Caregiving Catches Fire: How a Critical Need Is Showing Up in Research, Legislation, and the National Conversation

Three years ago, Gerald Hollowey used the men’s room at work, and the sight of blood in his urine stopped him cold. He called his wife, Alishia, to drive him to the emergency department; surely, he must have ruptured something. But after a CAT scan and an MRI, the couple was told that Gerald needed to see a urologist. It might be cancer.

“I was just floored,” said Gerald, a 26-year Navy veteran from Norfolk, Virginia, who had survived kidney cancer only a few years prior. “Now, you're talking [that] I may possibly have bladder cancer?”

And so, the odyssey began. Three rounds of surgery. Two failed rounds of therapy. Weekly trips to the hospital, with days away from work for both Gerald and Alishia. Until finally, Gerald was put on his current treatment, nadofaragene firadenovec (Adstiladrin; Ferring Pharmaceuticals).¹ The gene therapy, given through a catheter every 90 days, has been a game-changer. Not only is the drug keeping Gerald cancer free, but the couple is no longer tethered to a weekly treatment schedule—and they are thinking about taking a dream vacation to an island resort.

Things look brighter today. But as the couple sat side by side in an interview, the low points were still fresh.

Gerald started on BCG, a standard-of-care therapy that failed to halt his cancer. Alishia recalled the crushing blow of being at the hospital all day once a week, “hoping and praying that it was working, and then they said it wasn't.”

At that point, Gerald’s former physician raised some extreme options. Alishia said, “When they talked about the bladder removal, that was probably the one day that I was like, ‘Whoa, this is like, bigger than what I thought it would be.’”

For America’s 63 million caregivers,² whether their loved one has cancer or another disease, bigger than they thought it would be increasingly sums up the experience—in time, costs, or days off work. The needs of caregivers, especially those in the “sandwich generation” caring for both parents and young children, are increasingly part of the national conversation.

Caregiving Breaks Through as a Major Policy Concern

Gerald’s cancer journey ultimately took a positive turn. Still, as he and Alishia told Evidence-Based Oncology (EBO), that outcome doesn’t erase all it took to get there.

Alishia, who had taken at least 1 day a week off work for weeks in a row, is among the millions of family caregivers who have moved this issue from a policy afterthought to center stage—and she considers herself fortunate compared with others. Much of the focus has been on long-term care. In the 2024 presidential election, then-candidate Donald Trump proposed a tax credit of up to $5000 per year to cover these costs, whereas then-Vice President Kamala Harris sought to fold them into Medicare.^3,4 A bipartisan bill to implement President Trump’s plan⁵ has been introduced alongside a half-dozen other pieces of legislation, which address everything from retirement planning for family caregivers, to data collection about caregiving, to the specific needs of caregivers for those with Alzheimer disease.^6-10

As 2026 arrived, caregiving rippled through an economy in which affordability has become a central theme of the midterm elections. Catalyst reported that 42% of the women who left the workforce voluntarily in the first half of 2025 said that caregiving demands, mostly childcare, drove their decision.¹¹

Other breakthroughs have been at the level of public consciousness. In 2023, The New York Times and KFF collaborated for the series “Dying Broke,” about the cost of long-term care for families, most of whom were dealing with a loved one with dementia.¹² Then in November 2025, Times opinion writer Michelle Cottle caught fire with her essay, “The Comedy and Horror of Becoming My Parents’ Keepers,” which spoke not only to dementia but also to the very different nature of caregiving in cancer—how the sudden onset of intense medical, housing, and daily living needs becomes a tangled bundle, which adult children must navigate with or without cooperation from a parent who may have appeared healthy just weeks ago. As she wrote, “Caring for an aging loved one is a journey—and not a low-key pleasure trip with a clear itinerary you can plan and pack for.”¹³

One group that has worked to elevate the caregiving agenda is AARP, which issued major reports on the topic in 2025 and again in 2026, when it pegged the value of family caregiving at $1 trillion.^14,15

“Family caregivers are really holding up our long-term care system,” Megan O'Reilly, JD, vice president, Health and Family, Government Affairs at AARP, said in an interview. “The advocacy agenda that we've put forth at the federal and state levels really is informed directly by the interaction with our members and families all across the country, and I put it into 2 areas.”

