CAR T-cell therapy has some patients crowdfunding to cover costs
Aletta Weiss plans to undergo chimeric antigen receptor T-cell treatment for relapsed large B-cell lymphoma, and she’s turning to GoFundMe for help.
According to information on her donation page, Weiss, of South Berwick, Maine, is asking for $13,000 in donations through the online crowdfunding platform not because of a lack of insurance or to cover part of the cost of therapy, which she will receive at Massachusetts General Hospital. Instead, the money would fund accommodations for her and her husband in Boston before and after treatment and offset lost wages from missing work during their stay.
Brenda Velez received CAR T-cell therapy for relapsed acute lymphoblastic leukemia as part of a clinical trial at University of Pennsylvania. Velez, of Westminster, California, created a GoFundMe page to raise money for the cost of travel across the country and for lodging during the nearly month-and-a-half she spent in Philadelphia before and after her CAR T-cell infusion. She didn’t anticipate having to return to the trial site every 3 months for 2 years, per the trial’s protocol. As a result, her GoFundMe page continues to collect donations to help cover the costs.
Crowdfunding is hardly a new concept; for years, people have raised funds for others in need. Instead of electronic transfers, old-fashioned crowdfunding relied upon coin-collection jars and a bit of legwork. The digital age had enabled anyone facing financial difficulty because of medical costs to create awareness of their cause and rally those in their community and beyond to help meet their needs.
Against a backdrop of rising health care costs, CAR T-cell therapy is perhaps the most brilliant example of just how expensive cutting-edge treatments can be. A search for “CAR-T” at gofundme.com returned more than 3,000 hits, and it appeared most patients in need of this therapy were not seeking help with the price of treatment, but to cover the ancillary costs that accompany it. These included travel expenses, lost wages and insurance copayments, which can add up to tens of thousands of dollars and are not typically covered by insurance.
Coverage for the treatment itself varies depending on a particular payers’ policy, with many payers providing coverage on a case-by-case basis or, in the case of Medicare, a pre-negotiated percentage is reimbursed based on CMS rules. Regardless of how much an insurance provider pays if CAR T-cell therapy is approved, there are often additional expenses related to the therapy that become the responsibility of the patient.
Covering the extras
The use of online crowdfunding to access CAR T-cell therapy was the topic of a recent perspective in The Lancet Oncology. This may not seem surprising, given that the two FDA-approved CAR T-cell therapies — axicabtagene ciloleucel (Yescarta, Kite/Gilead) and tisagenlecleucel (Kymriah, Novartis) — starting at $373,000 for a single treatment. The cost of administering either treatment has been estimated to more than double the price tag when factoring in post-treatment inpatient hospitalization and treatment for adverse events.
While conducting a larger, still-ongoing analysis of CAR T-cell therapies, Aaron D. Levine, PhD, associate professor in the School of Public Policy at Georgia Institute of Technology and co-director of engineering workforce development at NSF Engineering Research Center for Cell Manufacturing Technologies, came across a large number of GoFundMe pages dedicated to raising funds for CAR T-cell treatments. Levine, a co-author of the perspective, had studied the growth of unproven cell therapies — including many stem cell treatments — where crowdfunding was commonplace, and his group was intrigued by how the same methods were being used to access CAR T-cell therapy, which has established clinical efficacy for patients with heavily pretreated cancers and few remaining treatment options.
“There’s been a lot of attention in stem cell policy to crowdfunding, particularly for what we call unproven stem cell therapies sold by a network of hundreds, if not thousands, of clinics directly to consumers and not usually covered by insurance,” Levine told HemOnc Today. “[These therapies] lack proper evidence, typically of efficacy and often of safety as well.
“CAR-T, on the other hand, has some phenomenal data in clinical trials and is being developed in the right way,” Levine said.
This is in contrast with many of the unproven stem cell treatments for which GoFundMe pages have been established. Unlike these snake-oil therapies, CAR T-cell therapy has gone through the clinical trial process and, typically, is not marketed directly to consumers.
“By and large people weren’t trying to raise the full cost of this treatment but a portion of it, and very frequently an ancillary cost of participating in a clinical trial,” Levine said.
A small snippet of the data his group collected gives insight into crowdfunding for CAR T-related costs. Levine and colleagues identified 143 new GoFundMe campaigns to raise funds for CAR T-cell treatments over a 15-day period in 2018. The average campaign goal was $61,622 (median, $10,000) and the average amount raised was $13,259 per campaign. Nearly half of the CAR T-cell campaigns (49%) sought support for medical expenses, whereas 44% solicited funds for travel costs, 42% for housing and living expenses, and 29% for lost wages.
