SPEAKERS:
· Tammeka Evans Cooper, Senior Director, Global Public Health and Innovation, ViiV Healthcare (Moderator)
· Justin Mattice, Senior Vice President & General Manager, Branded Specialty Business Unit, Endo
· Kara Licurgo, Vice President of Neuroscience Market Access and Health System Strategy, Eli Lilly & Company
· Laurie Ferranda, AVP Strategy Development – Head of Commercial Strategy, Merck
· Phil Johnson, Chief Commercial Officer, Evidation
KEY TAKEAWAYS:
• Only 30% of patients fill prescriptions after diagnosis, contributing to 200,000 preventable deaths
• Up to 40% of GLP-1 users obtain treatments outside traditional healthcare systems
• Disease stigma prevents care-seeking even when effective treatments exist across therapeutic areas
• Lilly integrates patient voices into market research and trial design from earliest stages
• AI-powered hub communication analysis reveals critical post-pandemic gaps in patient support
As pharma companies invest billions in drug development and HCP engagement, a crisis point emerges after the prescription is written. Ferranda's research reveals a stunning reality: "Even after a patient gets a prescription, only about 30% of those patients fill that prescription." This contributes to an estimated "200,000 people that die every year from medication errors that are preventable."
Meanwhile, entire patient populations operate beyond pharma's visibility. Johnson's direct-to-patient platform data shows
"35 to 40% of GLP-1 users are getting their medication outside traditional clinical pathways—so telehealth or MediSpas or weight loss clinics."
Evans Cooper framed the panel's mission at Pharma Customer Engagement USA: refocus the industry on where patients actually are, not where data systems expect them to be.
The Awareness Paradox in Underdiagnosed Conditions
The pharma industry's focus on competitive therapy areas can obscure a fundamental reality: some of the largest patient populations remain invisible. Mattice highlighted conditions collectively affecting 26 million Americans yet lacking public recognition. "There's 13 million men in America that have Peyronie's disease. Dupuytren's contracture—eight million Americans have that. Palmar fascial fibromatosis—five million Americans have that."
For these populations, awareness itself represents only the beginning. "With our conditions, it's about awareness first—'nothing's wrong with you, you have a condition, it's real, there's a treatment option available,'" Mattice explained. Unlike well-known conditions where patients understand symptoms warrant medical attention, these require fundamental education that a treatable condition exists at all.
Disease stigma compounds awareness challenges even for recognized conditions. Licurgo shared a powerful example about Alzheimer's care. "Someone at the table shared her current experience with a loved one who has Alzheimer's. But her loved one says there's nothing else to do because of the stigma that comes with that." Evans Cooper drew parallels to ViiV Healthcare's HIV work, noting "stigma is a huge issue for HIV, even in the prevention world."
The economic stakes are substantial. Licurgo noted Alzheimer's costs were "estimated at over $781 million in 2023. That number is projected to be 2 billion with a B by 2060 if you don't have meaningful innovations coming to market." Yet financial burden alone won't drive patients to care if psychological and social barriers remain unaddressed. Patient-centric value requires solving for the whole person, not just the clinical profile.
Data Blind Spots in Non-Traditional Care
Pharma commercial strategies built on claims data and electronic health records face an existential challenge: patients are increasingly accessing care through channels that generate no traditional data footprint. Johnson's direct-to-patient platform reveals a massive hidden population operating entirely outside pharma's visibility. With 12% of American adults having taken GLP-1 medications, tens of millions of patients now obtain care through compounding pharmacies, telehealth services, MediSpas, and weight loss clinics.
The implications extend beyond obesity and diabetes. Patients are exploring these same channels for dermatology and respiratory medications, suggesting a permanent care delivery shift rather than a category-specific anomaly.
Patient preference research itself can mislead when built on incomplete data. "There's a lot of people who actually prefer injectables for a lot of reasons—convenience being mainly one," Johnson explained. Companies building strategies without directly engaging patients risk misallocating resources and missing actual needs.
The post-pandemic environment intensified these challenges in unexpected ways. Mattice described how Endo discovered critical gaps through AI-powered analysis of hub communications. "We knew that after the pandemic there was a lot of turnover in office staff. They lost their really good people that were experts on how to buy and bill products."
Patients calling specialty pharmacies received inconsistent information from undertrained personnel, creating friction at the critical prescription-to-initiation moment. The insight prompted immediate strategic changes. "Patients do not go on therapy without calling the hub first because when they call the hub first, they're now trained better," Mattice explained.
Patient Voice as Development Imperative
The timing of patient engagement determines whether insights shape strategy or merely validate predetermined plans. Licurgo described how Lilly embeds patient perspective from the beginning of development.
"At Lilly we look to incorporate patient voices as early as possible in our global market research. We bring this piece of insight into clinical trial design from a user perspective."
Evans Cooper shared a concrete example from ViiV Healthcare's clinical trial design. "We brought in both patient and provider advisory groups. We shared the outline of that protocol and it really made all the difference in the world." Discovering operational barriers during ideation prevents costly protocol amendments later.
Ferranda highlighted an innovative approach that brings patient perspective directly into organizational culture. "I saw this at Gilead—they actually reached out to their own employee base and built out an employee-based advocacy group. So these were their own employees who were living with or caring for people with the conditions they treated." This model provides ongoing authentic patient perspective without external advisory board overhead while reinforcing mission-driven culture internally.
The alternative—waiting until late-stage development—results in strategies built on assumptions that may not reflect how patients actually experience care, prefer treatments, or navigate systems.
Building Trust Through Transparency
Pharma's ability to execute patient-centric strategies depends on solving a trust deficit that dooms most direct engagement efforts. Johnson acknowledged the industry's challenge frankly: companies have built "examples of websites or apps or platforms that were supposed to build this incredible community of people just for your pharma company that went dormant."
Evidation's response addresses the economic relationship directly.
Johnson explained. This transparency-first model acknowledges patients understand their data has commercial value and resent one-sided extraction.
The path forward requires moving beyond legal consent to genuine partnership. In an environment of drug pricing scrutiny and low industry favorability, patient-centric value cannot be a marketing claim. It must be demonstrated through actions that prioritize patient needs even when inconvenient for traditional business models.
The panelists' closing visions converged on simplification and patient empowerment. Licurgo called for accessible early detection through simple blood tests drawable in any physician office. Ferranda advocated for moving beyond co-creation to truly patient-led solutions. Johnson emphasized support models that extend beyond the sale to ongoing care navigation. Mattice stressed democratizing best practices across the industry.
Success means meeting patients where they are—geographically, economically, psychologically, and increasingly, outside traditional healthcare systems entirely. The companies that solve for the whole patient journey, from awareness through adherence, while building trust through transparency, will create the long-lasting brand impact that survives in an era of fundamental care delivery transformation.
In order to get you the highlights of Pharma Clinical Innovation USA 2025 faster, we are using generative AI technology to summarise the transcripts of the sessions. The conference organiser is checking the summary for accuracy. If you have any feedback about the summary, please contact lucy.fisher@thomsonreuters.com
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