How to Manage Costs and Get Financial Assistance

CAR T-cell therapy can be expensive, but there are a few ways you can manage costs.

How Much Is CAR T-Cell Therapy?

Experts estimate that CAR T-cell therapy can cost between $500,000 and $1,000,000.

“CAR [T-cell therapy] is the most expensive Medicare diagnosis-related drug,” says Brian Koffman, MD, founder of the Chronic Lymphocytic Leukemia Society. Although new medicines are now available to people with the condition, costs haven’t come down.

Direct CAR T-cell treatment costs may include:

• Apheresis (a process that draws blood and, using a cell separator, collects T cells before returning the remaining blood to the body)
• Biopsies
• CAR T-cell production
• Hospital stays
• Imaging studies
• Medicines

Other related CAR T-cell therapy costs, such as housing and travel, can also quickly add up.

If you have to leave your home to be closer to a treatment center, indirect CAR T-cell treatment costs may include:

• Caregiver support
• Housing 
• Travel

You can only get CAR T-cell therapy at a certified center, and you have to stay no farther than 2 hours away from the center for at least 4 weeks. If you don’t live near a treatment center, you and your caregiver may need to travel long distances for your treatment and pay for temporary housing. You might also lose income if you’re unable to work.

Does Health Insurance Cover CAR T-Cell Therapy?

Many private health insurance plans cover CAR T-cell therapy, but other plans don’t. Some pay limited amounts only. Medicare covers CAR T-cell therapy. Medicaid covers it as well, but only in certain states.

Even if your plan covers CAR T-cell therapy, you may have out-of-pocket costs that aren’t covered, including deductibles and other expenses, Koffman says. For example, your health plan may pay for inpatient stays but not for certain medicines or medical devices.

Before you have CAR T-cell treatment, check with your health insurance provider to see what’s covered and what you are going to have to pay out of pocket. Your medical center may start the process by submitting the required paperwork to your health insurance company. The center may also be able to give you an estimate of your out-of-pocket costs.

Ask your health insurance company if they offer travel and lodging benefits. Although your plan may cover medical expenses, it might not cover the cost of traveling to and staying near a certified center. “This can be quite costly,” says Hollie L. Benson, CAR-T program manager at Mayo Clinic Arizona.

What to Do if Your Health Insurance Company Denies Coverage

If your health plan doesn’t cover CAR T-cell therapy, you can dispute the decision. Contact your health insurance company and find out what you need to do to appeal or dispute its decision to deny coverage.

In most cases, your health plan should cover the treatment if you can prove it’s medically necessary, Benson says. You may need to show your past therapies and have your doctor explain why it’s the right treatment for you.

If you’re having experimental treatment, you may need to share any information that supports CAR T-cell treatment, such as recommendations published in clinical guidelines from groups like the National Comprehensive Cancer Network. Your doctor can help you collect this type of information.

Work with your medical team to appeal a denial of coverage. “Open and early communication will help your team get the right information to your insurance company to quickly address any appeal,” says James Seashore-Ludlow, a registered nurse at Mayo Clinic Arizona.

Where to Find Financial Help

Your doctor and social worker may be able to recommend a program that can help you cover costs for CAR T-cell therapy if you qualify.

Some nonprofit organizations and pharmaceutical companies have financial assistance programs to lower costs for those who are eligible.

For example, the Leukemia & Lymphoma Society’s Susan Lang Pre CAR T-Cell Therapy Travel Assistance Program offers $2,500 to cover treatment-related travel and lodging expenses such as:

• Air transportation
• Ambulance services
• Baggage fees
• Car maintenance
• Car rental
• Gas
• Ground transportation
• Lodging
• Parking
• Repairs and parts
• Tolls

Check the following:

• Leukemia & Lymphoma Society
• Lymphoma Research Foundation
• Drug companies that sponsor patient assistance programs

Ask your doctor about clinical trials, too. Joining a clinical trial may help lower CAR T-cell therapy costs. “Some clinical trials will cover some of the trial expenses. There are also charities that help defer trial costs,” Koffman says.

Tips to Lower CAR T-Cell Therapy Costs 

Take advantage of various resources that may help lower your out-of-pocket expenses. Try these tips from Koffman:

• Talk to a social worker, case manager, or hospital financial adviser. They can help you deal with your health insurance provider to lower your costs. “Sit down with them and take the time to understand what’s covered and what isn’t,” Koffman says.
• Talk to the drugmaker. “Don’t be afraid to ask if they can defer some of the expenses,” Koffman says. They may have programs that can help, especially if you’re uninsured or have private insurance.
• Keep at it. “Be persistent but pleasant with payors,” Koffman says. “This may lead to the best result. Whatever you do, don’t give up.”