Patient and Advocate for Sickle Cell Disease

Listen to FIECON's latest "Patient Perspectives" podcast hosted by Tyler Piazza , BD Director at FIECON, featuring an insightful interview with Kevin Wake, M.S., CHW , a leader for sickle cell disease patient advocacy and a health outcomes industry expert.

Even though my doctors told me I probably wouldn't live past the age of 25, I think that really impacted me to be more aggressive with my education and to prove them wrong.

Kevin, who was diagnosed with sickle cell disease at nine months old, is now the president of URIEL E OWENS SICKLE CELL DISEASE ASSOCIATION OF THE MIDWEST and serves on the board of directors for the International Consortium for Health Outcomes Measurement (ICHOM) . This episode delves into Kevin's lifelong experience managing the disease and how his career in the biopharmaceutical industry gives him a unique perspective into the sickle cell patient experience.

What are the patient, caregiver, and societal burdens of Sickle Cell Disease? How did Kevin's diagnosis shape his career path? What is the future of gene therapies for sickle cell disease? Click here to listen to the full episode:

Key Takeaways:

• Economic and Societal Challenges of Sickle Cell Disease: Sickle cell disease incurs high healthcare costs due to frequent hospitalizations and lifelong symptom management. Limited specialized care and healthcare disparities among underrepresented populations worsen disease management and outcomes. Additionally, patients often face stigma and social isolation, which affect their mental health and access to care.
• Biopharmaceutical Industry Responses: Since 2017, new FDA-approved treatments and gene therapies have been introduced, offering better management and potential cures. Though, patient support for such therapies hinges on society shifting the focus from high list prices to reimbursement potential. Improved comprehensive care and cost-effectiveness models will be crucial to reducing patient costs.
• Raising Awareness Through Advocacy: Advocacy groups such as Kevin's play a critical role in raising awareness, providing personalized support, and ensuring patients receive their necessary care. These groups bridge the gaps between patients, providers, and the biopharmaceutical industry.

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FIECON's vision is to use economics for the good of humanity. In a series of podcasts, we talk to patient advocates about the unmet needs, patient journey, and future treatments in target therapeutic areas.

To listen to more patient perspectives on rare diseases, subscribe to our podcast on Spotify at: https://open.spotify.com/show/2pGKL5RrDRGoyPbg5hw93l

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