COVID-19 Vaccine Decision Still Complicated, Personal

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by Annie Dixon |

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The opinions expressed in this column are the author’s and do not reflect those of aHUS News or its parent company, BioNews. Seek the advice of your physician or other qualified health provider if you have any questions about the COVID-19 vaccine.

In March 2020, we hunkered down along with our fellow citizens for what we thought would be two weeks to slow the spread of a pandemic. A lot has happened since then, including the development of vaccines and the passage of two years. Now, as the world’s attention turns to a new crisis, my husband and I still aren’t persuaded we should get vaccinated against the last one.

Six years ago, when my husband first manifested the symptoms of atypical hemolytic uremic syndrome (aHUS), his health choices were easy. What will it be: life or death? Let’s go with life. How about trying a recently approved drug in an effort to avoid certain kidney failure? Sure.

The options were singular, and the alternatives were dreadful. These were easy decisions that fell into the Nothing to Lose category.

Public solutions and personal decisions

The past couple of years, COVID-19 has affected many aspects of everyone’s life. Legislators made policies and enforced them in a one-size-fits-all manner; the reception varied by geography and demographics. Lockdowns and mask mandates were instituted in big cities and small towns and applied to the young and the old, as well as the fit and the frail. Vaccines were developed quickly, given emergency use authorization (EUA), and promoted to everyone.

But the very nature of rare disease means patients like my husband aren’t like everyone.

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We vacillated. Should he or shouldn’t he? Could the shot trigger an overactive immune response? Or would the virus be life-threatening? What about me? As his sole caregiver, what if I had a bad reaction from the shot? Or if I didn’t get it, what would happen to him if I got sick with the virus? These were tough decisions, with many variables, that fell into the No Room for Error category.

We were not all in this together

Despite the sense of community many experienced in fighting the pandemic, we felt alone. But we were not alone in our hesitancy. Indeed, in the fall of 2020, a majority of respondents in a survey of rare disease patients and their caregivers was hesitant to take COVID-19 vaccines approved under an EUA. But the U.S. Food and Drug Administration and Centers for Disease Control and Prevention were quick to assure such patients that the vaccines posed little risk to them.

We decided to bide our time. It was too early in the process, with little data for anyone, much less for those who were factoring in rare disease considerations. My husband’s specific demographic consists of fewer than 1,000 people in this country, and they seemed as hesitant as we were.

I envisioned a room full of aHUS patients in line for the vaccine, each politely stepping aside and inviting those behind them to go ahead.

“You first.”

“No, I insist, after you.”

Expert advice and calculated risk

We sought the guidance of his doctors. The general practitioner gave us his pitch for the vaccine, due to age, weight, and other standard measures. When we asked about its effect on his carefully managed aHUS, the doctor admitted to a lack of data. One specialist not only recommended a shot with absolute certainty, but also specified which one would be safest. The authorization for that version was paused shortly thereafter. Our decision to postpone the decision looked prudent.

We opted to continue to minimize our potential exposure to the virus and keep an open mind but covered arms regarding the vaccine. So we monitored aHUS News and other sites dedicated to rare diseases for news and chat.

A year later, we have seen reports of COVID-19 triggering aHUS. Well, that’s not good; maybe we should get vaccinated. But then last month, we read the AstraZeneca vaccine may have triggered the onset of aHUS in a patient. Oops, maybe we shouldn’t get the shot. But then again, a recent report shows COVID-19 infection likely triggered aHUS in five cases. What to do?

There are no simple or universal answers, for society, for rare disease patients, or for the two of us. The country is currently evolving from a panicked pandemic attitude to calmer management for what some call an endemic. This parallels our personal journey with aHUS, from acute onset and emergency treatment to perpetual management of a chronic condition.

The pandemic policies have proven the old adage that all politics are local. The concerns of rare disease patients during this period have offered a corollary: all medicine is personal.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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