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Instead, often the main hurdle, as the Forbes family observed, is whether the drug company has an expanded-access program for a specific drug and if it does, whether it approves the request. There is no requirement for companies to report how many requests they accept, though some larger drug companies make this information public.

Perhaps more important, it’s unknown to what extent families’ media campaigns affect these decisions. This is what troubles Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “If you have resources, then you hire PR people, you build your own website, and you have a pretty good chance of guilting or shaming the company into providing something to you,” he told me. “I understand why people do it, but it’s hardly an equitable system.”

Dr. Caplan has pioneered a possible solution. Working with Janssen Pharmaceuticals, a part of Johnson & Johnson, he heads an advisory committee of physicians, ethicists and community members who evaluate these requests and then develop a recommendation for the drug company. Much like the U.S. system for organ allocation, which Dr. Caplan also helped develop, this committee aims to ensure a fair allocation of a limited resource. Drug companies should not be swayed to say yes by the most sympathetic photos or pushed to say no because of a concern that a negative outcome could impact consumer confidence in a drug. Instead, the committee applies consistent criteria to each anonymous potential recipient and renders a decision based on medical factors rather than the pathos of a personal story, wealth or media prominence.

This is a start, particularly when coupled with better tracking of outcomes and improved education for clinicians about how to enroll their patients in clinical trials and navigate expanded access if those trials aren’t a possibility. A lawyer by training, Ms. Forbes did most of this navigation and advocacy on her own, but there are many families for whom that would not be possible. And when clinicians’ time is a limited resource, how much of this process can they realistically take on for a drug not yet proved to work?

That is the question behind so much of this conversation. How far do we go when the alternative is death? And what is sacrificed in the process? “You’re holding out hope that you might be that rare one, that if you can just stay alive long enough for the next drug, that might change things,” Ms. Forbes told me, reflecting on those final weeks.

Even though her husband never did receive the expanded-access drug, she does not regret that they devoted so much of their remaining time and effort to pursuing it. They believed that this medication would work, she said, but they were also able to consider a reality where Mr. Forbes did not live to see it.

“Despite how it all ended, it was good for Michael to feel positive and hopeful,” she said. “It was very good for me, because there was no stone unturned.” That is not the type of victory they wanted, but it is something.



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