March 25, 2017
Paul E. Sax, M.D., is director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital in Boston.
I had dinner with my daughter Mimi the other evening, and was ruminating about how things have changed since I started work as an Infectious Diseases doctor around 25 years ago.
Here's an excerpt of our chat:
Me: There are way more cases of endocarditis in young people than there used to be, a complication of injecting drugs. People in their 20s and 30s with life-threatening infections, getting admitted to the hospital, needing antibiotics for weeks, sometimes surgery ... it's awful. [I didn't mean for this to sound like a cautionary speech to my 21-year-old daughter, but reading it now -- guilty as charged.]
Me: Infection of the heart valves. It's an incredibly serious problem, much more difficult to treat than HIV and HCV. Even with our best antibiotics, some people need major heart surgery -- their lives are never the same. And sometimes the infection spreads through the blood to the lungs, spine, brain. ... Some even die!
Mimi: I've never even heard of it. And we never covered it in high school, and we had a ton of drug talks in health classes. It was all HIV and hepatitis. And overdoses, of course.
Me: Trust me, it's a terrible problem.
Mimi: I bet if I asked 10 of my smartest friends, most would be like, "What?" Hey, I can't even remember what you called it, and you just told me. Here, let me check something. What's the infection called again?
Mimi [takes out her phone, does some rapid-fire tapping]: Just did a Google search. "Endocarditis and injection drug use" has 179,000 hits, "HIV and injection drug use" has 1.6 million. And most of the endocarditis ones are in medical journals. Only doctors are going to read those.
Me: How do we get the word out?
Mimi: It needs a better name. Something like Zika -- everyone can remember that.
Me: Can I steal that line?
Mimi: Provided there's proper attribution, go right ahead!
For some context, Mimi is a college junior and, while not medical school-bound, is a smart kid. (Of course she is.) Having grown up with two doctor parents, she probably has a better than average fund of medical knowledge for her age.
But the above conversation exposes a major gap in the lay public's understanding of the risks of injection drug use -- one hinted at recently in a piece on the clinical and ethical challenges of heart surgery for people with addiction.
For whatever reason, endocarditis and other invasive bacterial infections are not nearly as feared as HIV and HCV, despite the fact that the former are far more immediately life threatening and way more difficult to treat.
It's true even among those who have had endocarditis. One woman told me that the most upsetting part of her prolonged admission (complicated by cavitary lung lesions and spine infection at multiple levels) was not the days of fevers, the pain when breathing, the severe back pain from the infection, back pain that still plagues her.
It was when she found out her hepatitis C test came back positive.
Of course HIV is incurable, unlike endocarditis -- but it too is treatable with 1 or 2 pills a day, treatment that essentially eliminates the chance of getting sick from AIDS. And in the United States, rates of HIV due to injection drug use are way down despite the opiate epidemic, accounting now for only 6% of new cases.
So why do we have this strange paradox? And does endocarditis need a new, more memorable name? Suggestions welcome.
And remember, Zika is taken.
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