First came several hours of blackest end-of-vacation stress. Not over anything truly serious, just garden-variety panic, as in, “We forgot the wallet and we’re late for the plane but just took the wrong exit for the airport.” It brewed inside me for hours amid my self-recriminations on the endless flight home.
Then, as we were finally filing off the plane, I felt a prolonged itchiness on the left side of my torso. Discreetly peeking under my shirt, I found a cluster of red pinpoints, sprinkled in a strip near my navel. “Oh, hell, not this too,” I thought. “Maybe it’s shingles from all that stress. I knew I should have gotten that shot.”
Shingles, in case you’ve missed all the vaccine ads on TV and in drugstores lately, is an often excruciating, blistery rash caused by the reactivation of the chicken pox virus that lies long dormant near your spine after your childhood chicken pox. It hits about a million Americans a year. The TV ads have a horror-movie ring, warning that the virus “may already be inside you.” A tough-looking firefighter tells you it was the worst burning sensation he ever encountered, and “it is bad.”
Ha. I scoff at those ads. I’m not scared of shingles. Sure, I’ve heard the pain compared to third-degree burns and medieval torture, and very rare complications can cause blindness or affect the brain. But it generally lasts no more than several weeks, and that’s just not a frightening enough prospect to energize me to get an extra vaccine. Especially one that can cost me $185 even at a Costco pharmacy (which I know because I just called.)
No, the reason my heart dropped when I saw my rash — and the reason I am now going to pay out of pocket for the vaccine because my health insurance covers it only for those over 60 — is an affliction even less familiar to most people than shingles. It is called postherpetic neuralgia. Think of it as “Extended Release” shingles. Or as the closest thing to the trials of Job for an unlucky few.
We have a family friend whose epic case poisoned his life for years, but at my request, Dr. Anne Louise Oaklander, a Massachusetts General Hospital neuropathologist and researcher, refreshed my fear. Her postherpetic neuralgia patients, she said, “tell me that every day is spoiled, and that they are in chronic pain,” sometimes for years — pain so bad that it can lead to depression and job loss and isolation. In rare cases, even suicide.
“Shingles is no fun,” she said, and its rare complications can be serious, “but it passes,” and “the reason to get the vaccine is to avoid postherpetic neuralgia,” which affects 10 to 20 percent of people 60 and above who get shingles. Rates rise rapidly with age.
On the fence
At age 52, I’ve been on the fence for a while about getting Zostavax, the shingles vaccine. Though the FDA approved it in 2006 for virtually everyone over 50, Zostavax has been slow to catch on, hindered by supply shortages and other challenges. More on that later. But Merck, which makes Zostavax, says the pace is picking up.
“We shipped a lot more vaccine in 2012 than in 2011, almost double the amount,” said Dr. Eddy Bresnitz, the executive medical director for adult vaccines at Merck.
Should you, too, get on that bandwagon? The answer is a deeply personal decision — ideally, in consultation with your doctor, of course. It’s even more personal than most vaccine decisions, because shingles is not generally infectious, so you don’t have to factor in good citizenship.
Rather, your choice may hinge more than anything else on your age, your money, and what you fear, or don’t.
“One of the things that’s really unique about this vaccine is that it prevents pain,” said Dr. Rafael Harpaz, a CDC epidemiologist who has worked on shingles for nearly a decade. And attitudes on pain vary. “Some people wouldn’t care that much if they had mild shingles and they wouldn’t pay anything to avoid it,” he said, “but, like you, would be scared to death about getting something that would be life-shattering.”
Running the numbers
An American’s average lifetime risk of getting shingles is somewhere around 30 percent, Dr. Harpaz said. “But the most important thing to know about the epidemiology is how it’s related to age.”
Though everyone who’s had chicken pox (the actual illness, not the vaccine) can get shingles, “the rates start to take off at 50. But a person who’s 50 is at much less risk than someone who’s 60, who’s at much less risk than someone who’s 70, and so forth.” And the older the patient, the more severe the symptoms tend to be.
Age affects the risk for postherpetic neuralgia as well, Dr. Oaklander said. By age 70, she said, about half of shingles patients will have post-herpetic neuralgia for at least a year. “Shingles becomes a medical emergency,” she said.
