Beyond the Vaccine – protecting our immunnocompromised from Covid with Evusheld

What would you do if the Covid vaccine didn’t work for you? There are between 7 and 9 million Americans with weakened immune systems, in some cases, the vaccine literally doesn’t work. Enter Evusheld which provides up to 6 months of protection… if only you can find it.

Twenty years of living with Multiple Sclerosis as a nurse

Almost twenty years ago, in July 2002, I was diagnosed with multiple sclerosis (MS). Shortly after my diagnosis I enrolled in nursing school, and for the last 15 years I’ve been a registered nurse working at the bedside in an acute care hospital. Today I work in the operating room of a Level I trauma center in the San Francisco Bay Area.

Jennifer Spring is a nurse living and working in the San Francisco Bay Area

When I was diagnosed, disease-modifying therapies (DMTs) for MS were limited in number and effectiveness. Although there is still no cure, today a person with MS can choose from many different DMTs, all of which are effective at slowing the progression of the disease. Four years ago, the neurologist I see at a local hospital recommended that I begin rituximab infusions every six months to manage my MS.

Fighting MS, weakening my immune system

Rituximab is a B-cell depleting therapy; this means it targets and destroys B cells in the recipient’s body. Since B cells are responsible for creating antibodies, failure to respond effectively to vaccines is a known side effect of rituximab treatment.

I was aware of this when I began treatment but I didn’t think too much about it. After all, I’d received all my childhood vaccinations and as part of enrolling in nursing school I was required to have blood tests to prove I still had immunity. There were no recommended vaccines for adults in my age group beyond a yearly flu shot.

Covid, Nursing, and Rituximab

The novel coronavirus SARS-CoV-2 began to spread around the world two years after I started rituximab, reaching pandemic status with dizzying speed. At the hospital, we did what we could to protect ourselves. We reused PPE. We washed our hands raw. We isolated ourselves from our families and friends so we didn’t inadvertently infect them. We updated our advance directives so our end-of-life wishes would be known in case we became critically ill, and we hoped against hope for a vaccine that would save us all.

That vaccine arrived astonishingly quickly. My coworkers and I received our first doses in late December 2020 and we were giddy with hope. I remember thinking, “This is how the pandemic ends. Everyone will get vaccinated and we’ll all get our lives back.”

We all know that’s not how things worked out. At the beginning of February I received my fourth dose of covid vaccine, as recommended by the CDC. Three weeks later, I had an anti-spike-protein antibody test that showed what I always suspected would be true: I had zero antibodies. Without B cells, my body was unable to respond to the vaccine. I was nowhere near as protected against covid as the rest of my coworkers, and I felt like a sitting duck as the incredibly transmissible Omicron variant arrived.

A sitting duck, a new hope – Evusheld

The FDA issued an emergency use authorization in December for a new pre-exposure prophylactic antibody drug called Evusheld that was specifically meant to provide antibody protection against covid-19 for immunocompromised people like me. I contacted my neurologist immediately, and kept doing so every couple of weeks, to ask how to get it. I anticipated being able to receive it quickly given my level of immunosuppression from rituximab and my extremely high risk of acquiring covid at work.

How the (heck) can I get Evusheld?

My neurologist didn’t have any information about Evusheld availability. Nor did he know which patients would get it, how patients would be prioritized given its limited supply, or when it might be my turn. He promised to look into it, but every time I contacted him for an update he had no new information.

We went back and forth like this for almost three months. At the end of February after I’d sent him yet another message asking about Evusheld, he replied with the first piece of new information since the EUA: he was required to get an infectious disease consult before any of his eligible patients would be able to get Evusheld.

I felt sick to my stomach when I read his message. There was a global pandemic! Infectious disease teams everywhere were worn thin from the work of responding to it. How would involving the busiest people in the hospital somehow make this process more efficient? How could more bureaucracy get doses to the people who needed it?

Bad news – double Evusheld dose required

The very next day the FDA updated the EUA for Evusheld, doubling the dose to be given to each patient. This effectively halved the number of available doses; adequately treating each patient would now require using twice as much of the drug.

More bad news – no masks, no vaccines, no problem?!??!

Mask mandates and vaccine requirements were being lifted all over the country and people talked about the end of the pandemic, even though more than 2,000 people like me were still dying of covid every day. The same people who clapped for me every evening at 7:00 pm and called me a hero were no longer willing to do simple things like wear a mask in public places in order to keep me safe. I felt what can only be described as despair.

And then came Rob and his amazing Evulsheld locator

Enter the incredible Rob Relyea and his searchable database of Evusheld sites. Unlike the official Department of Health and Human Services covid-19 therapeutics locator website which states in bold text that the site is for healthcare provider use only and that “patients should not contact locations directly unless instructed to do so by their healthcare provider,” Rob’s database was meant to be a resource for immunocompromised people who had been left to fend for themselves.

I found Evusheld

Through Rob’s database I found a freestanding infusion center near me that had doses available. I was able to make an appointment online. All I needed from my doctor was a signed referral form, which he was very happy to provide. Finally, after three months of legwork and self-advocacy, I got Evusheld on March 8th. Back in my car after the appointment, I had a little cry from the relief.

Despite the fact that I’ve been a patient there for eleven years, not once did anyone at my insurance company reach out to me about Evusheld. For three of those eleven years I was an employee of that company, working as staff nurse at the same facility at which I received my care. Yet everything I knew about Evusheld came from my own personal hunt for information and access.

… but what about everyone else?

I’ve been a nurse for 15 years. I work in a big, academically-affiliated, Level I trauma center. I have excellent health literacy and an insider understanding of how health care works. I have a huge personal and professional network of health care contacts. And I am the very definition of privilege: I’m white. I’m college-educated. I speak fluent English. I’m employed in a well-paying job with benefits that include excellent health insurance. My chronic illness is well-managed. I had the free time to devote to this cause.

Imagine for a moment what this experience must be like for people who don’t have these privileges. Imagine adding illness, ableism, racism, homophobia, transphobia, or fear of deportation to this bewildering and exclusionary process.

There are so many people out there who should have access to this potentially life-saving treatment and many of them don’t even know it exists. A better, more easily-navigable process for connecting vulnerable patients to Evusheld is critical as mask and vaccine mandates make public spaces increasingly less safe for the most vulnerable. Real, valuable lives depend on it.

Healthcare providers, your patients need you. Reach out to them. Today. Now. I know I sure could have used some help.

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