The media frenzy surrounding the Ebola crisis in West Africa shows that many journalists don’t understand that an experimental drug is just that – a scientific experiment. It is not a “breakthrough” drug or a “cutting-edge treatment” or a prize to be envied, unless or until it is proven to be safer and more effective than nothing.
Ebola is a deadly disease, but it doesn’t kill 100% of those who are diagnosed. Experts estimate that this Ebola strain kills 60% of patients. That’s horrific, but not high enough to say with certainty that a person who took the experimental drug and survives has been saved by the drug – as Sanjay Gupta announced on CNN.
The CDC points out that some Ebola patients recover with no treatment other than “supportive care.” We don’t yet know if the experimental drug for Ebola, ZMapp, helps patients more than supportive care. Nevertheless, the hype keeps growing and pressure on the FDA is mounting to make the treatment more available. The FDA already responded to that pressure by making another Ebola drug, TKM-Ebola, more available, even though it is also not proven safe or effective.
In addition to the “we need new drugs faster” mantra in the U.S. -- which is almost as strong for every other new drug as it is for Ebola drugs -- one of the messages coming from overseas is that the U.S. is hogging this miracle drug for its own citizens. USA Today reports that, “Two Americans with Ebola received at least half of the world's supply of a drug that might be able to change the course of the deadly virus. Some people are asking how to allocate additional doses of this drug and whether it was ethical to give those drugs to American missionaries when they weren't available to West Africans suffering from or fighting the outbreak…. Anthony Kamara, a 27-year-old man riding a bicycle in Freetown, Sierra Leone, said ‘Americans are very selfish. They only care about the lives of themselves and no one else.’"
Medical ethicists point out that it is appropriate to give limited drug supplies to medical missionaries such as Nancy Writebol and Kent Brantly, because as first responders they got sick caring for Ebola patients. And, the FDA already has a humanitarian exemption that allows patients’ access to experimental drugs when necessary, if the drug company agrees to it. So, rushing FDA approval for ZMapp or other Ebola drugs is not necessary and we can all feel good that the two patients seem to be doing well so far.
It is discouraging to see so many journalists and “talking heads” missing the point: we don’t know yet if ZMapp, or any other Ebola drugs in development, will save lives or cost lives. We don’t know if some of these drugs might work on patients at an early stage of the disease but harm them at a later stage. Science can eventually tell us, and this epidemic may be a good time to test experimental drugs, but science takes time. It makes sense to give patients an informed choice to face the risks of an experimental drug, if that is possible, but that doesn’t mean that it is ethical to distribute an unproven drug to everyone.
Urgent situations show us how important good science is, but good science takes time. AIDS activists have learned those lessons and are now recommending FDA be cautious before approving unproven new drugs: "AIDS Activist Takes Up New Fight: Defending FDA," AP, August 11, 2014.
Meanwhile, let’s celebrate the efforts of scientists to cure Ebola and use the teachable moment to explain why research is necessary and why it is important to do it well.