This is the story of the health of our city, seen from both a great distance and up-close and personal.
Despite our distraction from the issue because of hurricanes and elections, the fungal meningitis outbreak continues. Hundreds of individuals are suffering or have died because of exposure to tainted steroids from the New England Compounding Center (NECC) in Massachusetts.
Since Sandy supplanted this post’s original publication, the outbreak has expanded, with Michigan in particular showing a dramatic increase in reported cases. This issue continues to plague Maryland and the other 18 states that have reported cases. Maryland remains among the most affected states, with 23 cases and one death reported as of November 7th, 2012. By now, clinics and hospitals that have received (and now removed or destroyed) contaminated drugs are located throughout the state – in Edgewood, Towson, Baltimore, Berlin, Abingdon, and Bel Air.
There are a great number of fingers that can be pointed, mistakes that could have been avoided and, doubtless, lawsuits that have and will be brought stemming from this event. However, it strikes me that there are valuable and proactive ways to approach the situation while learning the many lessons presented by this tragedy.
Let’s separate them into categories, shall we?
First, government regulation.
This topic is a rabbit hole, and it would probably be best for all of us if we simply acknowledge regulation as essential, flawed, and in need of progressive change. Despite that, I would like to take one or two more steps into the abyss. The push to cut government costs has value – “Government” is an expensive thing, historically fraught with various degrees of inefficiency. Reducing that cost is certainly worthwhile. Despite this, the cost of doing so can be seen in circumstances such as this. Food and Drug Administration (FDA) regulators have been a target for budget hawks over the years, which constrains the resources necessary to effectively oversee and enforce drug producers.
This is not to say that the FDA was not trying. According to Dr. Michael Carome in a recent CNN opinion piece, they flagged the NECC as early as 2006 because of practices there that were outside the scope of their practice. Compounding pharmacies are intended to serve local populations by creating tailored versions of medications that are suitable for specific individuals – excluding a non-therapeutic ingredient such as a flavoring for a child with an allergy to it, for instance. They are not meant to act as pharmaceutical manufacturers with broad distribution, as the NECC was doing. Dr. Carome points out that by not following up on its 2006 concerns about the NECC, the FDA missed an opportunity to, at the very least, limit the damage of this outbreak to a much smaller population, and at best prevent it altogether.
The value of government regulation is in the often invisible functioning of our society – food that is safe to eat, roads and bridges that can be driven on in vehicles free from dangerous flaws policed by trained police beholden to the citizenry rather than a private security firm, and drugs that are safe and effective. Clearly some parts of this machinery work better than others. The relationship between private interests and public good fuels and complicates it’s smooth operation.
See? Rabbit hole in a slippery slope. Regulation: essential yet flawed and in need of a good shake.
Second, fear and loathing.
When a critical component of our infrastructure fails us, there our reaction is often to fear and avoid rather than understand. The danger of developing an infectious disease from pharmaceuticals is extremely minute, and not a true area for concern despite this outbreak. When presented with scandalous data, we often assign a negative stereotype to a service or product vastly out of proportion with the true danger involved. Dan Ariely, author of Predictably Irrational points out in his book and papers that we are remarkably bad at making logical decisions, relying instead on emotional responses. Steroid injections at this moment are probably far safer than they have ever been, and those suffering pain and disability should seek proper treatment without fear of fungal infection. More on this in the last paragraph, stay tuned.
Third, manufacturing and distribution.
Although this is far too small a space to address this properly, and will instead be a topic in future, the NECC case should make us all cognizant of the fact that many materials – drugs, food, fuel, clothing, building materials, and so forth, come from somewhere else, and that we lose a degree of autonomy for every step in the distribution chain.
Fourth, ownership of treatment.
The patients and their families across Maryland and the country who are suffering from the contaminated drugs made by NECC are not at fault for their condition. Neither, for the most part, are their treatment providers. Both patient and provider, however, have a responsibility to engage in treatment with full awareness, with as much information as possible. This event should not have occurred, of course, but it should remind us that we are responsible for our own treatment. Some professional acquaintances of mine in Pittsburgh at the Consumer Health Coalition developed a tool for this purpose, and I cannot recommend it strongly enough.
We must ask questions of our doctors, bring a friend or relative to help us take notes, learn about our conditions, understand our options, determine if the recommended treatment option is best for us or simply profitable for the manufacturers, and now, perhaps, find out where those treatments come from.
Next time: What do mosquitoes and poison ivy have in common?
