In May, Richard Schlueter, a 56-year-old resident of Greensboro, Georgia, faced a life-altering moment while planting cucumbers and squash in his community garden plot. As he tore open a bag of soil, he heard a disturbing pop—his collarbone had snapped. Just weeks later, a medical scan revealed that his battle with cancer, which began in his tonsils, had escalated dramatically, spreading throughout his bones.
In early June, desperate for help, Richard contacted a medical team at the National Institutes of Health (NIH) that had developed an experimental cell therapy specifically designed to combat his type of cancer. However, he was met with disheartening news: his treatment would be postponed for at least a month due to significant staff cuts at NIH. This delay was a stark reminder of the troubling changes occurring within the biomedical research agency.
As Richard and his wife, Michelle, watched NIH Director Jay Bhattacharya publicly address staff concerns about recent personnel cuts, they felt the weight of the situation. Bhattacharya dismissed the concerns raised in a document known as the Bethesda Declaration, claiming they reflected "fundamental misconceptions" about the NIH's new direction. Despite assurances that each termination was under review and some employees would be reinstated, Richard's therapy remained in limbo, trapped in a freezer and awaiting necessary preparations.
On June 3, Richard received further distressing news from his NIH doctor: the final preparation for his therapy would now take eight to ten weeks instead of the previously promised three to four weeks, all due to the loss of essential lab personnel. “I’m petrified. I have to do something,” Richard expressed. “My cancer is on the move.”
Reports from The Washington Post highlighted that the production of specialized immune-cell therapies for patients with metastatic cancer had been significantly delayed. Two highly skilled technicians responsible for preparing these treatments were among those dismissed during a probationary purge in February. Steven Rosenberg, a pioneer in NIH's immunotherapy research, confirmed that his team could only treat one patient per week, a drastic reduction from two or three before the cuts.
“There are some patients who might have to wait until September,” Rosenberg stated, emphasizing the urgency of the situation for those dealing with progressive metastatic cancer. The emotional toll of informing patients about these delays was substantial.
Richard's cancer journey began with what he initially thought was acid reflux. After a troubling physical exam in January 2024 revealed a metallic taste in his mouth and visible symptoms on his tonsils, a biopsy confirmed he was facing head and neck squamous cell carcinoma. An oncologist assured him that while the situation was serious, it was treatable—provided it hadn’t spread. However, a scan in July revealed a grim reality: the cancer had metastasized to his lungs and chest cavity.
Despite this harrowing news, Richard felt fortunate to qualify for a clinical trial at NIH led by Rosenberg. This trial involved isolating and expanding tumor-infiltrating lymphocytes (TIL) from Richard's own cancer cells, with the hope of reinfusing these tailored immune cells back into his body. “Patients often refer to us not as the National Institutes of Health, but the National Institutes of Hope,” Rosenberg remarked, highlighting the glimmer of optimism Richard and others found in the trial.
In late March, Richard returned to NIH, believing he was on the brink of receiving his therapy. However, a subsequent scan revealed that the tumors in his lungs had unexpectedly shrunk. He left with the bittersweet knowledge that his therapy was ready, but the uncertainty of his cancer's progression loomed large.
As the weeks passed, Richard's condition deteriorated. The once-active man, who enjoyed golfing and fitness, began experiencing weakness due to the aggressive spread of his cancer. The Schlueters faced a challenging reality as they prepared for Richard’s 30th wedding anniversary, where even the simple act of walking down the aisle became a struggle.
Rosenberg's team continues to meet and discuss the cases of critically ill patients like Richard. Another patient, Natalie Phelps, a mother of two with metastatic colorectal cancer, is also waiting for treatment in a different trial facing similar delays. “So frustrating. I should be having treatment now, but instead I had to restart chemo,” she shared, reflecting the widespread impact of NIH’s staffing issues.
Richard remains hopeful, yet he is acutely aware of the urgency of his situation. He fears not qualifying for the experimental immune cells that could potentially reverse his cancer's trajectory. Delaying treatment is not an option, as the cancer spreads swiftly. Robert L. Ferris, a head and neck surgical oncologist, cautioned that while the cell therapy may not cure Richard, it could provide valuable insights for future patients. “If the cells are ready, you would want to give it to him now,” Ferris emphasized.
As Richard and Michelle navigate this challenging journey, they hold onto the hope that Richard's experience can pave the way for future advancements in cancer treatment. “If he misses it, not only is it devastating for his family, but it’s devastating for all the patients behind him,” Michelle reflected. “He’s like a test pilot.”
