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Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

Click the orange button to the right to learn more about what you can start doing today.

CAR-T therapy is EXPENSIVE!!!

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CAR-T (Chimeric Antigen Receptor T-cell) therapy holds a great deal of promise for the treatment of multiple myeloma. Unfortunately, CAR-T therapy is expensive. This is another post in PeopleBeatingCancer’s efforts to illustrate financial toxicity of cancer in general and multiple myeloma in particular.

Like most any treatment decision that the MM survivor chooses to make, FDA approved or not, as long as the patient understands the risks and benefits, pros and cons  of the treatment, he/she is free to make any decision they want.


What are the risks and benefits of CAR-T therapy for the treatment of multiple myeloma?

Benefits:

  1. Highly Targeted Treatment: CAR-T therapy is designed to specifically target cancer cells by modifying the patient’s T-cells to express chimeric antigen receptors (CARs) that recognize and bind to proteins on the surface of cancer cells. This targeted approach can potentially minimize damage to healthy cells.
  2. Potential for Long-term Remission: Some patients treated with CAR-T therapy have achieved durable remissions, even in cases of advanced or refractory multiple myeloma. This offers hope for long-term control of the disease.
  3. Alternative for Refractory Cases: CAR-T therapy provides an alternative treatment option for patients who have not responded to other standard treatments, such as chemotherapy, targeted therapy, or stem cell transplant.
  4. Single Treatment: In many cases, CAR-T therapy involves a single infusion of modified T-cells, as opposed to ongoing chemotherapy or other treatments. This can reduce the frequency of hospital visits and treatment-related side effects.

Risks:

  1. Cytokine Release Syndrome (CRS): CRS is a common and potentially serious side effect of CAR-T therapy, characterized by an excessive immune response that can lead to high fever, low blood pressure, and organ dysfunction. While CRS is usually manageable with supportive care, severe cases may require intensive medical intervention.
  2. Neurological Toxicity: Some patients may experience neurological side effects, including confusion, seizures, and delirium, as a result of CAR-T therapy. These symptoms can range from mild to severe and may require close monitoring and treatment.
  3. Immune-related Toxicities: CAR-T therapy can cause autoimmune reactions, where the modified T-cells attack healthy tissues in addition to cancer cells. This can lead to various immune-related toxicities, such as inflammation of the lungs, liver, or kidneys.
  4. Risk of Relapse: While CAR-T therapy has shown promising results in inducing remission, some patients may experience disease relapse over time. Further research is needed to understand and address the factors contributing to relapse and to develop strategies to prevent it.
  5. Long-term Safety Concerns: Since CAR-T therapy is a relatively new treatment approach, the long-term safety and efficacy of this treatment in multiple myeloma patients are still being evaluated. There may be unknown risks associated with the long-term persistence of modified T-cells in the body.

When I was first diagnosed with multiple myeloma I simply ignored the mail that arrived regularly from my insurance company. Boy was that a mistake.

If you are considering CAR-T therapy sit down with your certificate of coverage or summary of benefits or whatever book sent by your health insurance company that explains what is covered and try to figure out what CAR-T therapy will cost you.

Are you a MM patient? Have you relapsed once, twice or more? If you would like to learn about evidence-based non-conventional integrative therapies send an email to David.PeopleBeatingCancer@gmail.com

Hang in there,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers

“Since 2017, six CAR T-cell therapies have been approved by the Food and Drug Administration (FDA). All are approved for the treatment of blood cancers, including lymphomas, some forms of leukemia, and, most recently, multiple myeloma.

Despite the excitement around these therapies, they lead to long-term survival in fewerExit Disclaimer than half of the patients treated. They have also come under criticism for their cost, which, in the case of the most recently approved CAR T-cell therapy, is more than $450,000.

How to Pay for CAR T-Cell Therapy

“CAR T-cell therapy is a powerful treatment for relapsing-refractory multiple myeloma. It’s a form of gene therapy, which means that it changes the DNA of some of your cells. This helps boost the immune system so it can better recognize and fight cancer.

