Catastrophic Rights: Experimental Drugs and AIDS

Maria Issa is a research associate in the Department of Laboratory
Medicine at the University of British Columbia.

John Dixon, president of the B.C. Civil Liberties Association and a
self-described “moderate civil libertarian,” sets out to define and
to lay the philosophical foundations of “catastrophic rights.”
Simply stated, catastrophic rights mean the right to individual choice
in a situation where all choices culminate in death. For persons with
catastrophic illnesses to whom the therapeutic authorities have no
further life preservers to offer, there should remain the right to have
access to untested, experimental drugs that could offer nothing, or the
world. Dixon argues that this access is a right to be demanded and not
compassion to be pleaded for. But catastrophic rights have an impact on
the studies, development, and testing of new drugs. If catastrophic
rights assure access to untested drugs, how can they be tested
correctly? The interface between catastrophic rights and public-health
rights is examined and defined in a number of scenarios. These scenarios
may have been coincidental or instrumental in the establishment of a new
style of drug trial. The earlier “experimental-versus-placebo”
trials have been supplemented by “experimental-versus-conventional”
trials, with the added proviso that as soon as an incremental
improvement is seen in the “experimental” arm, the
“conventional” arm has immediate access to the new treatment.

Unfortunately, the latter do not entirely eliminate the need for the
older, more brutal style of trial. With catastrophic individual rights
defined, claimed, enshrined, only one question remains—do these rights
erase the courage of those who, having accepted inevitable death, choose
not to claim their rights in order that later, others will not need to
claim catastrophic rights?