Preparing for CAR T-cell therapy

Why a caregiver is important.  Will insurance cover.  How to find medical centers.

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Why is a caregiver important for CAR T-cell patients?

Although highly trained medical professionals will be caring for you during your treatment, a dedicated caregiver – usually a family member or friend - has a very important role to play in your recovery.

Complications after CAR T-cell therapy can start with subtle symptoms that may appear normal to a healthcare professional who does not know you, but will raise alarm bells for someone who knows you well. If you develop symptoms such as fever, confusion or disorientation, it is critical to have a 24/7 caregiver on hand to alert the medical team and get you help quickly.

There are also practical considerations after you are discharged from the hospital:

  • You will not be able to drive a car for at least eight weeks after your CAR T-cell therapy.
  • You may be very fatigued for several weeks or months after CAR T-cell therapy.
  • Chores and work you normally perform may need to be handled by a loved one until you regain your strength and stamina.

​​Ask the medical team if they have literature, videos or classes to train your caregiver about his or her role. Select a caregiver who is not afraid to ask questions, or to speak up if he or she feels something is not going well.

Will insurance pay for CAR T-cell therapy?

Because CAR T-c ell therapy is so new, most commercial insurers are evaluating reimbursement on a case by case basis. Medicare does cover CAR T therapy. Medicaid coverage varies, depending on the state.

Before beginning CAR T-cell therapy, your medical team will contact your insurance provider to determine if it will pay for the treatment.

There will be other expenses that insurance may not cover such as lodging, food, and transportation, even if you are receiving treatment far from home. Talk to your social worker or contact BMT InfoNet at 888-597-7674 or for information about programs that may provide financial assistance for these expenses.

How to find a medical center that offers CAR T-cell therapy

Your local oncologist may recommend a medical center that provides CAR T-cell therapy, or you can search for a Medical Center offering CAR T-Cell Therapy

CAR T-cell therapies currently approved by the U.S. Food and Drug Administration (FDA) are offered at more than 100 medical centers throughout the United States. Click here to find a CAR T-cell therapy program near you.

Several medical centers are investigating different CAR T-cell therapies that have not yet been approved by the FDA. These therapies may be available to you if you agree to participate in a clinical trial testing their safety and effectiveness. To find a list of CAR T-cell clinical trials, phone the Jason Carter Clinical Trial Program at 888-814-8610 or click here.

NEXT:  CAR T-cell Recovery

Reviewed January, 2020 by Alix Beaupierre RN, BSN, OCN; Michael Bishop MD; Nelson Chao MD; Kevin J. Curran MD; Michael J. Frigault MD; Ajay Gopal MD, FACP; Mark Juckett MD;  Kenneth Miller MD; Steven Pavletic MD; Miguel-Angel Perales MD; Michael Pulsipher MD; Craig S. Sauter MD; John R. Wingard MD