The Public, The Media, The Epidemic, The Real Risks
Ebola has been a sweeping health concern this summer. Not since the H1N1 outbreak of 2009, where President Barack Obama declared the virus a national emergency, have we seen a health incident of such concern to Americans. Strangely enough, Ebola isn’t a disease that has the potential to be a wide-spread contagion in the United States. This is in contrast to countries like Liberia, Guinea and Sierra Leone; where there have been over eleven-hundred deaths according to recent reports.åHowever, when the news that two American health workers stationed in Liberia affiliated with the Samaritan’s Purse humanitarian organization were infected the dynamic changed. The Ebola virus headlined every local and national news network. The US media, politicians and the general public demanded something be done for our people abroad.
Stories began to circulate about some magic drug called ZMapp developed by MAPP Biopharmaceutical Inc., which is now under development as a treatment for the Ebola virus. This drug had never been tested in humans nor was there information to support its usage in humans.
As has been well documented, the two Samaritan’s Purse health workers who received this new experimental treatment survived the Ebola virus. Their improving health prompted other humanitarian workers from Spain and Britain to request ZMapp. Three additional doses were later provided to treat Liberians with the disease.
If it seems somewhat odd that and un-proven, untested drug could be used to combat this virus you should know that the FDA does allow for Expanded Access to an “investigational drug” outside of a clinical trial. This is commonly referred to as compassionate use.
Well that’s the bulk of the story but there is a larger element here about fairness, public pressure and oversight. The Samaritan’s Purse organization worked with the FDA and MAPP Biopharmaceutical to get the necessary approvals and provisions for the treatment of their aid workers. Backed by the humanitarian organizations resources, public sentiment and an inquisitive media; the government supported ZMapp for compassionate use.
Soon after the American’s were provided the treatment however an international uproar began. Were individuals infected from Western Africa not privy to the same life-saving medicine as individuals from America? This fairness dynamic is not new. There are numerous cases where American patients bring social and US media to their cause and petition pharmaceutical companies to release unproven interventions for the treatment of desperately ill patients. Pharmaceutical companies not wanting to be villainized by the American public give in to what eventually becomes a national onslaught of pressure and work with the FDA to have their drug approved for expanded access, in many cases for use by only a single patient. Fair…probably not. The message here is: if your bull horn is big enough, if you have media savvy and your case is dire enough a patient could have access to a previously unheard of investigational new drug for the first time ever, while other similarly afflicted patients languish. There is much risk in these instances for all involved and new methods of getting one’s story out create new outlets for public petitioning in the usage of such experimental drugs.
Platforms like Facebook and YouTube where “likes” can number into the hundreds of thousands garner significant attention for individuals in their quest for new treatments. There are even petitions in some state legislatures for “Right to Try” laws that actually go around the FDA and allow doctors to give patients experimental drugs without personal risk or liability for outcomes.
This whole thing puts us in a precarious situation. I don’t intend to offer solutions here as I’m sure there are physicians, ethicists and activists who could bring very meaningful recommendations to bear. I only attempt to suggest that in our compassion for some, perhaps we create inequity for others and cause still others to bang the drums for more risky efforts such as Right to Try laws. It is often the case that we cede decision-making to newscasters, politicians and Twitter instead of allowing science and ethics to lead the way.
The President when asked whether ZMapp should be fast-tracked or made available for patients outside of the United States remarked, “I think we have to let the science guide us.”