Why Doctors Don’t Know (and what to do)

*Note: I’m going to use the words “doctor” and “medical student” in this post because that’s how I was trained. However, the same information will largely apply to all providers.*

Image by benzoix on Freepik

For this post, I thought I’d share a discussion I had with my partner this month about an ad we kept seeing on our Roku channel. (We’ve been watching Bones reruns. #notanad)

The advertisement features a woman discussing a possible patient experience with hidradenitis suppurativa (HS) and promotes an “awareness” website that is actually run by Novartis who makes a medication which may treat HS (see last paragraph for more info).

The woman in the ad says she had painful bumps under her arms that prevented her from wearing a seat belt tolerably. She says that doctors didn’t know what these bumps were for 7 years.

At that point, my partner turns to me and asks—how could they not know? How could she need the “right” dermatologist?

My first thought was that they probably did know. This must be a marketing ploy. After all, I had seen several patients with the condition in my medical school training, and I wasn’t a dermatologist.

But I remembered that the patients I had seen were pre-selected for me—my only exposure to the condition had been through surgeons and wound care specialists at a large, academic medical center. These were the only people treating this condition at such an advanced stage in the region.

Some research suggests average time to diagnosis is 7 to 10 years, though that seems to based on European data. My experience with the condition may not have been typical.

This illustrates a thinking bias that is common in doctors—the more I see something, the more common it is. However, this line of thinking is flawed because no one’s training is perfectly representative of the whole population. Also, the person in front of you might be the exceptional case and not the usual one.

The main way doctors try to combat this is by studying diseases. However, there are thousands of diseases that affect humans—the running estimate right now is ~7000—and many of them rare.

Since its unlikely that any every doctor can memorize all of these diseases, including their symptoms, diagnosis, pathology, and treatments, and remember that information throughout their career including updating themselves with research advancements—most medical students don’t try to memorize every possible disease.

How do they choose which ones to focus on? Often, they rely on sorting diseases into a matrix that looks something like this.

Conditions are ordered from least severe on the left (like a sprained ankle) to most deadly on the right (brain aneurysm). They are also ordered from rare on the bottom (mad cow disease, foreign accent syndrome) to common toward the top (strep throat, heart attack). Most doctors focus on learning conditions that fall in the top right first, then the top left, then bottom right, then bottom left (if it falls within their specialty).

Diseases like hypertension (high blood pressure) can be deadly, and the are very common, so they are studied by everyone. However, diseases like HS that fall into the “everything else” bucket won’t make the study list of every medical student.

That’s not to say that no one can help people with rarer diseases! Some estimates suggest that 10% of people in the US experience a rare disease. Not unlike the woman in the ad, it takes a lot of persistence to find the right doctor—that is, a doctor with experience in both diagnosing and treating the condition.

If you or your loved one have symptoms that aren’t being diagnosed or treated in the way you deserve, please reach out. I can help you find the right specialist, decide which diagnostic tests are worth repeating, and learn more about available diagnostic and treatment options.

A little more about hidradenitis suppurativa and Novartis

First, I would generally advise caution when reading information about a disease from a for-profit company’s website. Instead, try this trusted government-sponsored resource. To connect with others who have the condition, perhaps try Hope for HS, HS Connect, or the international organization.

Second, Novartis has recently sponsored clinical trials to investigate its medication, Cosentyx, in the treatment of hidroadenitits suppurative. (The medication seems to reduce pain and reduce the number of disease flares which is great news, in my opinion, for a condition with limited effective treatments.) The company is hoping to receive FDA-approval for this new indication which will financially benefit them. For the drug company, it makes sense that they want more people and physicians to be aware of this disease and consider using their medication. However, the full results of these trials have not been published yet, so I can’t evaluate it fully, and they can’t advertise directly by saying the drug treats the disease in the way most medical commercials are structured.