a day ago
His custom cancer therapy is in an NIH freezer. He may not get it in time.
Richard Schlueter, 56, was planting cucumbers and squash in his community garden plot in Greensboro, Georgia, in May when he tore open a bag of soil and heard a pop. His collarbone had snapped.
In early June, a scan revealed that the cancer that started in his tonsils was racing through his bones. That day, he called a medical team at the National Institutes of Health that had created an experimental cell therapy, custom-made to attack his cancer as part of a clinical trial. He needed it. Now.
Instead, he received more bad news: His therapy would be delayed at least a month because of staff cuts at NIH.
A week later, Schlueter and his wife, Michelle, saw NIH Director Jay Bhattacharya push back on concerns raised by his own staff that the ouster of essential employees and other disruptions to the biomedical research agency were harming science and patients. Bhattacharya said on X that objections raised in a document called the Bethesda Declaration contained 'fundamental misconceptions' about NIH's new direction. Each termination was being reviewed, and some workers were reinstated, he added.
But the Schlueters had a front-row seat to the effects of the job losses. Richard's therapy was in a freezer, nearly ready to go. All along, they had been told the final step of preparation takes three to four weeks. But on June 3, his NIH doctor informed him that it would now take eight to 10 weeks because of cuts to essential lab personnel — a painful illustration of the life-and-death stakes of the administration's approach to shrinking the government workforce.
'I'm petrified. I have to do something,' Richard said. 'My cancer is on the move.'
The Washington Post first reported in early April that the production of specialized immune-cell therapies for metastatic cancer patients was delayed. Two highly skilled technicians who prepared cells for treatments were fired in the probationary purge in February, according to Steven Rosenberg, an NIH immunotherapy pioneer who leads multiple trials. He declined to say how many patients were affected, but his team now treats one patient per week, down from two or three before the cuts.
'There are some patients who might have to wait until September,' Rosenberg said. 'These are all patients with metastatic cancer that is progressive. You can imagine the difficulty as we have to tell them these things.'
An official with the Department of Health and Human Services, which oversees NIH, said the agency had ways of addressing the delays. Rosenberg has been granted permission to hire contractors or to request help from other scientists from across NIH, said the official, who spoke on the condition of anonymity to criticize an employee.
Rosenberg said he has been working urgently to try to rehire a scientist who was fired since he was given permission to do so last week, but the federal contracting process is slow and the scientist has been interviewing for other jobs. He noted that to prepare the cells for patients requires special training that takes four to six months.
Richard's cancer nightmare started with what he thought was acid reflux.
A few weeks after his annual physical in January 2024, he noticed a metallic taste in the back of his throat. Looking in the bathroom mirror, he saw little white pustules on one of his tonsils.
A scan and biopsy showed it was head and neck squamous cell carcinoma, but an oncologist told him it was treatable, with an excellent chance of success. Unless it spread.
On Richard's 55th birthday, March 11, 2024, he began chemotherapy and proton therapy. He had always taken good care of his health and was diligent with his treatments. But a scan in July revealed that the cancer had spread to his lungs and part of his chest cavity.
'It was heart-wrenching, and it was difficult,' said Richard, a founding partner of an Atlanta law firm. 'I'm a fact-finder, and I spend a lot of time researching and trying to find a path to remission or a potential cure. And it's a pretty bleak outlook.'
Richard's efforts led him to NIH, where he felt blessed to qualify for a trial led by Rosenberg. Doctors would take a biopsy of his cancer and find and isolate immune cells called TIL, tumor-infiltrating lymphocytes. They would use lab tests to select the cells that recognized Richard's cancer and expand the population. Then, they would reinfuse them into his body.
There are no guarantees with clinical research. Patients who qualify for the trial have exhausted standard treatments. But it gave the Schlueters something they had been missing: hope.
'Patients often refer to us not as the National Institutes of Health, but the National Institutes of Hope,' Rosenberg said.
In January, Richard went to NIH for surgery to remove two tumors in his lungs and begin the process of isolating and testing the TIL cells. He read the NIH credo — to improve the human condition throughout the world — emblazoned on a wall of the Clinical Center and was so moved that he sent a photo of it to his three children.
'The staff, the physicians, the amount of empathy, care and mission that I've experienced over four visits to their research hospital has been just super gratifying,' Richard said. 'In many ways, I'm a guinea pig that may be helping other people. But I also have the byproduct that if it works, it will help me.'
In late March, Richard returned to NIH, thinking it was go time. Instead a scan showed that the tumors in his lungs had unexpectedly become smaller. He returned home, knowing his therapy would be ready in the freezer if he took a turn for the worse.
Rosenberg's team meets every Monday to discuss patient cases, and for months they have had to make difficult calls to seriously ill people. Richard is just one.
Natalie Phelps, a mother of two from Bainbridge Island, Washington, with metastatic colorectal cancer, is waiting for cells in another of Rosenberg's trials. This one uses a different form of immunotherapy, but it is also slowed because of the loss of critical personnel.
Last Friday, she gave The Post an update: 'So frustrating. I should be having treatment now, but instead I had to restart chemo and will be returning to start the treatment process' in late July.
Two scientists on Rosenberg's team who have specialized skills to prepare cells for immunotherapy trials were among the thousands of probationary employees fired in the Trump administration's push to shrink the federal workforce.
The one who would have finalized Richard's infusion had worked at NIH since 2020 and was recently hired as a full-time employee because she was considered so effective, according to Rosenberg. But that made her vulnerable, as a probationary employee with fewer protections. Rosenberg is trying to hire her back on contract using nongovernment funding.
Richard is an optimist. His biggest fear is not qualifying for the experimental immune cells that he hopes could beat back his cancer.
Doing nothing isn't an option because his cancer is spreading rapidly. Radiation might buy him time but leave his white blood cell count too low to be eligible for the trial.
Robert L. Ferris, a head and neck surgical oncologist at the University of North Carolina Lineberger Comprehensive Cancer Center, said patients such as Richard have tough and tragic cases where standard medical care has been exhausted. Ferris is not involved in Richard's care, but the doctor said the trajectory of a cancer like this is grim.
It is unlikely the cell therapy will cure Richard, Ferris cautioned, but science progresses through individual cases like his. And if Richard is forced to wait too long, he could be too frail to try it.
'If the cells are ready, you would want to give it to him now,' Ferris said.
In mid-May, Richard was golfing with his nephew and his son. He was running, swimming, biking and lifting weights. The only sign something was awry was a red rash on his face that resembled a sunburn, a side effect of one of his treatments.
But as the cancer has spread through his bones, his arms have become weak, and he has a suspected microfracture in his right arm. Pain in a hip makes it hard to get out of a chair. The Schlueters' 30th wedding anniversary celebration in early June was a joyous occasion, but Richard struggled to walk down the aisle to renew their vows.
Even if the therapy doesn't save Richard, his family hopes his experience can help others.
'If he misses [it], not only is it is it devastating for his family, but it's devastating for all the patients behind him that could have learned something scientifically — on why it was successful or not successful,' Michelle said. 'He's like a test pilot.'
