What My Covid-19 Vaccine Saga Taught Me About the U.S. Health Care SystemJune 7, 2021
For most people, that first coronavirus shot brings a profound sense of relief, a deep exhalation of a year’s worth of anxiety and isolation.
For me that blessed relief was short-lived. I had a rare allergic reaction to my first Pfizer shot, which meant that while vaccinated friends, family and coworkers began reclaiming some normalcy in their lives, I remained locked in my own private pandemic.
Before we go any further, this isn’t a story about how dangerous vaccines are. To the contrary, it’s a story of how I struggled to get fully immunized against a disease that has killed around 600,000 people in the United States and at least 3.7 million more around the globe, according to Johns Hopkins’ tracker. Two months, five doctors, one nurse-practitioner, two blood tests and one EKG later, I’m not 100 percent sure if I had an allergic reaction, a strange side effect or, as befitting a life-long overachiever, both at once. But the real shocker was how hard it was for me to switch to a different vaccine, one that wouldn’t send me into anaphylactic shock or something equally scary. I finally got fully vaccinated right before Memorial Day. Later this month, I will reunite with extended blended family and hug my favorite Cub Scout.
It’s also a story about how the Centers for Disease Control (CDC) and the American health system more broadly is not set up in a crisis to deal with the non-cookie-cutter patients, including immune-compromised people with far more serious health issues than my own. After my allergic reaction, I submitted information and updates to the CDC’s V-safe, an app for reporting vaccine side effects which says it reaches out to some patients in need. I also used the Vaccine Adverse Event Reporting System (VAERS), run jointly by the CDC and Food and Drug Administration, and Pfizer’s portal. As a health journalist, I know the lingo, the phrases that should trigger a response. (Allergy! Anaphylaxis! Racing pulse—even while doing yoga!) I was in search of some specific guidance after my reaction. Should I get the second dose? Switch to a different vaccine? But other than routine “submission received” emails, neither I, nor my primary care physician, ever heard a peep from VAERS (which is being spammed by anti-vax submissions), Pfizer or V-safe.
Even after I finally had a safety plan—I would switch to the Johnson and Johnson shot, and receive it in spitting distance of a hospital Emergency Department—health systems in Washington D.C. and Maryland imposed one barrier after another. I never managed to talk to or even email directly with anyone at a nearby hospital to explain my situation, with one exception—and in that case a “vaccine tech” manning a phone line told me I had to take whatever shot their computer assigned me. (“Even if it kills me?” I asked, a tad melodramatically.) I never did manage to get the shot in the ideal setting. The allergist who became my vaccine guardian angel devised a backup plan that kept me safe.
All those doctors’ appointments taught me I’m by no means the only non-traditional patient around. Even within my own family—and everyone age 12 and up in my nuclear, extended and blended family is fully vaccinated—one person who had no problem with the vaccine itself was injected with a defective syringe. He too struggled to find answers about whether a viable dose got into his arm, given how much dripped onto his jeans.
A few weeks into my odyssey, I learned of a CDC consultancy group where physicians could seek advice about patients with unusual vaccine risks or troubles. But none of my own doctors, a high-caliber crew affiliated with Georgetown, Johns Hopkins and George Washington University’s hospitals, knew it existed. And I, super connected in the health care world, only discovered it because one of my sons has a friend from his gap year whose dad serves in the group.
I got my first Pfizer shot at approximately 3 p.m. on Thursday, March 25 in a supermarket pharmacy in a Maryland suburb, not far from Washington, D.C. The vaccination site was not well run nor properly socially distanced: I may yet report them to state regulators. Among other things, when I told them I needed to be observed for more than 15 minutes—I am allergic to bees, among other things, and I had one terrifying side effect after a tetanus shot years ago in Guatemala—the pharmacy tech looked befuddled. “You can stay as long as you want, but you don’t have to.” Nor did they give me information about CDC’s V-safe, which everyone who gets a coronavirus shot is encouraged to use so the public health agency can learn more about side effects and reactions.
Given my own idiosyncratic allergy history, I decided to wait at the pharmacy a full hour. (Millions of people with insect or food allergies have taken the coronavirus shots safely—including my sister. Talk to your doctor if you have concerns.)