Vaccine as defense
So how well does the vaccine work? Dr. Harpaz says the overall figure is that the vaccine works to prevent 51% of all shingles cases. But it works even better at preventing the really severe cases likeliest to lead to postherpetic neuralgia.
“The bottom line is, if you look at those life-shattering cases, the vaccine seems to prevent like 75 to 80 percent of those, whereas it prevents 51% of all shingles,” he said.
Good news, right? And Dr. Oaklander offers more reason to get the vaccine sooner rather than later: Well-done research, she said, has found that the vaccine is even more effective between age 50 and 60, reducing the risk of shingles by 70 percent in people in their fifties.
But nothing can be that simple, right? Because there’s another factor we have to work in: How long the vaccine lasts. And the vaccine is too new for optimal timing to be clear.
A recently completed study followed up on people in the vaccine’s original clinical trial to see whether their protection wore off after ten years, Dr. Harpaz said, and preliminary results suggest that may be the case.
So keep in mind, he said, that a vaccine you get in your fifties may be wearing off as your risk rises.
Boomer coverage limbo
I’ll get to insurance coverage, but first, just a bit of back-story. The FDA did approve the Zostavax vaccine for people above 50, but the CDC recommends it only for an older cohort, above 60.
Why? Dr. Harpaz explains that when the CDC was considering the issue, the vaccine was having persistent supply problems, and the CDC worried that if it lowered the cut-off age, the younger boomers’ demand would siphon away vaccines from the older people who needed them most.
These days, supply has been ample for more than a year now, and the CDC may lower its cut-off age in the future. But for now, while virtually all insurers cover Zostavax for age 60 and above, people in their fifties remain in a bit of limbo.
Among people in their fifties who have private insurance, about one-half would be covered for Zostavax, estimated Dr. Bresnitz of Merck. Here in Massachusetts, I asked two major insurers, Blue Cross/Blue Shield and Tufts Health Plan, and both go by the CDC, covering the vaccine only for those over 60.
Medicare, the public insurance for those over 65, covers Zostavax as well, but in its ‘part D’ prescription benefit, so patients may find that the process can be cumbersome and co-pays required. The insurance side of the vaccine, Dr. Oaklander summed up, can be “a bit of a shlep.”
Combine that insurance shlep with high retail prices and the former supply problems, and you can understand the rather modest Zostavax numbers thus far: As of 2011, only about 16 percent of Americans over 60 had gotten the shingles vaccine.
Quantifying your fear
Back to my rash as I was getting off the plane: I entered a state of high vigilance. I knew that if you do get shingles, you need to get it treated promptly. Quick anti-viral drugs can cut the risk of post-herpetic neuralgia in half, Dr. Oaklander said.
But was this even shingles? I turned to Dr. Google — but mainly the CDC, of course — and focused in on the descriptions. Shingles occurs most commonly on the torso, but only on one side of the torso. My spots were only on my left side. So imagine my joy the next day when I found an itchy red spot on my right wrist. “Thank goodness,” I said, “it may just be plane-borne bed-bugs!”
That clinched it for me. When you are so scared of something that the prospect of bedbugs is a joyful alternative, you need to do everything you can to avoid that something. But I can imagine other people’s calculations coming out very differently: If you have lower risk and less fear, if you’d rather wait until more is known, if money is tighter.
Thankfully, our family finances are solid these days. And the vaccines are easy to find; Dr. Bresnitz says “close to 50 percent of our vaccine is given in pharmacies.” So if our doctors approve, we’ll just put “shingles vaccine” on the Costco list next to the paper towels.
It feels like a funny financial tradeoff. Instead of, say, a splurge of an evening of dinner and a play, we’ll lower our risk of prolonged agony. Not exactly a fun way to spend money. But it makes sense in a grown-up, bad-things-really-happen way. And at least my next bout of stress may carry less of a risk of life-shattering complications.
Readers, how are you thinking about this decision? If you decided to get the vaccine, was it a hassle? For further background:
Postscript to friends and neighbors: It does not appear to have been bedbugs either — unless it was perhaps one tired bug that quickly died off.