While serving in public life, a colleague and I engaged in an intense debate that was heartfelt on both sides. The hearing room was packed as the commissioners weighed the prospect of starting a new program, despite a projection from the budget office that there would be a shortfall in the next fiscal year. The question before us was whether or not to gamble that the projection was wrong. Should we fund the new program or preserve capital to maintain existing ones? Exasperated, at last, my opponent shouted into the microphone: “I’d rather save one child today than worry about theoretical children of the future.”
My heart was with her, but the argument was cavalier. I voted against the new program. As Helen Ouyang points out in her recent essay, when setting policy, we must realize that, one day, statistical clients of the future become real. (“Hashtag Prescription,” by Helen Ouyang, Harper’s June 2016, pg. 31.) I realize her warning is too dispassionate for parents whose children desperately need help. Logic has no place in their world, particularly if what they seek is compassionate-use for a trail drug that may be their son or daughter’s last hope. Who would be harmed if a promising drug was released early? Certainly not the child, exhausted yet clinging to life. The same challenge was raised in the 1980s when AIDS patients died in droves as they awaited FDA approval for experimental drugs. Eventually the hue and cry forced the agency to relent. It released some drugs early. But there’s always a cost when science is hurried. Think thalidomide, for example. (Click)
Aware of the dangers in early drug release, the Supreme Court ruled, “the terminally ill do not have a constitutional right to unapproved drugs.” Still, campaigns on social media persist, making resistance almost impossible. Since 2009, 99.4% of compassionate-use appeals have been granted. (Ibid, pg. 31.)
Before you stand up and cheer, consider. If compassionate-use becomes a widely successful means of obtaining experimental drugs, who will be left for the trials? Why risk receiving a placebo when a direct path exists to obtaining the experimental medication? Such short cuts can devastate medical studies. Ouyang explains: “Without research subjects, a company can’t conduct a trail; without a trail, a drug won’t be approved by the FDA; without approval, future patients can’t get the drug.” (Ibid pg. 29.) Equally problematic: do we want leave the distribution of unproven treatments to the vagaries of social media? Which patient should we support? The cutest? The most gut wrenching? And what happens when people become overwhelmed by too many campaigns? Do “friends” begin to look away and watch clips about cats being bathed?
If I were the mother of a dying child who might be helped by an experimental drug, I’d be rage against the coldness of my argument. But in such circumstances, would I be in the proper mindset to weigh present needs against the consequences to the future? History has taught me how to answer that last question. The program so passionately defended by my colleague years ago died within two years of its inception. The deficit it left took established programs with it and weakened the safety net for several years into the future.