Pushing Past Failure: Collaboration across the rare disease community

Michael Thomas, Rachael Pius, Eitan Lefkowitz and Keely Anderson


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Daniel Coyle, author of the New York Times best-seller The Talent Code, describes the innate human reaction to failure in a 2016 blog post: “We wince. We close our eyes. We slowly look to see if anybody noticed us. Then we ignore it, or, better, pretend it didn’t happen. It’s basically a full-brain allergic response—minimize it, keep quiet, and move on.” What he’s getting at is a missed opportunity to learn in the moment, a notion that those in the rare disease community know firsthand.

The rare disease community has defaulted to a so-called psychological “allergic reaction” to failure for far too long. While recent gains within the space are celebrated publicly by rare disease advocacy organizations, government agencies and pharmaceutical companies, there’s little work being done to examine the systemic failures that are limiting the degree of progress in successfully researching and bringing to market therapies for rare disease patients.

Misaligned incentive structures, trust issues, inconsistent funding, archaic approval systems and differing views on the ownership of data are fundamentally failing rare disease patients—and their families and caregivers—who are already dealing with the physical and emotional burden of disease.

About the Experts

Michael Thomas is the office managing principal in ZS’s Philadelphia office and leads the rare disease center of excellence, helping to extend ZS’s unparalleled domain expertise to organizations large and small focused on the development of rare disease therapeutics. During his 14 years at ZS, Michael has worked across nearly all of ZS’s core disciplines, including sales, marketing, technology and operations. With a greater emphasis on commercial organization design, sales force strategies and commercial operations excellence, Michael has spent time working to enable growth of small and mid-size pharmaceutical companies. Michael has been in management consulting his entire career, focused almost exclusively in the healthcare and pharmaceuticals sector. Michael holds an MBA from The Wharton School of the University of Pennsylvania, and a B.S. in marketing and logistics from the University of Maryland, College Park.

Rachael Pius is a manager in ZS's Philadelphia office and a subject matter expert within the patient and consumer marketing practice. Since joining ZS in April 2016, Rachael has been focused on helping clients to benchmark and design best-in-class patient support services and resources. She is also deeply involved with helping companies to think through peer-to-peer strategy as well as how to bring the patient voice in house. Rachael holds a B.A in psychology and sociology from the University of Wisconsin, an M.A. in social science from the University of Chicago and an MBA from the University of North Carolina’s Kenan-Flagler Business School.

Eitan Lefkowitz is a strategy, insights and planning associate consultant in ZS’s Philadelphia office. Since joining ZS in December 2014, Eitan has focused on strategies for commercializing innovative therapies for small patient populations. He has worked with clients across the rare disease and oncology markets to design their customer-facing organizations, develop and execute commercial strategy, and support patients living with these conditions. Eitan holds a B.S. in chemical engineering from the University of Maryland, College Park.

Keely Anderson is a strategy, insights and planning associate consultant in ZS’s London office. Since joining ZS in August 2014, Keely has worked across sales and marketing disciplines, with a focus on payer, provider and patient insights as well as sales strategy. She has worked across U.S. and EU markets and across therapy areas, including oncology, cardiovascular, HIV and rare disease. Keely holds an M.S. in public health with an emphasis on health policy from Johns Hopkins Bloomberg School of Public Health and a B.S. in biology from the University of California, San Diego.