Medical miracle: One woman’s quest for the elusive shingles vaccine
Once each week, I picked up the list on my desk and called all the phone numbers.
“Do you have it in?” I asked, followed by, “Do you know when you expect to?” and finally, “I should just keep calling?”
Then, because I am either a sucker or an optimist, I went on a few websites described as “vaccine trackers”, even though they hadn’t actually found me a vaccine in the months since I began looking.
I was searching for Shingrix, the vaccine approved 14 months ago to prevent shingles, a potentially painful and debilitating disease that sounds like something from a horror movie – a blistering rash caused by dormant chickenpox virus reactivating decades after the original infection.
This new vaccine is far more effective than anything that came before. The increased incidence and awareness of the disease, and new guidance that lowers the recommended age for vaccination to 50, has led to a national shortage — and this has meant that 50-somethings like me are searching for it with a passion they haven’t felt since trying to locate a Tickle Me Elmo for their kids decades ago.
“For the over-50 set, Shingrix can be harder to come by than a ticket to ‘Hamilton’ or a Paul McCartney concert,” an article in WebMD declared late last year, a statement that didn’t make me feel either better or in the least bit trendy.
I was determined to get the new vaccine because I was haunted by the suffering of an elderly uncle in the grip of shingles about a year ago. The trigger for shingles is unknown, but it appears to be more common in those who are frail, immunocompromised, older and stressed. My uncle was likely all of these near the end of 2017 — coincidentally just as the Food and Drug Administration gave GlaxoSmithKline approval for Shingrix — when he developed a blistering rash. That was followed by postherpetic neuralgia, which is excruciating nerve pain. The poor man was reduced to wailing so loudly that he was nearly asked to leave his assisted-living home.
Thus began my determined search to protect myself from the same.
While the likelihood of shingles increases as you age, it does not only occur in the very old.
“I deduced it was probably shingles as soon as I felt it,” says Dr. Barron Lerner, 58, a primary care physician at New York University Langone Health in Manhattan, who developed the condition this summer. His own first symptom was “a distinctive kind of pain, a numbing, aching pain”, which in his case was in his back, though shingles can appear anywhere on the body. His pain was followed by the same rash my uncle had – distinctive in that it only appears on one side of the body – and then by the nerve pain, though in his case it was “nothing like the kidney stones I’ve had, but it was also worse in that it lasted for weeks.” He was prescribed opioids, but says they didn’t really work.
While there had been a vaccine, called Zostavax, available since 2006, it was only 51 percent effective and only recommended for people over the age of 60. The new vaccine, Shingrix, in contrast, is shown to be more than 90 percent effective and was recommended for starting at age 50. Its side effects in trials were minimal — sore arm, muscle aches, a day or two of feeling blah — which seemed acceptable against the risk factors of shingles, which include vision loss, hearing problems and encephalitis, depending where in the body the virus emerges. (The vaccine does not include any live virus, so it cannot cause either shingles or chickenpox.)
The major downside of Shingrix is that it requires some attention — a second follow-up injection two to six months after the first. And it is not cheap — about $160 for each of the two doses, though that seemed to be covered by most insurance.
At my annual checkup this summer, I asked my internist whether I should get the vaccine. She agreed, but when I suggested, “Right now would be good,” she said they were not actually giving the shot at her very large multispecialty practice. “We’re advising patients to try their pharmacy,” she said.
Which is how I became one of the many who could not find the vaccine.
“There has been unprecedented demand for SHINGRIX from patients and healthcare professionals and, as a result, demand for the vaccine currently exceeds supply,” GlaxoSmithKline said in the fact sheet it gives the press in response to questions. It also notes that 7 million doses have been shipped in the first year, and that rate is expected to increase substantially in the next year or two. Until then, the company says, contact your pharmacy.
I did. Of the dozen pharmacies on my list, only one kept a waiting list and promised to call when it was my turn. I added my name in October and have not heard from the pharmacy since. The rest respond to my regular calls with some version of: “We don’t have any at this time, try back later.”
From what I have learned from these calls, the vaccine arrives once or twice a month in doses of 10, with no warning and no pattern. “Could be any day of the week, and it’s usually gone within 48 hours,” one tech told me.
The chains themselves — Walgreens, CVS, Rite Aid — refused to comment on how the doses are doled out. “We are advising customers to contact their local pharmacy to verify availability of Shingrix,” said one typical response, from Allison Mack, a communications manager at Walgreens’ corporate office. “We’re working closely with our distributor and field teams to help meet demand with the supply available. Any further questions about Shingrix availability should be directed to the manufacturer.” (Which leads us back to the manufacturer’s fact sheet above.)
Dr. Lerner is also sending patients to the pharmacy. His own experience with shingles, combined with the greater efficacy of the new vaccine, means “I am talking about it more with patients,” he says. But like my own doctor, “We are not giving it here in the office” he says. Some of his patients have “been persistent, like you have, and they have gotten their two doses,” he said. But “I get the feeling that most call once or twice and then just give up.”
And persistence is just one of the ways that ensure that some patients get this new protection against the disease. That became clear this past weekend when I happened to walk into my local Walgreen’s for something else entirely. As I paid, I asked “You don’t happen to have Shingrix in stock?”
“Wait here,” the counter clerk said.
Soon I had filled out the paperwork and was readying to roll up my sleeve when the pharmacist said that my insurer only covered the cost if Shingrix was given in a doctor’s office. But my doctor’s office doesn’t give it.
Next I was on the phone with a nice man at the customer service line on my insurance card. “Yes, we hear this a lot,” he said. “I agree with you, it doesn’t make sense,” he added, “but that is the rule.”
I paid for the shot.
As she jabbed my arm, the pharmacist and I discussed how that Medicare Part D covers the vaccine, but Medicare Part B does not, and Medicaid does only sometimes. Private insurers vary widely, she said, estimating that 75 percent of her customers pay out of pocket.
As she applied a bright-red Walgreens bandage, we talked about medical and economic privilege, and of a system designed so that the people who need care the most manage to get it the least.
And as I headed to my car, I carried a receipt for the $160 I’d paid and a piece of paper with a date exactly two months out. That’s the first day I will be eligible to get the second in the two-shot series —which I need to get within four more months.
“Now that I’ve had the first, can I reserve the second somehow, so that I can be sure to have it on time?” I had asked when this was explained to me.
“Sorry, no,” she’d answered. “You’ll have to call and check.”
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