The first symptom, an intense headache, began immediately, before I even got back to my seat. That’s a known side effect, though mine came on awfully fast. But when I left the pharmacy, I felt OK. I headed to meet, masked and outdoors, a Politico colleague I hadn’t seen in a year who lived a few blocks away. As I drove, I began feeling numbness in my lips, and it spread, symmetrically from the center. Then the tip of my tongue began growing numb. I felt some swelling in my mouth, but it was minor; I could breathe. That slow ramp up is not typical of an allergic response—but it is precisely what happened the last time I was stung by an itsy-bitsy baby bee hiding in a bushel of plums. That landed me in the ER.
While I always carry an EpiPen, I’m less diligent about maintaining my Benadryl supply out of bee season. Luckily, I had one bedraggled dose buried deep in my bag. I took it, and taught my colleague Epipen 101, just in case. I sat there, the symptoms neither subsiding nor spreading. I asked my husband to come get me; I’d retrieve my car another day.
On an urgent telemedicine consult, a nurse-practitioner with ER experience talked me through what medicines I needed to take over the coming hours. She weighed sending me to the ER but after remotely squinting at my open mouth, and learning that I live close to a hospital, she thought I’d be OK at home. But she advised frequent checks. We set an alarm to wake us every hour. It was a long and somewhat scary night.
She also told me to load up on Benadryl before I got my second shot, and to try to get it in a medical setting, not a retail pharmacy. Fine with me, because I really didn’t want to go into anaphylactic shock near the frozen vegetables.
But I had doubts about whether I should take another dose of Pfizer at all.
So did the next five doctors I consulted, plus two vaccine scientists I know socially, at FDA and at Cornell, (the latter, a case study in why to keep your friends from summer camp). My first reaction to Pfizer was bad but not catastrophic. But repeat exposure in a mere three weeks could be worse; allergies and reactions can escalate. Would it kill me? Highly unlikely, as according to the latest CDC data no one has had a fatal allergic response to the mRNA shots. Could it cause harm, given that I was still having some aftershocks, including an ongoing bout of numbness, from the first shot? Maybe, maybe not. It wasn’t a hypothesis anyone wanted to test.
It took several weeks and a blur of appointments (including one with an allergist who gave me misinformation, including about preservatives in vaccines, and another with the one who became my guide) to devise a plan. We considered settling for partial vaccination. One shot would give me decent though imperfect protection—but it wouldn’t lessen my sense of being trapped, not just emotionally but practically shut out from anyplace that required proof of full vaccination. We talked about giving me my second Pfizer dose in an emergency room—but doctors thought that was still too risky, if we could even arrange it. A science writer friend found a medical journal article by doctors in upstate New York doing “micro-dosing” for allergic people—administering Pfizer but in five small injections. I contacted them but decided if I had to go all the way to Rochester, NY, to get a shot, that probably wasn’t the shot for me. Particularly if we’re going to need boosters, I should get off the Pfizer train.
My Politico health teammates prowled the CDC website on my behalf and found that the agency suggested that people who had a problem with the mRNA vaccines, like Pfizer or Moderna, consider switching to the J&J vaccine after four weeks, although there’s not a lot of data on that option. Eventually, that’s where I ended up. But given that my reaction was unusual and complex, every doctor I spoke to thought I should get still get the J&J dose in the hospital or an adjacent doctor’s office, not as an inpatient but near the ER.
I spent weeks trying to arrange that. Switching shots midstream, especially when there are restrictions on where you can receive the dose, is immensely difficult—even if you know a million people in health care. I’m normally pretty good at navigating our crazy health care system after years of covering it. This time, I met brick wall after brick wall as I searched for a J&J dose, and a safe place to take it.
Because J&J is easier to store than the other shots, it’s mostly used in community settings, not hospitals. And at the time it was impossible to find out which hospitals did have even a limited supply, or how to get it. On top of that, most of my doctors are in D.C., but since I live in nearby Maryland, it was illegal for me to get the shot in DC. Yet in Maryland, health systems wouldn’t even put me on a waiting list if I wasn’t already their patient. Luckily two health care systems—Georgetown/Medstar and Johns Hopkins—had hospitals on both sides of the border, and I had received care from doctors affiliated with each. That freed me from limbo; I could get immunized as long as I stayed on my side of the state line. But further communication was impossible. I could click myself onto the waiting list but I couldn’t find out if a particular facility had J&J, let alone request it. Neither could my primary care physician.
