Rob Relyea set out to find information to help his wife.
A longtime Microsoft engineer, Relyea had over 28 years of experience in the business using technology to solve a variety of problems. Now he had a personal one.
Last March, in the midst of the COVID-19 pandemic which was already a struggle for so many, Rebecca Relyea was diagnosed with a type of non-Hodgkin’s lymphoma.
The timing of his diagnosis and the availability of COVID vaccines overlapped. She received her injections and also underwent chemo-immunotherapy, which ended around September. The cancer treatment was successful and Rebecca Relyea is now in remission.
But she joined the millions of Americans who, despite vaccines and declining case numbers, live in fear of COVID-19 due to weakened immune systems.
“If you can imagine, she fought cancer successfully in 2021, but COVID is still here,” Rob Relyea said. “We knew she was more at risk. But COVID is very dangerous for her right now because if she caught it, the vaccine was not going to help her defend herself.
The American Medical Association estimates that immunocompromised people make up at least 2.7% of American adults, or about 7 million people. This includes those who have had organ transplants, stem cell transplants, and cancer, as well as those with primary immunodeficiency and those being treated with immunosuppressive drugs.
As the recent surge of Omicron variants fades from memory and calls grow louder to end mask mandates, work-from-home orders and other protective measures implemented during the health crisis 2-year-old Relyea joined the call to remember those who are still in grave danger of infection.
In an article published Wednesday, The Atlantic calls this segment of the population “stuck in pandemic limbo.”
In his search for information to help his wife, Relyea landed on healthdata.gov, a site of the US Department of Health and Human Services, where data is available on the locations of publicly available COVID-19 therapies.
Relyea was researching the availability of Evusheld, a drug manufactured by AstraZeneca and approved by the FDA in December. The monoclonal antibody combination is designed to protect patients who have not developed an adequate immune response to vaccination against COVID-19.
While exploring the healthdata.gov API, Relyea reacted like a tech who had come his way and created his own share of programs and datasets. He found the government feed to be “a bit ugly” and said the data “wasn’t even sorted by state, city, county.”
Relyea got to work finding a better way to share Evusheld’s uptime data. He eventually built a website using Github pages. It’s been tweaking features for weeks, adding an interactive map of the United States, for example.
“Instead of being in the form of a giant spreadsheet, it tries to make it so you can sort of understand,” he said. “It’s very easy for people to access this site, navigate to any state they’re interested in, and share it with a family member or whatever.”
In Washington State, for example, Relyea’s site cleanly lists counties, cities, and healthcare providers, and it constantly pulls up-to-date data on available and assigned doses of Evusheld to those locations. . It seeks to add the number of vaccines actually given to people, either by provider or by state.
Relyea has also been in contact with a vice president and product manager at Socrata in Seattle. Socrata, which helps government agencies better use and display data, was acquired by Tyler Technologies in 2018, and runs the platform healthdata.gov uses to publish data.
“I hope to work with them and HHS to help them improve the default data visualization experience,” Relyea said.
Relyea has been active on Twitter and he has been in contact with other leading advocates for immunocompromised people during the pandemic, including Dr. Vivian Cheung, a Maryland doctor with a rare genetic disease. Cheung spoke to NPR in January about the difficulty in finding and obtaining Evusheld.
The federal government has purchased only about 1.7 million doses of Evusheld, well below the amount needed to protect 7 million people with compromised immunity. Communication about the drug’s existence, where and how to get it, and who is eligible is considerably less than how information has been communicated about COVID vaccines.
“There’s a fundamental problem here in this whole process – I shouldn’t be involved,” Relyea said.
Relyea believes that hospitals should reach out to patients. He worked with teams at two different hospitals to secure Evusheld for his wife. She received an injection last week that should give her protection for six months, which would see her through almost 12 months after her last chemotherapy treatment, an important benchmark for the growth of healthy B cells.
Dealing with the pandemic and cancer feels like a double whammy that would surprise most people. But for Relyea, the process of mining the data and creating an information resource was something of a coping mechanism.
“It’s definitely been helpful in my advocacy to get a dose for my wife. It’s become an outlet to help other people as well,” he said. I enjoy helping people, I’m glad they all work together here.