Bringing Huntington’s Story to the Public: Q&A with Heather DeMyers

Pharmaceutical Executive spoke with Teva’s vice president of US innovative medicine’s marketing Heather DeMyer about the company’s new awareness campaign Honestly HD. The campaign features Will Forte and his brother-in-law, who lives with Huntington’s disease. The duo shares their story of life with the rare disease in hopes that it will raise awareness and help people to seek treatment.

Pharmaceutical Executive: How did this partnership with Will Forte come to be?
Heather DeMyers: Teva learned about Will’s personal connection to Huntington’s disease (HD) after he shared his family’s story with a local TV news station. We hope by sharing Will and Doug’s story that we can raise awareness of the realities of HD and demonstrate how others can support people living with HD.

PE: What unique struggles do patients with Huntington’s disease face?
DeMyers: HD is a hereditary brain disease caused by a mutation in one gene in a person’s DNA. This mutation affects an area deep in the brain that helps control movement, mood, and thinking. The condition can cause emotional changes like depression or irritability, cognitive changes like memory or concentration problems, and motor changes like involuntary body movements called chorea. While it’s not the only symptom of HD, chorea can have a significant impact on daily activities and progressively limit people’s lives, but early treatment of chorea can help HD patients stay independent longer.

PE: What are the origins of Teva’s Honestly HD program?
DeMyers: Honestly HD is a Teva program launched in 2022 that aims to provide information, inspiration, and resources to help people understand what to expect with Huntington’s disease (HD) chorea – one of the most visible and treatable symptoms of HD–––and how to talk to their doctor about preserving independence.

As part of Teva's partnership with Will Forte, his family's story is featured as a "Story of Hope," along with written stories shared by others in the HD community on the Honestly HD website and social media channels.

PE: How important is it to personalize patients’ stories when dealing with rare diseases?
DeMyers: Despite being considered a rare disease, HD profoundly impacts 41,000 Americans, and our unwavering commitment at Teva is to ensure every one of these patients and their families knows they are not alone in their journey. Personalizing patient stories humanizes the diagnosis, fosters empathy, and understanding by showcasing real individuals and families grappling with HD's complex challenges. These narratives are vital for driving public awareness and understanding as well as inspiring advocacy for better support and treatments.

PE: What is the overall awareness level of Huntington’s disease among the general population?
DeMyers: Generally, the overall awareness level of HD is quite low. While some individuals may recognize the name, detailed understanding of its genetic nature and impact on families is not widespread. This lack of awareness is largely due to its rarity compared to more common neurological conditions, often leading to delayed diagnosis, misunderstanding of symptoms, and significant isolation for affected individuals and their families.

This stark reality is precisely why we chose to partner with Will Forte to increase awareness of HD. With Will’s help, our goal is to elevate HD to a disease that is recognized, understood and supported, thereby addressing the critical gaps in awareness that contribute to the challenges faced by the HD community.