First, she said, there is “the economic side of caregiving. On average, caregivers are spending about $7200 out of pocket each year, and for many, it's much higher than that.” In turn, AARP supports the bipartisan federal bill as well as state-level bills that offer tax credits to offset these costs.

Second, she said, “the other space that we've been really involved in is navigation. We often say time is money. And when you're a caregiver, and you're navigating the health care system for your loved one, at the same time, we know more and more people are sandwich-generation caregivers. They're caring for children. They're helping to care for an aging parent. How do we make it easier for caregivers?”

O’Reilly offered an example of an adult child trying to assist a parent who has failed to designate someone to act on their behalf with Medicare. “If you have to call Medicare on behalf of your parent, how do we make that easier?”

Less than a month after Cottle’s essay, Senator Andy Kim (D, New Jersey) offered a first: His maiden address on the Senate floor would highlight how his father’s diagnosis with Alzheimer disease had put him in the same category as so many other young fathers: caregiver.¹⁶

On the day he learned the bad news, Kim had to return to the Senate floor, where he deferred when a colleague asked to discuss a bill. He felt overwhelmed.

“Instead of walking away, my colleague stayed, showed me comfort,” Kim said, “opened up about their own struggles and challenges in their family. And I responded with my growing fear about the uncertainty that lay ahead, that I would be forced to seek not the best care that my father can get, but instead the best care for my father that my family could afford.”¹⁷

An Issue That Touches Everyone: Caregiving Needs Are Bipartisan

Kim’s experience—both as a son and caregiver, and as a Senator juggling the needs of his state with a family crisis—is becoming more common as members of Congress join the ranks of those with parents or spouses facing medical crises. What’s more common today, O’Reilly said, is that we hear about it.

“Increasingly, you’re hearing people share their stories,” she said. “There’s just a real sense of connection—across the experience, across the issues, and the challenges that people are facing—we see that with lawmakers and again with their staff.”

The bipartisan nature of the issue was seen on May 13, 2026, when the Senator Rick Scott (R, Florida), Kirsten Gillibrand (D, New York) when the Senate Special Committee on Aging held the hearing, “Caught in the Middle: Supporting Families in the Sandwich Generation” about the needs of those caregivers.

The interest also translates into multiple pieces of federal legislation in the 119th Congress, most of them bipartisan, including the following:

• Credit for Caring Act of 2025 (HR 2036). This bipartisan bill codifies Trump’s 2024 campaign promise by creating a nonrefundable federal tax credit equal to 30% of qualified caregiving expenses above $2000, capped at $5000. This bill has more than 80 bipartisan cosponsors.⁵
• Social Security Caregiver Credit Act of 2026 (HR 8490/S 4396). This would credit unpaid family caregivers 80 hours or more per month for caring for a dependent relative with deemed Social Security wages for up to 5 years, addressing concerns about retirement coverage gaps for this group. This bill only has Democratic sponsorship.⁶
• Similarly, thebipartisan Catching Up Family Caregivers Act of 2026 (S 4291)allows full-time family caregivers to claim up to 5 additional years of maximum catch-up contributions in employer retirement plans.⁷
• Multigenerational Home Caregiver Credit Act (S 3295/HR 7610). These identical bipartisan bills offer credits to promote living arrangements of older adults in the same home with adult children. A separate bill, HR 7584 (Multigenerational Family Tax Credit Act of 2026), offers credits to make the home more accessible.⁸
• Convenient Care for Caregivers Act (S 3234). This would amend the Older Americans Act to pilot support programs for caregivers of those with Alzheimer disease or related disorders.⁹
• Multigenerational Caregiving Data Act (S 4513/HR 8792).This bipartisan legislation directs the federal government to close a major data gap by adding questions to at least one major federal population survey to identify unpaid sandwich-generation caregivers.¹⁰

Caregiving has also become a state-level issue; states that have amended their paid family or medical leave expansion laws in the past year include Maine, Delaware, Minnesota, Virginia, California, and Tennessee.^18-23

But Cottle, in her essay, and others note that much of this is undermined when foreign-born workers who make up the heart of the paid caregiving workforce are being forced out by administration immigration policies, which could leave some families without help or disrupt nursing home care so much that others will have to make new plans for their loved ones. Kate Smith Sloan, CEO of LeadingAge, which provides staff for nursing homes and elder care services, told PBS that the Supreme Court ruling to end Temporary Protected Status could cost her agency up to 30% of its staff, and that some facilities might have to close a wing.²⁴

