Editor’s Note: In this insightful conversation, Alkemi CEO Betsy Lahue and patient advocacy leader Kimberly Neff discuss critical shortcomings in the pharmaceutical industry and advocate for a more inclusive approach to product development.
A conversation between Betsy J. Lahue & Kimberly Neff
(2.5 Min Read)
Executive Summary
Despite advancements in drug development, many life-changing treatments struggle to reach those who need them most due to gaps in strategy, particularly in addressing patient, family, and caregiver needs.
The Missing Voice in Drug Development
Betsy: Kimberly, let’s jump right in. At what stages in the pharma lifecycle do you think patient perspectives should play a bigger role?
Kimberly: Honestly? From the very beginning. Before a single investment is made. Before clinical trials are even designed. If commercial teams really want to identify breakthrough opportunities, they need to start by looking at unmet needs and not just from a market sizing lens, but from the lived experience of patients.
Betsy: We talk a lot at Alkemi about using advisory boards and patient insights to shape benefit-risk profiles and prioritize outcomes that actually matter. But I think the industry still defaults to treating patients as a checkbox item especially when it comes to payer and regulatory conversations.
Kimberly: Absolutely. And the truth is, many patients want to be involved, they just don’t know how. Especially in rare or underrepresented diseases, there’s often no clear on-ramp. We need better mechanisms to help patients participate earlier, more meaningfully, and more often.
Beyond Ethics: The Commercial Blind Spot
Betsy: What mechanisms are working today?
Kimberly: Existing frameworks like ICER’s patient council, NORD, and FDA’s Patient-Led Drug Development programs are great starting points. Partnerships like Cure SMA and Roche show what’s possible, but they’re still exceptions. We need more systemic pathways where patient input isn’t just welcome, it’s required.
Betsy: In addition to being the right thing to do, it’s also the strategic thing to do. Early patient insight can de-risk development and reshape the commercial case. We’ve seen payers undervalue treatments because the symptoms seemed “mild” only to discover later that those same symptoms forced patients into early retirement or caused daily disruptions. By missing these crucial insights, companies risk developing treatments that fail to address the most meaningful patient needs, ultimately undermining both their market adoption and commercial success.
Kimberly: Exactly. And that’s where storytelling comes in. Patient stories aren’t just nice-to-haves. They’re fuel for change. They help scientists, executives, and regulators stay grounded in reality.
Building Strategy With The Patient Voice
Betsy: Let’s talk about strategy. From your perspective, what makes for a strong partnership between advocacy groups and biopharma?
Kimberly: Trust. Early involvement. And shared impact goals. Look at the Cystic Fibrosis Foundation’s work with Vertex - $150M in funding, but also real co-creation. Or the Michael J. Fox Foundation guiding research priorities. These go beyond surface-level collaboration into meaningful impact.
Betsy: Agree. On the company side, we need to move beyond checking the box. Patient input shouldn’t be filtered through a provider or collected after the fact. We’ve seen the data and physicians often underestimate the full burden experienced by patients. That disconnect can lead to strategic missteps – starting in product development and carried through commercial strategy, pricing, and ultimately adoption.
Kimberly: Couldn’t agree more. So how do we close that gap?
Betsy: Build long-term patient partnerships and use real-world data creatively, for example wearables, pulse surveys, patient led registries to build an evidence-based foundation for all decisions. Above all, shift the industry mindset from patient advocacy as a soft function to a required innovation input. Direct patient insights and patient-centered evidence must be curated throughout product development as a strategic lever.
Kimberly: Well said. When patient voices are integrated from the outset, we don’t just get better products. We get better outcomes.
Betsy: And fewer delays. Fewer surprises. More trust. That’s the future I want to build with you, with advocacy leaders, and with every innovator who’s willing to listen.
Betsy J. Lahue is Chief Executive Officer of Alkemi, helping biopharma leaders align access strategy with the real-world needs of stakeholders--especially patients.
Kimberly Neff is a healthcare branding and patient advocacy expert helping organizations bridge the gap between patient voice and product value.