Straight Talk From a Caregiver: Without Us, Cures Don't Reach Patients

When Patty Koffman’s husband, Brian Koffman, MDCM (retired), DCFP, FCFP, DABFP, MSEd, received chimeric antigen receptor (CAR) T-cell therapy in 2018, one of the more traumatizing moments came not during the treatment, but before it began.

One of her husband’s physicians told Brian he would come through fine. But then, the physician turned to her.

“He said, ‘Patty, I need to direct this to you.’ Then he listed all the horrible things that could happen, and said, ‘Patty, I'm pleading with you. No matter how bad he looks to you, don't ask me to pull the plug. I can bring him back.’”

Patty Koffman, who cofounded the CLL Society with her husband,¹ shared that memory September 24 at Patient-Centered Oncology Care® (PCOC), during a panel titled “No Caregiver, No Cure: Supporting Those Who Ensure Cancer Treatments Reach Patients in Need.” Brian Koffman, whom she has seen through an unsuccessful bone marrow transplant, early trials of the Bruton tyrosine kinase inhibitor ibrutinib (Imbruvica; Janssen), CAR T, and now the bispecific antibody epcoritamab (Epkinly; Genmab/AbbVie), was in the audience. “I'm happy to say that he's 21 years out and doing really well,” she said.

Moderator Angie Maynard, PharmD, MS, CPGx, assistant professor of pharmacy practice at Lipscomb University in Nashville, Tennessee, outlined what is expected of today’s caregivers: As CAR T and bispecific antibodies move into outpatient and community settings, caregivers now function as “the eyes and the ears for the care team.” They track vital signs, looking for the first whispers of cytokine release syndrome (CRS) and immune effector cell–associated neurotoxicity syndrome (ICANS). Caregivers—most of whom lack formal medical training—must make the call when it’s time to head to the emergency department.

Training, Checklists—and Who Gets Turned Away

Across the American Oncology Network (AON), caregiver requirements are written into the eligibility process when these therapies are given, said Brooke Peters, PharmD, a clinical pharmacist for the network. “We’ve not only defined patient characteristics for the appropriate patient for outpatient therapy, but also caregiver requirements. It's actually part of our checklist. What does an appropriate caregiver, competent caregiver, look like for these patients?”

To prepare, the caregiver joins the advanced practice provider (APP) for initial drug education, Peters said, and then gets hands-on training from the chairside nurse after the first dose, “so they know how to check the vitals, and how to document their findings in the chart that we provide for them.”

What happens if a patient is clinically eligible for therapy, but the caregiver doesn't meet the bar? Asim Ahmad, MD, a medical oncologist/hematologist from The Center for Cancer and Blood Disorders, who practices in Fort Worth and Arlington, Texas, argued for assessing “a caregiver's capability, not necessarily their pedigree.”

"If a patient can’t take off for a month, the question shouldn't be, ‘Is this patient done?’ It should be, ‘What can we do as a community center to construct a safe plan that provides observation, communication, transportation, and rapid access to care during these periods of risk?’ If we can accomplish this safely through the use of family, friends, professional support, and health care systems, I don't think these social circumstances alone should disqualify a patient.”

Thomas LeBlanc, MD, chief patient experience officer at Duke Cancer Institute, said he sees the problem from the referring side, as a myeloid malignancies specialist who sends patients to transplant, which may be their only path to a cure.

“I often feel like too many people get turned down for transplant because of these kinds of caregiver or social-related barriers. It's not that the patient isn't healthy enough; it's that they don't have enough financial resources, or they don’t live in the right place, or they don't have somebody who comes to their appointments,” he said. “It's often said, ‘no caregiver, no transplant,’ and our health care system, our reimbursement structures, don’t have the capability to provide everything that a person needs to get a transplant if they don't have that person with them. So, this is the biggest structural barrier today, unfortunately.”

Paid caregivers are rarely the answer, LeBlanc said. Transplant colleagues worry they “might not show up, and if they disappear 32 days into an [allogeneic] transplant, that patient can have a life-threatening complication and die because they're alone.”

What matters, he said, is that patients receive care from someone with “skin in the game.”

Maynard, whose practice site is the city-funded cancer center at Nashville General Hospital, said social drivers of health shape referral decisions there. “If we have an unhoused person, where are they? Are they going to be able to come back? Likely not.”

Ahmad cautioned against treating CAR T and bispecific caregiving as interchangeable. CAR T is “a single high-intense period” that brings caregiver fatigue, he said. With bispecifics, caregiver requirements “can decrease significantly” following step-up dosing, as the risk of CRS and ICANS diminishes.

“We Are Your Vital Link”

Koffman, reading from notes, reframed caregivers as partners not only to patients but to industry. She recalled a CLL specialist telling the CLL Society that when a trial patient arrives without a caregiver, “I'm concerned that that patient won't make it.” Enthusiasm fades after 9 months or a year, adverse effects mount, and patients start missing appointments.

“That's where you need a caregiver. The caregiver will come in and say, ‘Wait a minute! You can't do that. I'm holding you accountable.’”

