Patients Turn to Crowdfunding to Help Pay for CAR-T Cell Therapy

Roxanne Nelson, RN, BSN

July 30, 2019

As the cost of cancer care continues to rise, some patients are turning to alternative means to pay for their therapies. This includes crowdfunding, which has been used as a way of meeting the hugely expensive cost of chimeric antigen receptor T (CAR T) cell therapies.

Two of these products are now on the US market — tisagenlecleucel (Kymriah, Novartis) and axicabtagene ciloleucel (Yescarta, Kite Pharma/Gilead) — and the cost of just the drugs is US $475,000 for pediatric patients with acute lymphoblastic leukemia or $373,000 for adult patients with diffuse large B-cell lymphoma.

On top of that comes a hospital stay after administration of the therapies, which can involve intensive care to deal with adverse events. The fact that these therapies can only be given at accredited centers means travel and stays away from home. These additional costs have to be paid for by the patient/family themselves.

The issue is described in an article published online yesterday in The Lancet Oncology.

"The growth of medical crowdfunding is a symptom of existing inequities in our healthcare system," commented senior author Aaron Levine, PhD, associate professor in the School of Public Policy at Georgia Tech in Atlanta.

"Travel to access CAR-T cell therapy is a big driver of patient crowdfunding, and steps to minimize the amount or duration of travel required to participate in these trials or receive approved CAR-T cell therapies would certainly increase their accessibility," he said.

"One challenge with CAR-T cell therapy thus far is that due to severe side effects, most patients need to stay near the site of treatment for an extended period of time," Levine told Medscape Medical News. "As clinicians get a better handle on how to predict and manage side effects, hopefully these therapies will be available more broadly and fewer patients will need to travel to access them."

Crowdfunding Campaigns

Crowdfunding campaigns have become increasingly popular to pay medical expenses for unproven treatments, such as stem cell–based therapies or otherwise questionable procedures.

However, with the ever-rising costs of healthcare and related expenses, they are being used to raise funding for established treatments, as well as expenses related to clinical trials.  

Even though sponsors of clinical trials generally provide treatment free of charge to patients enrolled in CAR-T trials, travel costs to the host medical center (as well as the cost of lodging there) are out-of-pocket expenses for the patient/family, the authors note.

"There is no good reason that patients should be paying out of pocket to participate in a CAR-T cell clinical trial," said Levine. "I know some companies are covering travel and other nonmedical expenses for participants in these trials, but companies should reassess to make sure their reimbursement policies are generous enough to avoid placing patients into financial hardship due to their participation. And firms that are not providing such support should start to do so."

Once the product is approved, even if insurance covers most of the cost, patients are still responsible for additional expenses, including deductibles, copays, and coinsurance, as well as nonmedical expenses.

Funding for Direct and Indirect Expenses

For their study, the authors systematically searched GoFundMe, which is the most popular crowdfunding website, for English-language campaigns that were related to CAR T-cell therapy. During a 15-day period between October 21, 2018, and November 3, 2018, they identified 143 distinct campaigns and coded each one to identify key characteristics.

The total goal of the 143 campaigns combined was to raise $8.81 million but fell short of that amount. However, they succeeded in raising $1.9 million from 36,182 donations.

The average campaign aimed for $61,622 but ended up with $13,259 from 253 donations. The median campaign goal was for $10,000 and raised $4356 from 39 donations.

The three largest campaigns raised the bulk of funding (with totals of $589,520, $235,449, and $126,582), and these three accounted for more than half of the total money that was raised. This "skewed distribution," note the authors, was also seen in the sharing of campaigns on social media. The average campaign was shared 665 times on Facebook and the median campaign shared 261 times. The three most successful campaigns were shared more than 5000 times each, comprising 39.5% of the total shares on Facebook, and not surprisingly, these three campaigns raised the most money.

The oldest campaigns began in 2014, which was during the early clinical development of CAR T-cell therapy; the crowdfunding campaigns then increased over time, especially after the first product received FDA approval. When the diagnosis was specified, the most common campaigns were for diffuse large B-cell lymphoma (51 [36%]) and acute lymphoblastic leukemia (44 [31%]). The third most common was multiple myeloma (12 [8%]), which is not an approved indication but is being evaluated in numerous CAR T-cell clinical trials. A small number sought funding for other experimental indications, such as glioblastoma.

Crowdfunding was used to raise money to pay for both direct medical and indirect nonmedical costs associated with CAR T-cell therapies. The most common reason for raising funds was to pay for medical expenses (71 [49%]), and this included not only the cost of CAR T-cell treatment itself, but in many cases, pretreatment and posttreatment care. In other campaigns, indirect expenses including travel costs (63 [44%]), housing and living expenses (60 [42%]), or replacement of lost wages (42 [29%]) were targeted.

Overall, crowdfunding campaigns did not provide much information about CAR-T cell therapy. Only a few explained how it works, gave information on risks or benefits, or provided a link for obtaining more about these therapies. The authors note, therefore, that although crowdfunding could raise awareness of CAR T-cell therapy to some extent, it is not a source of detailed information.

"As CAR-T cell clinical trials continue for a range of indications, I expect that crowdfunding to access this promising therapy will become increasingly common," said Levine. "Hopefully this research calls attention to this practice and encourages firms developing or marketing CAR-T cell therapies to take steps to reduce the need for patients to raise funds in this way."

Levine added that he doesn’t think there is any ethical reason that patients shouldn’t be allowed to crowdfund. "There are good reasons, however, to structure our clinical research system and our healthcare system more broadly in a way that eliminates, or at least minimizes, the need for patients to crowdfund," he said.

The material in this study is based upon work supported by the National Science Foundation. Levine reports additional grants from the National Science Foundation during the study period. The other study authors disclosed no relevant financial relationships.

The Lancet Oncology. Published online July 29, 2019. Abstract

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