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We have a definition problem in healthcare

Writer: James W. KimJames W. Kim

Advances in healthcare research and technology are messing with traditional definitions of diseases used in practice. This is a ticking time bomb.


It's a problem that has bugged me for a better part of a decade, and it started in a hotel lounge during a medical device trade show somewhere in Southeast Asia (I think Kuala Lumpur). It was a cordial evening with drinks in the lounge with industry experts and physicians, and I was as green as I was eager to absorb all sorts of knowledge. The conversation, as they do when you corral these types, moved to major health issues. The topic of the night? Tuberculosis.


"...you stick a needle in just the right place and take an aspiration sample, and there is a good chance you'll find the (tuberculosis) bug," says an infectious disease expert physician.


It's true. The WHO estimates that one-quarter to one-third of the world's population is harboring Mycobacterium tuberculosis in their bodies.


"Then what is the disease tuberculosis? Is it not disease if there are no symptoms?", I asked. "Even if you have the bug in you?!"


WTF? (At least that's what I thought back then in blissfully young ignorance)


That night had opened my eyes to what turned out to be a whole bunch of definition incongruencies that I came across through my career, especially for the diseases that were longer in the tooth. And the more I converse with especially practicing physicians the more I notice there is a gap in what we respectively mean when mentioning certain diseases.


"Modern" communicable diseases are conveniently classified and named to distinguish between the collective set of symptoms (the disease) and the causative pathogen (bacteria or viruses). COVID-19 is the disease with the associated laundry list of symptoms, SARS-CoV-2 is the virus that is responsible for it. AIDS is the disease brought forth after the pathogen HIV does enough damage to the immune system.


Older diseases, on the other hand, are not afforded this distinguishment and cause a whole lot of headache because the pathogens which were only discovered in the past 150-ish years of human history are frequently named after the disease which has assaulted humanity for a long while: Tuberculosis (Mycobacterium tuberculosis; MTB), gonorrhea (Neisseria gonorrhoeae), chlamyida (Chlamydia trachomatis), influenza (Influenza virus), etc.


So, for example, when we treat gonorrhea, we treat with antibiotics to get rid of the bacteria and are cured when the bacteria is gone along with the symptoms. There's the problem. Because of how the healthcare system is set up, this typically works only when symptoms show up in the first place. (How many of you go to the doctor when you're "feeling" fine?) But many men and most women with gonorrhea are asymptomatic (CDC). Although by definition the disease gonorrhea is infection by the bacteria Neisseria gonorrhoeae, if you don't know if you are infected because no symptoms show and thus never go to the doctor, do you really have the disease?


Things get more confusing with tuberculosis - latent tuberculosis, to be more specific. As I mentioned, there are a whole lot of people harboring MTB in their bodies and it's known that roughly 10% of those will eventually develop the disease tuberculosis. That's about 250 million people - 76% of the US population or almost 5 times the population of South Korea - time bombs just waiting to burst into pandemonium.


The CDC estimates it costs $19,000 USD for normal tuberculosis treatment along with an additional $30,000 USD in indirect productivity loss owing to the arduous 6 to 9-month treatment. But it gets better. Multidrug-resistant (MDR) and Extensively Drug-Resistant (XDR) MTB strains are becoming more and more prevalent. WHO estimated 490,000 new cases of MDR tuberculosis worldwide in 2016. The cost to treat MDR tuberculosis? A combined $393,000 USD dent in the wallet across a 20 to 26 month treatment period. Yeah, it turns out cancer isn't the only illness that can break the bank.


But for gonorrhea or tuberculosis (and countless other infectious diseases), it's almost never "disease" if one doesn't have symptoms. Try finding an insurer - public or private - that will say otherwise. COVID-19 isn't any different. I've already waxed poetic about the impossible incompetence everywhere in not even trying to contain asymptomatic SARS-CoV-2 transmission.


Look. We have the technology and are very competent at using it. Just look at how fast the SARS-CoV-2 diagnostic kits were developed. Without even trying, it could cost less than $200 per test (all inclusive, current market prices) to screen for each of these infectious diseases that are so often silent. Heck, the out-of-pocket laboratory charge (because of course, insurance doesn't cover it) for a latent tuberculosis test (interferon gamma release assay) in my area runs about $74 USD and about $55 USD in Japan. Simple math says that screening the entire population is more cost-effective than waiting for an infection to fester and cost a literal shit-ton of money to cure all those patients, or worse, let them die. And we are playing with fire if we think that MTB will never evolve to be contagious without symptoms as it currently is. Do we really want to end up dealing with something named "ultra" gonorrhea?


I acknowledge it is a complicated issue. The healthcare community has a hard time nailing down definitions of many non-communicable diseases as well including dementia, lupus, autism (spectrum disorder), just to name a few. The definitions of these and more diseases are in a state of constant flux as we continue to know more and more about how these diseases work and new biomarkers are elucidated. My point is that when the means to diagnose the disease are readily available and the treatment is relatively clear, why are we not casting a wider net with more encompassing definitions?


The obvious first question would be regarding who would pay for this type of screening program? Sure as heck not the same parties that would pay up to treat an active infection. Different models, different expectations. It ends up being a policy issue, because the market has no business and no interest in performing acts that are unprofitable.


Policy is born of popular demand. And popular demand for these specialized issues can only start from the professional groups that oversee and lead discussion over these issues. Revising infectious "disease" definitions to encompass and equal de facto infection status, and practicing medicine reflecting such would be a small but significant start in moving in the right direction. Because a move like that would all of a sudden enable highlighting of the frightening scale of the problem. Because we now have the technology to empirically and affordably prove infection status. Because academic correctness should never come before human lives.


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