Karla Lant is an experienced freelance writer, journalist, editor, and adjunct professor. She focuses on science, technology, politics, education, and technical writing. Browse by publication below.
When we consider rare disease research and apply a cost-benefit analysis, it becomes clear that the benefits of this kind of research far outweigh the costs. Unfortunately, though, too often this kind of assessment stops short; only the immediate benefits of the research are considered. Discovery of possible cures, treatments, or preventative tools for the diseases in question are generally thought to be the only benefits.
When diseases are very rare, the patients enduring them — or, in many cases, their parents — often know more about the diseases than any experts they consult. This situation leads to several serious problems that impact patients and the research community. Fortunately, there are reforms that would have tremendous beneficial effects on both rare disease sufferers and the medical community that serves them.
In recent years, medical research and drug development have transformed the outlook of countless people living with diseases that were formerly untreatable. Desire for tenable treatments and cures, however, is not sufficient to prompt the ongoing development of new therapies. Policymakers now face a challenge: to create and maintain a...