One might expect that some of the exciting research with minimally conscious patients in the last two years would bring more money to the field, but that has yet to happen. In early November, Schiff received disappointing news: the National Institutes of Health, the primary biomedical funding agency in the United States, had declined to fund larger studies of the diagnostic methods he and others have been developing. He says that while some grant reviewers are excited by the recent findings, others are reluctant to spend money on a group of patients they see as beyond hope. “I think it shows a discriminatory bias against this patient pool,” says Schiff.
Neurologists studying disorders of consciousness say fatalism about their patients’ prospects extends far beyond the walls of funding organizations. Wallis’s family, for example, petitioned for a neurologist annually for 19 years without success. And Schiff says the families of patients enrolled in his studies often thank him for being interested at all. “Their uniform experience is that no one cares,” he says. “They are completely abandoned by people who would otherwise have taken care of them.”
If Schiff and others are right, this population of abandoned patients includes many people aware of their surroundings. And Wallis’s recovery serves as an example of just how much some of these patients might be able to improve if they can be gently prodded back to the world of full consciousness. As Wallis works diligently on his rehab exercises, Schiff continues his dogged search for clues as to how to spark such a recovery in others, coming ever closer to understanding the mysteries of consciousness.
Emily Singer is the biotechnology and life sciences editor of Technology Review.