Levine said the purpose of the perspective was to raise awareness among researchers and clinicians of the financial challenges facing patients who pursue CAR T-cell therapy.
“Clinicians need to be aware that this therapy, while promising, is forcing at least a subset of patients to turn to an alternate source of funding, and that they really ought to think about the economics and how they talk to their patients about this,” he said.
The preliminary findings from his team’s study are unfortunate but not at all surprising, according to Levine, who said it’s no secret that many Americans are either uninsured or, more frequently, underinsured.
“Even in the case where you have very good insurance, this points out that there’s a whole host of other costs associated with cancer care,” he told HemOnc Today.
“This very advanced, personalized form of cancer care requires going to specialized treatment facilities and a long manufacturing process to get to the point of treatment. Some of this is probably unavoidable early in the development of this therapy,” he said.
Although insurance may cover the direct cost of the treatment, there’s often little support for other costs to make it realistic for patients to get this care, Levine added.
“As the field develops and we hopefully go from two approved CAR T-cell therapies to many more treating a wider array of indications closer to the front lines, there needs to be some improvement in the delivery mechanisms, making this more accessible, so that patients are treated in a wider array of centers and the follow-up monitoring time is reduced so people aren’t away from home quite as long,” he said.
Clinicians should be empathetic to the patient’s predicament when it comes to discussing and deciding whether to go forward with CAR T-cell treatment, either in the commercial or clinical trial setting, according to Otis W. Brawley, MD, MACP, FASCO.
“I always encourage physicians, as well as health care administrators and all health care providers, to try to understand the position that their patients are in,” said Brawley, professor at Johns Hopkins University and Sidney Kimmel Comprehensive Cancer Center, and a HemOnc Today Editorial Board Member. “As our treatments get more expensive,” he added, “CAR T is an especially good example because this is a true specialty treatment that people have to travel for.”
Plight of the underinsured
When reading the number of GoFundMe campaigns related to CAR T-cell therapy presented in Levine’s research, Brawley sounded exasperated, calling it a phenomenon of the middle class and working poor.
“I hear about this time and time again,” he told HemOnc Today. “This is just another of the many stories of people who need a particular treatment are unable to afford it. In this case, I have a suspicion that the disparities are affecting the underinsured even more so than the uninsured.”
Brawley said that the research being accumulated on crowdfunding to help pay for these treatments adds to the evidence base that many people in the United States are underinsured.
“Even in the era of ‘Obamacare’ and the Affordable Care Act, where supposedly everyone must have insurance, there’s a substantial number of people who find that when they need to use that insurance, they are underinsured. Then, of course, the insurance still does not pick up a lot of the cost of obtaining medical care.”
Brawley joked about the cost of parking at the Johns Hopkins campus in Baltimore. It may be amusing anecdotally, but it’s a serious cost to consider for patients facing enormous financial difficulties in addition to fighting cancer.
“It’s expensive to be sick, and many of the expenses are nonmedical. I’ve come to the belief that we in the United States must totally rethink how we provide health care,” Brawley said.
“I see the political discussions about insurance and Medicare for all. That’s not the whole answer.”
Brawley added that the data presented by Levine and colleagues is “especially sad” because, in the case of CAR T-cell therapy, it’s a potentially curative treatment for patients who have endured years of therapies that have failed to keep the cancer away.
“Oftentimes you hear about the $15,000-a-month treatment that people are having difficulty getting for a drug that has been FDA approved because it prolongs median survival by 2 to 3 months,” Brawley said. “CAR T is a treatment that can actually cure a cancer and people are having difficulty getting it.”
Levine acknowledged that CAR T-cell therapy is not yet ripe enough to be efficiently delivered health care, and that undoubtedly inflates the overall costs and financial burden for patients.
“It’s hard,” Levine said. “This is an intense therapy and the patients can be really, really sick after treatment, so you want to be at a high-quality facility with experienced providers. Hopefully, over time, we get better management of the side effects or better ability to predict who’s likely to suffer the side effects and there can be an improvement in how these treatments are delivered.” – by Drew Amorosi
Ho LD, et al. Lancet Oncol. 2019;doi:10.1016/S1470-2045(19)30466-8.
For more information:
Otis W. Brawley, MD, FACP, can be reached at 1550 Orleans St., Suite 1M16, Baltimore, MD 21287; email: email@example.com.
Aaron D . Levine, PhD , can be reached at School of Public Policy, Georgia Institute of Technology, 685 Cherry St., Atlanta, GA 30332-0345; email: firstname.lastname@example.org.
Disclosures: Brawley and Levine report no relevant financial disclosures.