The drug was still experimental, but clinical trials suggested it could be a lifesaver for patients with a lethal form of blood cancer called multiple myeloma.
And those patients were clamoring to get it. They overwhelmed drug maker Janssen Pharmaceuticals with requests for the medication.
Most companies don’t know how to handle such requests. Often, it’s the richest patients, or the best connected, or those who run the most compelling social media campaigns who end up getting the drug. Everyone else is out of luck.
Janssen’s parent company, Johnson & Johnson, decided on a unique approach: Rather than try to deal with the barrage of requests itself, it asked a leading bioethicist to create an independent committee to determine which desperate patients could get access to the limited supplies of its experimental drug, known as daratumumab.
A year and a half later, the company and patient advocates deem the process a success — and the bioethicist, Arthur Caplan, is looking to replicate it with other drugs, starting perhaps with a psychiatric therapy.
But the novel system has also raised some thorny questions.
One ethicist who strongly supports the concept in general nonetheless asks whether it is truly wise to eliminate all personal lobbying and decide who gets access to drugs based only on anonymous medical records. What if someone like scientist Stephen Hawking is in the mix, he asked: Shouldn’t he get priority access to a lifesaving drug, for the good of humanity?
“Imagine if he wasn’t saved, what a difference in the world there might have been,” said Dr.