Improving Access to Rare Disease Treatments: Challenges and Opportunities for OM Research

Abstract

Rare diseases are, paradoxically, not rare: collectively, they affect more than 300 million people worldwide. Yet more than 95% of these diseases still lack an approved treatment. When therapies do exist, prices are steep with a median of $200,000 per patient per year. This highlights a central tension between rewarding the innovation needed to develop these drugs and making them affordable once they arrive on the market.

In the first part of the seminar, we will focus on strategic decisions related to new drug development for rare diseases and analyze different incentive schemes. To encourage the development of new drugs for rare diseases, governments have already introduced new subsidy programs. However, there is no consensus on how these programs should be designed. We formulate a Stackelberg game and analyze whether it is optimal to subsidize pharmaceutical manufacturers, patients, or both under different pricing and payment schemes.

In the second part of the seminar, we will reflect on future Operations Management (OM) research directions to support the rare disease landscape. We will examine key challenges and research opportunities from the perspectives of governments, industry, insurers, and patients. The application of OM methodologies to the rare disease landscape is still limited, but it offers significant potential to advance new drug development and reduce healthcare inequalities for patients and their families.

About the speaker

Tugce Martagan is an Associate Professor in the Department of Mechanical and Industrial Engineering at Northeastern University in Boston. She received her Ph.D. in Industrial Engineering from the University of Wisconsin–Madison in 2015. She specializes in stochastic modeling and optimization with applications in the pharmaceutical industry. Her research has been recognized by several international awards, including the Franz Edelman finalist award for her joint work with Merck, first prize in the POMS Applied Research Challenge, first prize in the Decision Sciences best paper award, and first prize in the INFORMS TIMES dissertation award. She has also received several teaching awards, a Marie Curie research fellowship from the European Commission, and the VENI (early-career) and VIDI (mid-career) grants from the Dutch Science Foundation. She is a keynote speaker at the 2024 INFORMS Annual Meeting and an associate editor of the INFORMS journals Operations Research and Manufacturing & Service Operations Management.

Language

English

This is a free seminar. Registration is mandatory