Like a lot of people, I don’t read books and magazines at night before I go to sleep as much as I used to. Instead, I often lie on my side with my smart phone guiltily scrolling through Facebook instead of reading The New Yorker. Most of my FB friends are science writers or scientists, so my feed is filled not so much with cat videos as health news, gravity waves, and, okay, funny videos of actual tortoises playing soccer.
So when someone posted “Wow. What a horror story. This poor man” with a link to a recent Washington Post story, I took a look. It was a gripping first-person account by a woman whose brother has a form of tuberculosis resistant to virtually every known treatment.
It so happened that I had just written a press release this week on a new diagnostic test for TB, so I knew that a third of the world’s population is infected with tuberculosis, 240 million have active TB and a million and a half die from it each year, though that number has been coming down incrementally.
Part of the problem is that TB is really difficult to diagnose accurately.
“Gary” in the Washington Post story had been repeatedly diagnosed with pneumonia and treated with antibiotics. Instead of getting well, he’d developed a strain of TB resistant to just about every antibiotic in existence. Doctors at the University of California, Los Angeles had finally diagnosed him with TB. From the piece:
Gary was tested for TB, but the results were confusing. First, we were told Gary had TB, then that he didn’t have it, then again that he did. But pneumonia and TB are treatable, so why wasn’t my brother getting better? I demanded to speak with his nurses, his doctors and the county health department.
That is when the hospital health administrator told me there was no hope.
I finished the article, but I couldn’t sleep. Hard to believe that in 2016, it’s still so difficult to diagnose TB. This was exactly the problem I had just written about that Purvesh Khatri, PhD, and his team at Stanford had solved. They had designed a blood test that could accurately diagnose TB, whether in a big city hospital or a rural village in India without so much as a refrigerator. Millions might be properly treated sooner, slowing the spread of TB.
It seemed like a fantastic breakthrough and I was pleased to help report it. But after reading about Gary, I felt the emotional impact of it. Gary’s story resonated partly because I’d been sick with a cough for three weeks and the cough was getting worse.
But it wasn’t only that. My mother had TB in the 1940s before antibiotics were available to treat it. She spent a year in a sanitarium near St. Helena, in Napa County. When she was older and had two kids, I remember asking her why she had little round scars on her back. Those, she said, were where they poked her with large needles to collapse her lung and starve the Mycobacterium tuberculosis pathogen of the oxygen it thrived on. A medical writer, she didn’t hold back on details. Slowly, gradually she had gotten better. But she lived with one collapsed lung her whole life, always the slow one on our family camping and hiking trips in the Sierra.
At 17, she had been a freshman at UC Berkeley and contracted the disease from her roommate, Jennie. They both became so ill. Jennie died of TB, my mother survived and named me after her friend.