and 115 countries.² Trimnell said her and her team foster collaboration between individuals and the research community by hosting a patient-focused web resource called, SCD Studies to help individuals with SCD find and learn about related clinical trials. Trimnell said she built programs with educational resources and advocacy efforts to prioritize patients through their partnerships with advocates, research institutions, hospitals, governmental organizations, corporations, and other advocacy groups.

From her role with Sickle Cell 101, Trimnell hears more about patient and caregiver experiences, contributing to her participation with other organizations for SCD research and patient advocacy. She said that she is a member of the National Heart, Lung and Blood Institute’s Sickle Cell Disease Advisory Committee to discuss NIH-funded research. She said she also serves as a co-investigator for the CaRISMA clinical trial hosted by the University of Pittsburgh.

Trimnell said she hopes advocacy efforts will lead to more treatment options for individuals living with sickle cell disease.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision.

References:

¹Sickle Cell Disease. Johns Hopkins Medicine. https://www.hopkinsmedicine.org/health/conditions-and-diseases/sickle-cell-disease

²Highlighting Sickle Cell 101’s 2020 Activities. Sickle Cell 101. https://www.sc101.org/blog-2020-2/