Georgia Institute of Technology (Georgia Tech) researchers have produced a striking study revealing the lengths patients need to go to secure funding for advanced personalized medicines, such as CAR T. The study’s authors investigate the use of crowd funding for two types of blood cancer and associated expenses to access investigational clinical trials.

Led by bioethicist Aaron Levine at Georgia Tech’s School of Public Policy, his work was funded by a grant of near $20 million that established CMat in 2017 and is a pioneering investigation into patient use of crowdfunding to access FDA-approved cell therapies and state-of-the-art clinical trials.

The Study

Levine and his associates from Georgia Tech uncovered 143 CAR-T crowdfunding campaigns with the average campaign targeting $61,622 (median 10,000) to support payments for the advanced therapy access as well as travel costs, living expenses, etc. The actual average amount raised via crowdfunding was $13,259 per campaign. Success with the campaign appears to be correlated with those that were most broadly harnessed across social media platforms. In the case of the three largest campaigns, Facebook was used to share the campaign more than 5,000 times each. The three largest campaigns raised nearly half of the total $1.9 million raised.

Awareness

Study lead Levine sought to raise awareness of this emerging trend—the cost of some of these life saving drugs are beyond the reach of many and patients are increasingly resorting to innovative and in some cases desperate measures to access these drugs.

Levine notes “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.” Levine overall wasn’t surprised by the outcomes due to the nature of health access in America with still a good many patients who lack insurance or who are underinsured.

High Cost of FDA-Approved Therapies

The two CAR T-cell therapies approved by the FDA including 1) Yescarta (Kite/Gilead) and 2) Kymriah (Novartis). The U.S. price tag for Yescarta is $373,000. Kymriah costs $373,000 to treat adults with advanced lymphomas while it hovers at $475,000 to treat children and adults with lymphoblastic leukemia.

Lead Research/Investigator

Aaron Levine 

Source: The Lancet Oncology

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