Up until his death, Randolph Pherson was trying to solve a problem.
Those who knew him won’t find it surprising that his life ended that way. The former CIA analyst was known in the international intelligence community for his critical thinking skills and analytic techniques. He wrote books on the subject and gave lectures on the topic. Thought leaders turned to him to get his thoughts on thinking.
But in the last several years, Pherson faced his hardest-to-solve problem: How to improve the medical experiences and outcomes of people with a rare disease?
In 2021, after experiencing a constellation of concerning and painful symptoms for seven years that left doctors stumped, Pherson became critically ill while traveling in Iceland with his wife and a group of close friends. Through a series of fortuitous connections – ones that Pherson talked about in a Washington Post article that detailed his medical mystery – he finally received a diagnosis from the National Institutes of Health in 2022. He learned that he had a rare inflammatory disease called VEXAS.
If you’ve never heard of VEXAS, you are far from alone. Most medical professionals haven’t heard of it, which means many have sat in front of undiagnosed patients and not been able to give them answers or help.
Pherson hoped to change that.
“He felt very strongly about getting the word out,” his wife of 50 years, Kathy Pherson, told me on a recent afternoon. “He felt so strongly about number one, surviving himself and getting on the other side of this, and number two, being able to share his experience and helping others find some relief.”
On Thursday, Kathy Pherson buried her husband, who was 74 and known to many as Randy. And on Friday, she celebrated life for him and hundreds of people attended.
But even on a week dedicated to grieving her husband’s death, Pherson spent time thinking about how to give life to the project they were supposed to work on together. The two worked at the CIA for 28 years, raised two children and wrote books together. Their latest plans called for turning their nonprofit organization into one focused on bringing global awareness to VEXAS and providing a community for those impacted by it.
On Jan. 11, the day Pherson died, the couple were scheduled to have their first meeting about starting the VEXAS Global Foundation with Dr. Janet Baker, a close family friend who took Pherson to his many medical appointments, and Dr. Marcela Ferrada, a rheumatologist who helped discover VEXAS and now works at the University of Maryland.
I spoke with all three women, and they talked with conviction and urgency about creating what Randy Pherson envisioned. They talked about the frustration that people with rare diseases experience when physicians don’t listen to them, even though those patients usually know more about their conditions than most medical providers. They talked about the dangers and missed opportunities that arise when different specialists treating the same patient don’t communicate. They talked about the pain Pherson endured during the last years of his life.
VEXAS, which is estimated to affect 1 in 4,000 men over 50, can cause symptoms that include painful rashes, swollen joints, abnormal blood counts, shortness of breath, fevers, and extreme fatigue.
“We need to do this for him,” Kathy Pherson said. “I don’t want to see other people have to go through what he went through.”
Ferrada, who met Randy Pherson after his diagnosis and helped manage his care for almost two years, went to the couple’s home on the day they were supposed to discuss the foundation. By then, Pherson was mostly unresponsive. Ferrada sat next to him and held his hand.
“I felt horrible because I really wanted to have that discussion with Randy, and he really wanted to have that discussion,” she said. She recalled telling him, “I know this is very important to you, and I promise you that I am going to do everything in my power to help patients with VEXAS, and we’re going to do it in your name.”
The last word she recalled him saying was, “Okay.”
“I think what Randy wanted to do is something that is going to have a tremendous impact, not only in the United States but also in other places,” Ferrada said. She described the foundation as providing hope – hope to patients and hope to physicians. She said the foundation plans to address VEXAS from various angles. “It’s going to be awareness. It’s going to be access to diagnosis. It’s going to be teaching. It’s going to be research.”
It’s going to be creating a program where people with VEXAS can go to see a rheumatologist who understands the condition. Ferrada, who also has a rare condition, plans to create that at the University of Maryland.
Janet Baker took Pherson to most of his medical appointments. That view allowed her to see the ways the country’s medical system fails to help people with rare diseases.
“He really pushed the system further than the system was designed to go, and it needed to be pushed more,” Baker said. She ended up going to the emergency room with him more than a half-dozen times in the last six months. She said she went with him as a friend, not as his physician, but her presence and knowledge of his condition at times made a difference. “There were a few instances as recently as this fall where they took what I said to heart and what I said changed their treatment.”
Other people should also have access to experts, she said. These are the types of conversations she, Ferrada, and Pherson now have. Some of the questions they have been asking are: What are the needs? What are the best ways to address them? How would Randy apply analytic techniques to the problem?
For a book he published in 2020, Pherson applied those techniques to medical care. The title of that book was, “How to Get the Right Diagnosis: 16 Tips for Navigating the Medical System.” What he wanted to call it, his wife said, was this: “Questions to ask your doctor if you don’t want to die.”
“He would have been all in on this,” she said of the foundation. “We have done things together as a team for more than 50 years, and when I think, ‘What would he want me to do with this,’ it’s a pretty easy answer.”
A GoFundMe page the women created to support the effort reads, “No better memorial exists for Randy than to help us fulfill his dream of spreading the word about VEXAS – how to get tested, how to manage the symptoms, and how to share and learn from the experience of others.”
“He had a big mind as a visionary,” Baker said. “He had multiple dreams. But this was personal and critically important to him.”
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