By CHUNG, ZINK, BARR

At a January event on “The Future of Baseball” organized by the Sports and Society Program at NYU’s School of Professional Studies, Yankees executive Jean Afterman spoke to the superiority of baseball over football by noting that “at least our athletes don’t have to worry about their heads after they’re done.”  It was an innocuous statement but one that points to a growing assumption that sports concussion is both (a) prevalent and (b) a debilitating disease to be feared.

But is it true that sports concussions are the public health scourge of our time?  Media coverage would make it seem so, with countless stories dedicated to professional athletes suffering through pain and dementia, youthful athletes retiring for fear of brain injury, and billion dollar lawsuits against the NFL.

A review of media reports highlights that the general public doesn’t know what it’s afraid of.  While concussion is generally understood to refer to mild traumatic brain injury (mTBI), a blow to the head resulting in neurocognitive effects, the public seems more fixated on chronic traumatic encephalopathy (CTE), a neurodegenerative disease that still has no clear pathological link with mTBIs.  Yet, Will Smith starred in a movie about CTE titled – you guessed it – Concussion.

This confusion isn’t simply a media creation – doctors themselves can’t agree on key elements of concussion and related effects.  For instance, even as stories of children dying on the football field due to blows to the head permeate, the supposed underlying condition of second impact syndrome (SIS) is dismissed by many medical experts as a catchy term searching for a real diagnosis.  And depending on your medical specialty, treatment orthodoxy for post-concussion syndrome (PCS) can vacillate wildly, with some experts advocating total rest and removal from both school and play for as long as necessary, and others arguing that rest exacerbates symptoms.

Given such uncertainties and how little we know about the true magnitude of harm from head impacts, why is so much ink, research and money being poured into concussion?

The truth is that both researchers and those that fund researchers are human and prone to influence by news and narrative rather than social and health needs.  Take HIV/AIDS.  Stigmatized as the “gay disease”, it was only after Magic Johnson publicly announced his affliction that awareness and funding for the condition escalated.  Eventually, support for HIV/AIDS research culminated in the NIH setting aside 10% of its budget for the disease – a practice that persisted from the early 1990s until 2015, well after AIDS-related deaths began to fall.

The rise of single-disease interest groups since the 1980s and 1990s has led to policymaking and funding based on advocacy and visibility rather than public health needs.  Cut to the “concussion crisis”. Rather than rationally and holistically evaluating the risks of concussion in the context of other diseases, millions upon millions of dollars began pouring into concussion-related research based on fear, and researchers – naturally – started competing for it. This trend shows no signs of stopping even as no cohesive research direction has emerged.

Single-disease advocacy skews medical research and funding towards causes that are relatable rather than most harmful to society. What’s worse – advocacy group agendas aren’t just being set by affected patients and concerned citizens – they’re being co-opted by industry. A recent New England Journal of Medicine article revealed nearly 9 in 10 of patient advocacy groups receive money from drug and medical-device companies – lots of money, though precisely how much is unclear due to hazy disclosure practices.

These haphazard methods for funding public health research also lead to inequitable funding, marginalizing those not as organized or as visible. Take for instance the disparity in funding between ALS and sickle cell disease (SCD).  ALS affects mostly Caucasians, SCD mostly African-Americans.  ALS affects between 12,000 and 30,000 Americans, SCD affects between 70,000 and 100,000 Americans.  ALS sufferers, on average, live longer than those with SCD.  Yet in 2016, the NIH provided $52 million to ALS research and $78 million to SCD research.  Even averaging conservatively, that’s hundreds if not thousands more per patient for ALS.  And that’s only NIH funding – single-disease philanthropic efforts exacerbate differences with campaigns such as the ice-bucket challenge for ALS raising millions and capturing the cultural zeitgeist in a way that SCD, and its primarily African-American association, never has.

How did we get here?  As noted by Rachel Kahn Best at the University of Michigan, “[d]isease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking”.

Right now, concussion is the darling/boogeyman of the most tenacious advocacy group of all – concerned parents.  Their cultural influence risks disproportionately skewing funding from other, more pressing, issues to concussion research.

Not convinced that concussions might primarily be a cultural issue?  Let’s contrast the crisis coverage given to concussions in North America to the relative paucity emanating from other regions, such as Asia.

With the prevalence of contact martial arts in Asia, such as judo and taekwondo, it stands to reason that concussions should be a concern there too.  After all, judo involves people being flipped to the ground and taekwondo actually rewards kicks to the head with points.  Dr. Ryo Uchida, now of Nagoya University, showed that at least 110 children were killed due to judo practice in Japanese schools from 1983 to 2009 with a further 300 being disabled or comatose – let alone concussed.  Even so, the Japanese government has continuously weighed the benefits of expanding judo instruction by making it mandatory across middle and high schools.  As for taekwondo, the Korean martial art’s popularity also shows no sign of decline.   Yet, the hysteria over head injury appears to be relatively muted compared to North America.

Asian heads aren’t harder or more adept at absorbing impact than those of other races.  More relaxed Asian attitudes towards concussion can likely be attributed simply to cultural differences than bio-medical reasons.  Dr. Uchida himself asserts that judo itself is not dangerous but rather that coaching reform is needed to better train judo instructors to ensure safety in middle and high schools in Japan.

Is Asia being too lax about sports concussions?  Is North America’s desperate drive for medical answers premature and overwrought?  It’s hard to say but, in all likelihood, the appropriate response to the concussion crisis lies somewhere in between.

What is clear is that privilege appears to play an outsized role in how medical issues are examined, funded and researched today.  As advocacy organizations do their best to keep concussion top of mind, it’s up to policymakers and the medical community to properly contextualize concussions and their actual risks.  To do so, transparency must be brought to the top of the agenda. Funding allocations and the research decision-making process should be demystified. Consultations with advocacy groups must be publicly reported and available online.

Concussions are important and should be studied.  But the call to do so should be scientific, not cultural. Patients suffering from all diseases deserve a level playing field.

Jason Chung and Amanda Zink are researchers and attorneys at NYU School of Professional Studies Sports and Society, an interdisciplinary think tank dedicated to the study of social issues through sports
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Dr. Barr is an Associate Professor of Neurology at the NYU School of Medicine and an active investigator on the topic of sports concussion for more than 20 years.