The CAR T Caregiver: “Never in the Limelight,” but Critical to Access

In 2018, as Patty Koffman prepared for the aftermath of her husband Brian’s treatment with chimeric antigen receptor (CAR) T-cell therapy, the team from Seattle Cancer Care Alliance and Fred Hutch Cancer Center “did everything they could” to educate her and Brian on what was coming—from cognitive symptoms to other signs of cytokine release syndrome (CRS), the risk of fevers, and just how awful Brian would look.

“The doctor said, ‘Patty, no matter how bad he gets or how bad he looks to you, don’t tell me to pull the plug—I can bring him back. And that was a very sobering statement to me…it terrified me,” Patty said in a recent interview with The American Journal of Managed Care (AJMC) from her home in California.

“Terrifying” and “sobering” were just a couple of ways Patty described her journey as the caregiver of her husband, retired pediatrician Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, who was among the first 100 or so patients to receive CAR T-cell therapy for chronic lymphocytic leukemia (CLL) when he did so through a clinical trial.

Patty also shares her gratitude; she knows that patients with cancer who lack someone like her in their lives could miss a chance at today’s life-changing therapies. As hairy as it was, Brian “got 5 years of remission,” Patty said. “This really does happen with CAR T therapy, and in Brian’s case, he was out of other options.”

More than 20 years out from his diagnosis, Brian is eager to see more attention paid to caregivers like Patty—not just for patients receiving CAR T-cell therapy but also for those receiving bispecific antibodies, as these patients also require careful monitoring in the days after an infusion. He knows better than most that as CLL treatment advances, these therapies will be among the choices for patients whose disease progresses. In CLL and other blood cancers, multiple studies presented at the 2025 American Society of Hematology Annual Meeting and Exposition highlighted therapies moving into earlier lines of care, and recent studies show that step-up dosing and the first full dose of some bispecifics can be given safely in the outpatient setting at significant cost savings.^1,2

But these same studies show that monitoring is necessary, and the senior author of one study involving epcoritamab in lymphoma, for example, told AJMC that a caregiver’s presence is the first consideration when deciding whether a patient receives the first full dose of the bispecific in the inpatient or outpatient setting.

A Growing Recognition, From Patients and Physicians Alike

“When I was diagnosed in 2005, there was really no attention [paid] at all to the caregiver,” Brian said. By the time he received CAR T, the need for the caregiver was recognized, “but it was more a tactical need—we need someone to be in the room with the person 24/7, and we don’t have the nursing staff to do this.”

With today’s therapies, “We’re doing this on an outpatient basis instead of an inpatient basis. So somebody’s got to be that caregiver.” For too long, Brian said, the operating principle was: “Here’s a set of instructions. And by the way, this is a tough job, but you’re up to it. You’ll get through it.

“Subsequent to that, there’s been a recognition of the importance of a caregiver, not only for CAR T but for all types of therapy, as well as the emotional battles that the caregiver has to go through,” Brian said.

Not all caregivers are created equal, which is apparent in physician decision-making. During a discussion at the annual Community Oncology Alliance conference in late April, Michael Byrne, DO, FACP, the medical director for cellular therapy for OneOncology, shared the patient-caregiver calculus he uses to judge whether CAR T-cell therapy can be offered in an outpatient setting.

“They have to be candidates for outpatient therapy, which means they have to be a good candidate by themselves with a so-so caregiver,” Byrne said. “[Or] they have to be a so-so candidate with a great caregiver, or we can usually get the so-so candidates with so-so caregivers through if they live close by.”

This fits with the Koffmans’ story of one trial investigator, whom Patty learned assessed a patient’s likelihood of success based on who else came to the office. “If that patient comes in alone, he’s more worried about the prognosis for that patient,” Brian said. “But if that patient comes in…with somebody else who’s taking notes or asking questions, he’s reassured that that patient is going to remember what happened in that conversation that’s going to go over everything.”

Brian is the first to credit his wife with her role in his successful outcome. Yet, he said, “The caregiver is never in the limelight. It’s always the patient. Nobody walks in and says, ‘How are you doing?’ to the caregiver.”

For Both Patient and Caregiver, “The Stakes Are Very High”

When Brian received CAR T, he had been living with CLL for a dozen years; he and Patty had cofounded the CLL Society to fill in the information gaps they experienced in their own search for treatments. When they first learned about CAR T, they were researching options for other patients; Patty said it didn’t appear Brian would be a candidate.

As the Koffmans learned, patients receiving CAR T-cell therapy must have a 24/7 caregiver—a spouse, partner, adult child, parent, or friend—who can stay with the patient to take their temperature, watch for adverse effects (AEs), manage medications, and help with daily tasks for at least 4 weeks after the patient is infused with a custom therapy made from their own engineered T cells, which are modified to attack the cancer.

Signs of CRS mean the treatment is working, but that isn’t always a comfort to the person watching symptoms unfold in real time.

“CAR T therapy had been on our radar for quite a while,” Patty said. “It seemed wondrous, it seemed magical. It was the furthest thing from our awareness that he would, in the future, actually be involved in a clinical trial for CAR T-cell therapy.”

But then, Brian was out of remission—and out of options. And he was eligible for a trial.

As Patty would learn, no amount of education—not even from the world’s best experts—can prepare a caregiver for the emotional roller coaster ahead.