Severing ties means taking away the person who knew what a patient would eat, or which music they liked to hear, she said. “When you take that worker away, you're taking not only a job, but you're breaking an absolutely critical relationship.”²⁴

Medicaid Work Requirements. On the regulatory front, the long-term effect of Medicaid work requirements under the One Big Beautiful Bill Act on caregivers remains a concern, despite a reprieve that AARP won under the CMS interim final rule released in June.²⁵ Under the current language, CMS would require that certain adult Medicaid enrollees log 80 hours a month of work, school, or volunteering. However, family caregivers who provide regular, ongoing assistance to individuals with disabilities or specific care needs are explicitly exempt from these mandatory work hours. The guidelines draw on the definition from the RAISE Family Caregivers Act of 2018.²⁶ Final comments were due as EBO went to press.

O’Reilly said the language includes a broad definition of family caregiver. “In some cases, caregivers will be outright exempted. Other times, their caregiving time will be counted toward work requirements,” she said. “The interim final rule really spoke to the family caregivers in that exemption in a way that was responsive to what AARP was advocating for.”

Caregiving and Cancer Care: Recent Results

Recent successes, including CMS reimbursement for patient navigation and for caregiving education, come at a crucial time in cancer care.²⁷The movement to deliver more bispecific antibody and chimeric antigen receptor (CAR) T-cell therapies on an outpatient basis means ease of access will depend in large measure on whether the patient has a competent caregiver. In the case of bispecifics, that may be someone who can be available for a few days, but for CAR T-cell therapy, the caregiver or caregiving team will need to be on hand for up to 4 weeks. Pilot projects are evaluating how technology can assist family caregivers in this process.

Since EBO began its focus on caregiving in cancer in February, the importance of caregivers to patient access has only become more evident. At a session of the Community Oncology Alliance spring conference, Tennessee Oncology’s Michael Byrne, DO, described an algorithm that balances the patient’s fitness with the caregiver’s skill when assessing whether to give CAR T in the outpatient setting.²⁸ In early April, Jeff Sharman, MD, discussed the EPCORE-NHL-6 study (NCT05451810) that led the FDA to approve administration of epcoritamab (Epkinly; AbbVie/Genmab) for diffuse large B-cell lymphoma in the outpatient setting. He said the most important factor in deciding where a patient should receive treatment is whether they have a competent caregiver.²⁹

Rising interest in the role of caregivers is seen on PubMed, where research citing the term “family caregiving” jumped 27% from 2024 to 2025. Presentations at the recent meeting of the American Society of Clinical Oncology (ASCO) featured a range of data sets, including the following:

• How financial burden impacts patients’ perception of caregiver burden³⁰
• How mindfulness can help caregivers cope after caring for a patient treated with allogeneic hematopoietic stem cell transplant (HSCT) (NCT05078229)³¹
• Although a more than 25- year-old validated measure designed for caregivers exists,³² a study from Moffitt Cancer Center showed how use of the National Comprehensive Cancer Network Distress Thermometer could allow for rapid identification of highly distressed caregivers of patients receiving HSCT.³³

Caregiving comes up even when it is not the main focus of a trial, such as the OpTEC-OpTAL results (NCT05972135), which showed that a single dose of prophylactic tocilizumab reduced cytokine release syndrome (CRS) during outpatient delivery of the Johnson & Johnson bispecifics teclistamab (Tecvayli) and talquetamab (Talvey) in multiple myeloma.³⁴

In response to questions from EBO, presenter Peter Forsberg, MD, a member of the Myeloma Research Executive Committee, Sarah Cannon Research Institute at Colorado Blood Cancer Institute, discussed the role of the caregiver in the study during ASCO and in the community administration of these therapies.

“Our protocol required caregiver support for 48 hours after step-up and first full dosing. Our remote monitoring was very modest; we required twice-daily temperature and pulse oximeter monitoring, no fancy devices. With this, dosing was safe and stable,” Forsberg said. “I believe caregiver support is probably the most important tool to enable safe outpatient startup dosing beyond use of prophylactic medications like tocilizumab. Our hope is to come up with the most accessible approach possible, and caregivers are a key component of this.”

