Gene Therapy's Field of Dreams: If You Build It, Will We Pay?
32 Pages Posted: 23 Apr 2019 Last revised: 16 Jun 2021
Date Written: March 26, 2019
Long overpromised and underdelivered, gene therapy has at last achieved clinical validation and, with the advent of improved gene editing technologies such as CRISPR, seems poised to play a rapidly expanding role in medical care. However, some of the intrinsic qualities of gene therapy pose a unique challenge to our health insurance model. Gene therapy is costly for a number of reasons. It is “personalized medicine,” which means that treatments are individualized and not for a broad audience. Additionally, the goal of gene therapy is to provide a one-time cure, so the cost is upfront and not spread over time as it would be with conventional drugs or therapeutics. As our experience to date illustrates, these issues of cost may adversely affect access. In this Article, we argue that a lack of broad access to gene therapy will deepen existing health inequities and may create a society of genetic haves and have-nots, where certain genetic diseases become something that happens only to those who cannot afford treatment. This in turn may increase stigma and decrease resources for affected individuals. For these reasons, the success of gene therapy must be considered as inextricable from issues of cost and coverage.
Keywords: gene editing, insurance, health equity
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