Like others in the trial, the Koffmans stayed at a hotel near the infusion center after the treatment while Patty kept tabs on Brian’s vital signs and monitored symptoms. “From a caregiver’s point of view, this pumps up your adrenaline,” she said, describing the “hyperalert” state that took hold as she recorded Brian’s temperature every few hours.

“Even though we were only one block away, a caregiver has to be present,” she said. “The caregiver functions as the eyes and ears of the medical team when the medical team is not present…. But I’m not a medical person, so that was a tremendous strain on me, because his well-being was in my hands.

“In this case, the stakes are very high,” she continued. “If he spikes a fever and I don’t catch that, we could be in real trouble very, very quickly.”

Patty was glad to have had the education on what to expect, and when symptoms emerged, Brian went to the hospital to receive medications to manage CRS. Their daughters arrived to give Patty a break, and one even corrected the “gibberish” Brian had written for his regular blog post for the CLL Society.

Once Brian was hospitalized with CRS, Patty got some sleep in the hospital, too. She tried to rise early when the care team came in the morning so she could soak in all the information they shared. “I would wake up in a fog, and what I was thinking in my own mind was, ‘These are the most experienced people—probably among the most experienced people in the country—and I should listen to what they’re saying and offer my opinion if I’m asked.’ But I was in a very vulnerable position because I was incredibly sleep deprived,” she said.

Much Has Changed in CAR T Management in the Past Decade

When Brian received CAR T in the trial, he had one goal—to live. As a physician, of course, he understood that other patients would benefit from what scientists learned about managing CRS through his experience.

At that time, “There was not a lot of understanding about CRS,” especially in CLL, Brian said. “Now, I benefited in that I wasn’t the first patient. There had been patients before me, and they knew what drugs to use, but they weren’t quite sure how to use them and when to use them. And the experiences with patients like me and some of the very serious conditions I went through—some of the pain, confusion, and CRS that I went through—other patients won’t have to go through that, because they learned that’s not necessary.

“But at that time, they didn’t know that,” he said. “They were very worried that if we knock back the CRS too soon, we might kill off the CAR T cells, and you wouldn’t get the benefit. We know better than that now, but we didn’t know that then.³ So I’m very happy that I contributed to that science. I would have much preferred to have CAR T a couple years later when that was all worked out, but I didn’t have that option. When you need it, you need it.”

Today, evidence shows that prophylactic use of tocilizumab with CAR T-cell therapy can prevent AEs in certain high-risk patients without reducing efficacy, and the same is true with certain bispecific antibodies.^4,5 For patients who receive certain bispecific therapies, institutions may give patients “pocket dex,” or small supplies of dexamethasone, to take at home before coming to the hospital if AEs emerge.

Despite recognition that a caregiver’s presence clearly matters—and is indeed a make-or-break factor in access to therapy—the quality of caregiving during both CAR T and bispecific antibody administration remains an understudied area. A 2021 study did find a link between depression among caregivers and lower performance status, as well as higher rates of intensive care admission, suggesting that attention to caregiver well-being has implications for both patient outcomes and costs.⁶ There is hope that digital monitoring can take some of the burden off caregivers by providing a direct flow of information to the patient’s care team. A 2025 review article points to areas for future study, suggesting the use of specialty palliative care as a way to support caregivers of patients receiving CAR T.⁷

“The importance of the caregiver is being increasingly recognized,” Brian said, and within the CLL Society, “We have a support group for patients without partners, because we recognize that if you don’t have that, the whole journey is entirely different.”

Patty said that for caregivers, it’s essential to lean on the care team for information specific to the procedure, medication, or clinical trial. For patients with CLL, she described the CLL Society as a “powerhouse of information,” but emphasized that it is specific to that disease.

In reaching other caregivers, Patty is hopeful but never one to sugarcoat things.

“It’s very hard to prepare people for what they’re going to feel like,” she said. “It’s a lot easier to say that when we use this medication, when we tend to get this result, and we get that result. This isn’t that kind of a science. It’s an intuitive thing. And I hope that by my speaking, I can describe how I feel and the challenges that I had, and the second thoughts that I had. I hope that it reaches some caregivers out there so that they can feel that they are not alone.

“But I have to tell you that when a patient goes through something like CAR T therapy, the caregiver is riveted to their success, to what’s in front of [them]. We don’t have time for outside thoughts. We don’t have time for anything else. We will deny ourselves everything to not miss a trick,” she said. “We’re grateful—we’re especially grateful, in retrospect, that people came in to support us, but the only thing that we’re seeing or hearing is what is happening with the patient.”

Editor’s Note

Patty Koffman and Brian Koffman, MDCM (retired), DCFP, FCFP, DABFP, MSEd, cofounded the CLL Society following Brian’s 2005 diagnosis with CLL.
Patty has been her husband’s caregiver throughout his cancer journey, notably during his treatment with CAR T-cell therapy in a 2018 clinical trial.

Patty will be a panelist at AJMC’s annual conference, Patient-Centered Oncology Care, being held September 24-25, 2026, in Nashville, Tennessee. She will appear on the panel, “No Caregiver, No Cure: Supporting Those Who Ensure Cancer Treatments Reach Patients in Need.” To learn more and register, visit: https://bit.ly/432wdfV

References

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4. Stolz SM, Musa A, Bachofner A, et al. Prophylactic tocilizumab prior to infusion of CD19 CAR T-cells reduces therapy-related complications in older lymphoma patients. Ann Hematol. 2025;104(8):4149-4155. doi:10.1007/s00277-025-06511-x
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