When asked how he evaluates how a caregiver will handle the responsibility, Forsberg shared a concern heard often among clinicians handling outpatient administration of bispecifics: The fear of CRS is typically worse than what is seen in practice.

“We didn’t require very strict characteristics for caregivers who were supporting patients on trial. In reality, most caregivers enter that role with some degree of worry about what might be needed from them,” he said. “Our experience has been that almost all caregivers do great, and that we don’t need highly complex monitoring or management expectations to have safe outpatient startup dosing with prophylactic tocilizumab. For patients without an accessible caregiver, there may not be an adequate current alternative, and these are probably patients who are best served by inpatient startup dosing.”

“You Have No Idea What the Other Person Is Going Through”

After his initial diagnosis, Gerald Hollowey had his first surgery to remove the tumor, which was found to be high-grade non-muscle invasive bladder cancer. Then came BCG, which has been the standard first-line treatment in early-stage bladder cancer for more than 40 years. Typically, the initial BCG course lasts 6 weeks.³⁵

Alishia described the routine for treatment days. “I would take off work, and we would pack our lunch, and we would be in there pretty much from 9 am until about 3, but they would need to watch [him] for an hour,” she said. “So, by 4 o’clock, we were out of there….That's a lot [of] being in a hospital every week.”

Then Gerald’s cancer came roaring back.

When his first physician suggested bladder removal, the couple went to see a specialist at Urology of Virginia. At that time, the new surgeon was able to remove most of the recurring cancer. “When I woke up, my wife said they found 25 tumors, and they removed all of them except for one,” Gerald recalled. “That’s when I started with Dr [Michael] Williams, and he's been my doctor ever since.”

Next came chemotherapy. “It was pretty much the same,” as the BCG routine, Gerald said. “I would have a lot of bladder spasms, leakage, and a lot of pain,” when each treatment ended. Yet through all this, both Gerald and Alishia worked several days a week. Gerald is a production superintendent at the Mid-Atlantic Regional Maintenance Center, which handles repairs and maintenance of US Navy ships. Alishia is a management analyst for the Department of the Navy.

“They would give me a note…because I would go [for chemotherapy] on a Wednesday, and they would give me a note to telework Thursday and Friday,” he said. “Then Monday I would go back to work, and everything would pretty much be back to normal.”

For Gerald, the low point came shortly after learning that chemotherapy had failed, too.

Gerald found out 2 close friends from the USS Fresno, who had slept in the same berthing area that he did, had died from bladder cancer. He’d been in touch with a mutual friend and asked about fellow shipmates.

“What happened to Bailey?” Gerald asked. This friend shared that Bailey had renal failure and heart issues. Gerald had been trying to reach another shipmate named Swanson, and he called a different friend, who told him that Swanson had died.

“You ain't gonna believe this,” the second friend said. “Swanson and Bailey both passed away from bladder cancer.”

Although a link has not been confirmed, Gerald has previously expressed concern that diesel exhaust in the berthing area of the USS Fresno could be linked to his cancer.³⁶ Ships built during the same period as the tank landing cruiser, commissioned in 1969, have been linked to illnesses caused by asbestos, which was in widespread use before the 1980s.³⁷

“I'm blessed, because I'm here,” Gerald said, holding back tears. “I’ve got 4 kids, and I’ve got 10 grandkids. I had 9 grandkids at the time; now I’ve got 10. And that just makes it even more important for me to fight.”

Starting Adstiladrin has turned things around. For both patient and caregiver, the stress is now largely compressed into those drives to the hospital every 3 months, when they learn whether the gene therapy is still working. If there’s any sign of tumor growth, Williams can remove it for testing, Alishia said.

Gerald credits his wife’s knowledge, her ability to pick up details on the scans, and her overall steadiness. Alishia insists she’s “not a pro at this,” but that she tries to keep things “as normal as possible,” while offering support with tasks such as keeping track of appointments.

When you’re not the person with cancer, Alishia said, “You have no idea what the other person is going through. So, I didn't want to be, ‘Oh, all is lost,’ and I'm breaking down every 5 minutes.”

Still, “It’s been like a roller coaster ride,” she said. “The ups and downs of it [are] the biggest part for me, because I try to keep a positive attitude…. I do a lot of praying. I have a strong faith in what God can do, and that's what's worked for me.”

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