Editor’s Note: Rob Relyea is an engineer and an advocate for the immunocompromised. He created a digital tracker to locate available doses of Evusheld and other Covid-19 therapies. He is currently on personal leave from Microsoft. The views expressed here are his own. Read more opinion on CNN.
My wife’s lymphoma diagnosis and 50th birthday came on the same day in March 2021. Rebecca had been aggressively chasing the cause of the small lump she found in her abdomen. With access to a world-class cancer center and support of family and friends, her chemoimmunotherapy regime was deemed a success after a six-month fight. Remission!
This was right around the time that Covid-19 vaccines became widely available. Rebecca’s oncologist encouraged her to get her shot ASAP. She participated in a Leukemia & Lymphoma Society study which found that many blood cancer patients’ immune systems had a markedly worse antibody response to the vaccine, compared to healthy individuals.
Another recent study published in the journal Nature Cancer found that a third shot of vaccine improves immune responses, unless the recipient of that shot is on a specific drug – which happened to be a key part of my wife’s treatment regime. We were left feeling hopeless; Rebecca’s test results showed that her condition and her treatment had conspired to prevent her body from mounting a full immune system response to the vaccine.
Rebecca had won the first round against lymphoma, but our fear of her heightened danger from Covid-19 only grew. We lived with two anxieties: Would her cancer return, and could she stay safe from Covid-19?
Protecting the immunocompromised
Throughout this time, family and friends did all we could do to protect her. I followed developments and grew my understanding of how to keep her and myself healthy. Vaccines and boosters were required for anybody with whom she would spend time.
We were early adopters of N95 and KN94 masks. I did all the shopping. Carryout meals were OK, but no indoor dining in public. Non-household members visited us outside in the backyard. Paid medical leave (thanks to my employer and the state of Washington) allowed me to support her fully. Eventually, we added rapid testing of close family visiting her at home as a key part of her protection.
Then, on December 8, the US Food and Drug Administration announced emergency use authorization for Evusheld, a two-dose cocktail of two different monoclonal antibodies, for moderately to severely immunocompromised people. A randomized clinical trial had shown that the drug could provide 77% reduced risk of Covid-19 for recipients compared to those who received a placebo.
Protection can last six months in the body, to fill the void of antibodies against Covid-19 in immunocompromised people. Evusheld seemed like the pandemic gamechanger that immunocompromised people had been waiting for.
But almost four months in, our health system has failed to execute its campaign to protect the vulnerable. The supply of Evusheld is short, patient outreach is poor and goals to protect the immunocompromised are not being set, measured or reached. On top of that, we are not effectively using the supply already in the pipeline, with thousands of boxes sitting around unused. (In a statement to CNN, a spokesperson for the Department of Health and Human Services said that the government is “committed to helping protect immunocompromised Americans and other vulnerable populations from COVID-19,” noting that while the national supply of Evusheld is great enough to meet the requests of every state, finding and accessing doses has been challenging for some.)
Evusheld is in short supply – and even shorter distribution
The government initially ordered 700,000 doses of Evusheld, and 1 million more between January and February. But, as Matthew Cortland, a senior fellow at progressive think tank Data For Progress, pointed out, this presents a major math problem: 1.7 million doses would only provide one year of protection for 850,000 of the at least 7 million Americans who are immunocompromised. How can we think that is good enough?
On February 24, the FDA announced the recommended dose needed doubling due to continued analysis of Evusheld’s effectiveness against certain Omicron subvariants. This move effectively meant that we had half the supply we thought we had a day earlier – now only enough for one year protection for 425,000 of the 7 million people. And now, due to shifting variant prevalence, the FDA can no longer recommend a timing for repeat dosing.
We don’t know what the new dosing guidelines will be, or when the FDA feels confident issuing them. But we know there won’t be enough doses to go around.
Patients need information
Based on my conversations with other immunocompromised people, most are not learning about this drug from their doctors. And equity is hard to maintain when word of mouth is how news about key health initiatives is spread.
The brand new covid.gov website needs to provide information on Evusheld for the immunocompromised in addition to vaccines, masking and testing.
Beyond that, health organizations need to fix this lack of information. Use patient medical records as a starting point in the effort to find people who would benefit from Evusheld. Contact them. Help them get in line. Provide transparency. People lacking great health care access must be identified and routed to available doses.
HHS needs to set goals for Evusheld distribution
Despite capturing data from Evusheld providers, the US Department of Health and Human Services doesn’t share the quantity of the drug that has been administered to patients. It also hasn’t publicly shared goals for getting doses to patients.
Without goals and measurements, how can we rally our health system to protect the immunocompromised?
After my advocacy for several months, my wife has secured her dose of Evusheld, but there are so many more who need protection. I’m working closely with other advocates to call for needed improvements to the Evusheld campaign.
As a software engineer, I’ve been able to understand governmental data about Evusheld inventory, and I’m sharing it in useful ways with a mapping tool that is easy to use and shows the inventory history of Evusheld at hospitals across the nation.
It has enabled many eligible people to help their doctors locate doses for them. This information can fill existing gaps in distribution, enabling people to advocate for themselves or loved ones. But people shouldn’t be forced into what I’ve previously called a “Hunger Games” hunt.