One of today’s caregiving challenges is that the family member may be unable to share the burden. In cancer and beyond, AARP and other organizations point out, families members may live far part, and there are now fewer children to manage the needs of aging parents. Although more men are caregivers than in earlier generations, data show daughters still bear most of the burden.² In an era where there are more live-saving therapies than ever, who has access may come down to who has a family member available to monitor vital signs and run point with insurers.²

From her years as an advocate, Patty Koffman seemed to be aware of these points.

“We are also strong care partners for the pharmaceutical industry and for the people who are on the front lines of clinical trials,” she said. “We are your vital link. We are your very best friends. Just look at how we behave. We respect your protocols. We handle your products with care. We keep the users of your products, who are our patients—we keep them alive. We keep them upbeat. We keep them on schedule. We banish their loneliness when they get down and they want to give up.”

LeBlanc said caregivers also keep patients honest. “Often the patients come in and put on their best face, and they get dressed up, and they don’t want to disappoint their doctor,” he said. “But the caregiver says, ‘Hey, tell them about what happened when you fell yesterday.’ And we want to know that. We need to know that.”

Caregivers Are “Conscripted”

Koffman did not sugarcoat what the caregiving demands. “Many caregivers feel that they were conscripted for the job because they were,” she said. “Now, you have a new job for which you have no training. There are no defined hours. There’s absolutely no pay, and somebody’s life depends on how well you do that job. So that’s why we need to be trained.”

“You will not get to eat a lot of your meals. You will not get to sleep a lot of the time. And God willing, this will go on for a very long time, because that means that you are doing a very good job, and the patient is getting better,” she said. “We stay at our post. We very rarely desert. But I want you to know that we’ve made a lot of sacrifices. We suffer a lot of personal losses. There is a continual and consistent erosion in the quality of our lives, and like the patient, we are in mourning for the life that we had before.”

LeBlanc called caregivers “the forgotten members of the team” and found Koffman’s sue of the term “conscripted” to be highly accurate. His group's research shows caregiver anxiety, depression, and distress “pretty strongly correlate with how well their person is doing.”

A 2026 secondary analysis of 186 patient-caregiver dyads in a trial of integrated palliative care during hematopoietic stem cell transplant found that individual caregivers’ quality of life tracked their patients' quality of life over 12 months.³ Earlier work with older caregivers after hospital discharge found caregiver and patient wellness were connected and identified communication with health professionals as a challenge.⁴

LeBlanc warned the caregiver pool is shrinking as families get smaller and scatter geographically. “We really have a long way to go in health care to better support the people who are really doing the hardest of this work every day at home, between the hour that we see them every 3 weeks in the clinic. That's when all the hard work and the real work is happening, and we're just not doing a great job, honestly.”

Koffman offered a pair of suggestions. First, she said, caregivers need real training. She described the nurse hurrying her along while showing her how to do the PICC line during Brian’s transplant. “She said, ‘OK, you got it,’ and I said, ‘I haven't had any time to practice.’” And her second recommendation is that pharma should fund caregiver training and education through advocacy organizations. One industry leader told The American Journal of Managed Care® afterward they agreed.

Technology Won't Replace a Person

Ahmad said remote monitoring and artificial intelligence (AI) tools can help fill gaps as caregiving fragments. Peters, who said, “I have 3 sons, so I have learned today that I'm going to be in trouble,” was less optimistic. “That barrier is always going to be present,” she said. Remote monitoring “is not going to remove the need for a person to be there,” and a hired caregiver may not know the patient's baseline well enough to spot neurologic changes. AON partners with CanCare to pair caregivers with peers who have been through the same therapy.

“I thought AI was just going to solve this,” LeBlanc joked. “The caregiver robot.”

From the audience, Scott Soefje, PharmD, noted that remote strategies assume everyone has a phone and internet; his in-laws still use dial-up. Koffman said the CLL Society faced exactly that when the pandemic moved its support groups—now more than 5000 people monthly—online. The organization bought computers for members who lacked them and had staff train them. “I know it seems very old school, but that's what we did.”

References

1. Caffrey M. The CAR T caregiver: “never in the limelight,” but critical to access. Am J Manag Care. 2026;32(Spec 5):SP180-SP182.
2. Caffrey M. As cancer caregiving becomes more complex, start-up offers solutions to demographic cliff. Am J Manag Care. 2026;(Spec 2):SP82-SP84.
3. Yang D, Troy JD, Branchaud B, Herring KW, El-Jawahri A, LeBlanc TW. Longitudinal associations between patient and caregiver quality of life following hematopoietic stem cell transplantation. J Clin Oncol. 2026;44(suppl 16):12087. doi:10.1200/JCO.2026.44.16_suppl.12087
4. Schwartz AJ, Riedel RF, LeBlanc TW, et al. The experiences of older caregivers of cancer patients following hospital discharge. Support Care Cancer. 2019;27(2):609-616. doi:10.1007/s00520-018-4355-2