Imagine a cancer therapy that literally poked holes in cancer cells, destroying them. Imagine that this therapy was approved by the federal Food and Drug Administration and was available to patients and their oncologists, and that it could cure your cancer. We imagine you would expect patients to clamor for this treatment, but this is where the imagination falls short, because this therapy exists and is approved, but it is not widely used.
This treatment is chimeric antigen receptor T-cell therapy. That’s a bit of a mouthful, so it’s commonly known as CAR-T therapy. We all have T cells; these are the part of our immune systems that find and kill abnormal cellular invaders, including cancer cells. Often when cancer develops, it’s because cancer cells either overwhelm the T cells or aren’t recognized by them.
In CAR-T therapy, your doctor extracts your T cells from your blood and sends them to a lab where they will be genetically modified so they can better recognize lymphoma cells when they are returned to your bloodstream. Once in the body these modified T cells find cancer cells and physically destroy them. It is remarkably effective in putting patients into long-term remission from their blood cancer, and may even cure them. It improves quality of life and extends it.
Last fall, we led a stakeholder summit that the Lymphoma Research Foundation convened in Washington, DC that explored why many patients eligible for this remarkable treatment aren’t getting it. Only 20 to 25 percent of eligible patients get CAR-T therapy, even though it’s been FDA-approved for nine years. Years of health and wellness are potentially being left on the examination table.
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The summit found a number of reasons for this. They include:
- Lack of knowledge of CAR-T therapy, including that it exists
- The time and expense of such therapy, both of which can be significant
- The necessity of a family member or care partner to travel and stay with the patient during treatment
- The relatively small number of accredited CAR-T treatment centers
- Delays caused by health insurance prior authorization requirements, lack of familiarity by many oncologists and the lack of treatment centers
Those are problems, but we believe every problem is an opportunity for a solution. Even so, some of these problems are significant.
For example, CAR-T therapy is still very expensive, to the tune of about $1 million, and that doesn’t include the costs of travel and lodging for both the patient and a care partner near treatment centers for weeks. That is real financial toxicity, and for many people it carries more weight than how well the treatment works. We both are well aware of this; one of us works in a major cancer research center in one of the biggest cities in the world and the other is in a less populated area that serves a large section of the country where patients can’t easily get this treatment near home.
Even when insurers pay, reimbursement can be slow. And patients who need treatment like this are not people with time on their sides. In addition, some people will need treatment for severe side effects; this can be a sign the treatment is working, but it can be scary to go through.
These kinds of issues have presented themselves when other then-new treatments arrived for other conditions, but adoption of CAR-T seems to be lagging behind the timelines of previous new therapies. Part of that is because lymphoma is a rare and complex disease with many subtypes.
But help exists. The organization we work with, the Lymphoma Research Foundation, as well as many other advocacy organizations, are a source of support with everything from education programs to financial aid to peer support groups for those dealing with lymphoma and virtually every cancer type. Patients need to know help is available.
It’s a new world. The pace of new therapies has accelerated, and people need access to those therapies. Getting the right treatment at the right time can reduce the rounds of chemotherapy or immunotherapy that they have to endure. To be clear, the right time for CAR-T therapy to be most effective is early, before trying other therapies.
It’s time for all involved, including researchers, health care providers, insurers, foundations and more, to think about creating innovative finance systems so that people can afford to get treatment that will give them back their lives. We must come up with a different way to distribute the costs so that people don’t have to trade a medical disaster for a financial one. And we need to increase awareness among oncologists and among patients while increasing the number of centers able to safely provide CAR-T.
These are challenges and we have to meet the moment. But the progress we have already made convinces us that we will find a way, and that imagination will not fall short of the moment.
This article is discussed on The Podcast by KevinMD: A cure for aggressive lymphoma exists, and most patients never get it.
This essay is cited in the KevinMD record on cancer.
Manali Kamdar, MD is an associate professor and the clinical director of lymphoma services at the University of Colorado Anschutz. Paolo Strati, MD is an associate professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston. They co-chaired the Lymphoma Research Foundation’s CAR T-Cell Therapy Stakeholder Summit in Washington, DC in September 2025.
The Lymphoma Research Foundation is the nation’s largest nonprofit organization dedicated exclusively to lymphoma. It provides trusted information, expert-led educational resources, and community support to people affected by Hodgkin and non-Hodgkin lymphoma, including patients, caregivers, and clinicians.
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