Two weeks ago, I was watching the late-night news when I heard about the outbreak of fungal meningitis among people who had recently had steroidal injections in their spines for back pain. As a health journalist, I always pay attention to these stories. I have even fallen victim to the occupational hazard of hypochondria triggered by news articles and studies.
But this was different. This was personal.
I had taken a course of three steroidal spinal injections over the summer, the last one in July. I first heard the news of the meningitis risk late at night, long after my doctor’s office was closed. There would be no answers to be had until 8 a.m.
I was terrified.
Meningitis is the swelling of the protective membranes that cover the brain and spinal cord, usually caused by a viral or bacterial infection. Fungal meningitis, usually caused by the spread of a fungus through blood to the spinal cord, is a more rare form of the condition.
The federal Centers for Disease Control and Prevention reports that 14,000 individuals in 24 states were exposed to tainted injections manufactured by the New England Compounding Center in Framingham, Mass. Methylprednisolone acetate steroidal injections there became infected with the fungus that is causing the meningitis outbreak. Most infections can be traced to back pain injections, but the CDC is reporting that two cases were caused by injections in joints. The CDC estimates that the last of the injections were probably given in July, and that, by now, nearly 97 percent of the people who may have been exposed have been contacted for further testing. As this article was being published, 21 people had died and 271 people had been sickened by the injections. Laboratory tests have confirmed cases in 16 states, including Indiana, New Hampshire, New Jersey, New York, Ohio, Tennessee, and Michigan, where I live.
How I Got Here
There is something about sitting up all night, waiting to call your doctor to find out if you have fungal meningitis, that makes you more than a little anxious. That night, after reviewing a litany of possible symptoms — fever, blinding headaches, nausea and stiffness of the back and neck, along with dizziness, confusion and sensitivity to bright lights — my imagination went into overdrive. Not only did I worry that I was going to die from this, I was kicking myself for becoming exposed to an unseen risk.
(MORE: Spinal Stenosis: A Painful and Frequently Misdiagnosed Condition)
The National Institutes of Health projects that 80 percent of adults will have some form of chronic back pain in their lives, with symptoms most likely beginning to occur between the ages of 30 and 50. Chronic back pain is the most common reason that people miss work, costing the economy more than $100 billion every year.
I had long suffered a little back stiffness when I sat for too long. But in July 2011, my body forced me to start paying attention. Suddenly, I needed to hunch over shopping carts, and to sit on a bar stool to cook a meal. When I walked, I leaned forward like a skier. I was 54, but moved like someone 104.
An MRI revealed that I had one bulging disc, one herniated disc and some congenital stenosis (narrowing) of the spine, along with arthritis that had worsened with age. My daily routines didn't help. As a writer, I spent hours sitting at my desk. Carrying extra weight and not getting enough exercise only made it worse. I was managing to remain upright with weekly visits to the chiropractor, therapeutic massage, acupuncture, and thrice-weekly physical therapy sessions, but then a bout of sciatica left me hardly able to walk or stand. I needed to do more.
Ironically, the risks of spinal surgery, with no guarantee that it would improve my quality of life, and my fear of post surgery infection, led me to consider steroidal injections. Many insurance companies cover most of the cost of the injections, which run about $600 per vial. According to a study in the medical journal Spine, the injections are most effective for people just like me, with a herniated disc and pain from sciatica.
Like many who suffer from back pain, I saw the spinal injections as a Hail Mary pass that could deliver relief without my having to go under the knife. As is typical, I had a series of three injections over the course of two months. Each was like a little miracle for as long as it lasted. The first gave me absolute relief for two weeks — no bent-over walk, no need for pain meds. Then, gradually, I felt myself stiffen up again.
After the relative success of the first injection, I was almost giddy for the second. It improved on the first, and in July of this year, before a grueling month of travel, I had my third. It didn’t deliver the immediate relief that the two others had, but its relief did kick in about two weeks later.
Now I just needed to find out if I'd dodged fungal meningitis.
Vulnerable System, Vulnerable Patients
Ten hours of agonized waiting finally wound down. That morning, the network news shows all told the same frightening story. I knew I could be one of the dots on the CDC's evolving map of people who had been exposed. I started calling my doctor's office at 8 a.m. and finally got through to someone at 8:30. The receptionist, who had clearly been guided through what to say, told me, "We don’t buy our meds from that resource."
“Are you sure?” I asked, having worried now for so long that I couldn't believe so quickly that I had dodged the bullet.
The receptionist reassured me I was safe, but I couldn’t help but wonder what I could have done differently. What could I have asked or read before the procedures? What should I have known?
A week ago, I spoke to Dr. Dean Sienko, director of the Ingham County (Mich.) Health Department, acting medical director of the Michigan Department of Community Health, and founding associate dean for prevention and public health at the Michigan State University College of Human Medicine. Sienko has long been one of my go-to sources for public-health stories, everything from flu shots to HIV infection. He reviewed the fungal meningitis story for me, discussed where cases had developed in Michigan, and detailed what the CDC and FDA are doing.
But I still wanted to know: “What could I have done differently?"
“Nothing,” he said.
I try hard not to be an alarmist, but for me, this was a sitting-duck moment. It reminded me how much we take safety for granted, until we can’t. A bag of spinach, a meal at our favorite restaurant, a new prescription, a vital procedure — they're all safe, until they're not. And then they are again. For the consumer, it's the luck of the draw.
The full story of what went wrong at the pharmaceutical manufacturer, or whether FDA inspectors did their job, is still unfolding. Right now I am deeply saddened for the 21 people just like me who went looking for relief for their chronic back pain and died. I'm worried for all those who have gotten sick. But I'm also grateful that for every filled prescription, and every completed medical procedure, things work the way they are supposed to, most of the time. The scares and the sleepless nights are few and far between because we do have reliable systems in place.
I like it better when I am reporting a story, instead of being a part of it. I don’t like being a data point on a map. The experience points out what a delicate system of checks and balances we all rely on.
For CDC updates on the fungal meningitis outbreak, click here. To see the CDC's map of health facilities that received tainted injections, click here. The FDA's full list of lot numbers of infected medications from NECC is here. Patients can also call the FDA's Drug Information Line at 855-543-3784. Press * to hear the most recent information regarding the recall and speak directly to a pharmacist.
Andrea King Collier is a multimedia journalist and lead author of The Black Woman’s Guide to Black Men’s Health.