I never managed to talk to Hopkins; at Medstar I signed up and waited more than a week for a telephone consult. That’s when I was told I’d have to take whatever shot I was assigned. Even if I showed up in person to explain that I couldn’t take Pfizer, I was told, I would be deemed a no-show and deleted from their vaccine list. Nor would MedStar call me or my doctor if and when a J&J shipment came in. (A spokeswoman said Medstar Health follows all CDC protocols but does not know in advance what shots it’s going to get from the local government on any given day, so it can’t match a specific vaccine to a patient in advance. Vaccines were still in short supply in early April.) A staffer on the Maryland mass vaccination site phone line grasped my dilemma immediately, but couldn’t help either.
Finally, my new allergist tracked down a single J&J dose. Her D.C. office was one block from the ER at a major teaching hospital, but she couldn’t vaccinate a Marylander there. She had another office, in a Maryland suburb, two miles from a community hospital. Same shot, same doctor, same arm, longer drive from the hospital. I swallowed more Benadryl than I’m used to, and we had two EpiPens and prescription steroids at the ready, in case. She kept me for three hours, observing me carefully, checking my vitals every half hour. My blood pressure was low at first, and I felt faint and dizzy at times, needing to hold on to the wall when I walked—but that was probably the double-dose Benadryl, not the shot. A peanut butter Clif bar and a bag of almonds helped. And, finally, I was vaccinated.
By the time I learned of the CDC panel through my son, my doctors and I had done weeks of tests and research about how I could best get fully vaccinated. I e-mailed my son’s friend’s father—“Bethesda Mom with Pfizer Allergy, Kids are gap year friends”—but he told me the medical experts advise physicians, not patients directly. He did reassure me, one gap year parent to another, that I was in good hands with my new allergist but maybe I’d want to ask her about just one more blood test. She understood, and ordered it before I got my J&J shot.
I had never expected the CDC to drop everything mid-pandemic and rush to my aid, and some of the vaccine reporting sites are for research, not patients. But to have multiple reporting systems and zero outreach to either me or my doctors doesn’t seem like a good plan either. (I do know someone who got a call after a Moderna mishap less serious than my own.) I would have been fine with a response as simple as, “We got your message and we’ll be in touch as soon as we get the next phase of mass vaccination off the ground.” Or an automated response to me or my doctor, referring her to the CDC consulting team—the one that my kid found. These reporting systems should find a way to screen out cranks, post an FAQ and focus on real physicians, with real questions about the non-cookie-cutter patients.
The CDC did not return a request for comment. Pfizer says its safety team reviews all adverse event forms submitted through its reporting system—with expedited review for those deemed the most serious. Its safety team responds to reports if they consider it necessary.
If finding a path forward was this hard for me, an experienced health journalist who lives about halfway between the Department of Health and Human Services and Tony Fauci’s lab, who has coworkers who can suss out details on the CDC website, I can’t imagine what most people do. Many probably just skip the second shot—not the desired public health outcome when we are trying to vaccinate our country out of the pandemic. Every unsolved problem allowed to fester undermines a battered public health system just at the moment we need to be rebuilding trust, not fear. We need information that’s fast, accessible, responsive. That’s the cornerstone of trust.
These mRNA vaccines—Pfizer, Moderna and more in the pipeline—are wondrous breakthroughs that will likely lead to new and better vaccines for a whole range of diseases, from flu to maybe, just maybe, HIV/AIDS. I’m not sure I will be able to take mRNA vaccines in future, but I’ll worry about that later. For now, I’m vaccinated and, given that so little is known about mix-and-match vaccines, I’ve started looking for scientists who might want to study the antibodies and T cells in my blood. The relief hasn’t fully kicked in; these two months took a toll. But I’m starting to feel lighter as I walk through the neighborhood and see gardens blooming, unmasked children at play. And if my stress hasn’t all oozed out by next weekend, the Cub Scout hug should take care of it.