Although it’s not a cure, CAR T-cell therapy can help you get to remission (no signs of cancer) and live longer. But it has serious risks and is CAR-T therapy is expensive. It’s only used if other therapies haven’t worked. Here’s an idea of what it costs.

How Much Is CAR T-Cell Therapy?

CAR T-cell therapy is expensive and can cost over $500,000. What it’ll cost for you or your loved one mainly depends on: 

  • Your specific needs 
  • The specific product 
  • The treatment center 
  • If you have side effects

The costs can be broken down into these categories:

The CAR T-cell product. This is the process and formula used to make your personalized CAR T cells. The cost generally ranges from $373,000 to $475,000.

Hospitalization. CAR T-cell infusions are usually done in an inpatient treatment center, but there are specialized outpatient centers that do it, too. This part of the bill depends on how long you stay at the medical center if you go the inpatient route and the services you receive. It ranges from $23,000 (outpatient) to $53,000 (inpatient).Monitoring and management. CAR T-cell therapy can trigger serious side effects, so you may need additional treatments to treat them. This can cost up anywhere from $30,000 to $56,000.If you don’t live near a treatment center, you might have additional expenses like travel and hotel stays.

How to Check Your Insurance Coverage for CAR T-Cell Therapy

Not all health insurers cover this therapy, but most will cover some of the costs. Coverage may depend on the product and the treatment center. For example, your insurance plan might only cover certain drugs delivered at certain treatment centers. Usually, you’ll still be responsible for your deductible, co-pay, and other costs. 

To avoid surprise bills, check your out-of-pocket costs before starting treatment. You’ll want to:

Review your policy. Double check deductibles, copayments, and out-of-pocket limits. See if your insurance company has a list of in-network providers they cover.Call your insurance company. Confirm CAR T-cell therapy coverage and/or the associated costs, such as:

  • Hospitalization fees
  • Monitoring with blood tests and imaging scans
  • Additional treatments to manage or prevent side effects

Ask if you need prior authorization for this procedure. Some insurance companies also have case managers to help you plan for expenses.

Talk to a financial counselor at the treatment center. They can help you double check insurance coverage, estimate out-of-pocket expenses, and apply for any financial assistance programs or discounts that may be available.

If your insurance denies coverage for CAR T-cell therapy, you have the right to appeal the decision. Support your appeal with additional documentation like medical records, a doctor’s note, and evidence supporting the use of CAR T-cell therapy.

Does Medicare or Medicaid Cover CAR T-Cell Therapy?

Medicare covers it, but Medicaid coverage depends on the state you’re in. The product must be approved by the FDA and the treatment center must be certified by the Centers for Medicare and Medicaid Services (CMS).

How to Get Financial Assistance

Here are some places to start if you need help paying for CAR T-cell therapy:

Raise funds. You can use online platforms (like GoFundMe) or organize bake sales, auctions, and car washes. You should be transparent and honest about your fundraising goals and thank supporters for their generosity.

Contact the drug company. Some drug companies, including the ones that make CAR T-cell products, offer financial aid. 

Look into government benefits. The federal government offers special assistance for some people in addition to Medicare and Medicaid. These include the World Trade Center Health and Medicare Savings Programs.

Research copay assistance programs. These are programs that help with the costs of copayments, coinsurance, or deductibles for cancer treatment. They include the Leukemia & Lymphoma Society’s Co-Pay Assistance Program (Myeloma Fund) and the HealthWell Foundation Multiple Myeloma Medicare Access Program.

Explore patient aid programs. These are programs that help with the costs of living expenses, such as rent, mortgage, utilities, or food. Options include the Blood & Marrow Transplant Information Network’s Patient Assistance Fund and CancerCare’s Financial Assistance Program. 
Look for local help. There are programs that help with the costs of local services, such as transportation, lodging, or childcare. Ask the social worker at your treatment center for recommendations.Go far with travel assistance. These are programs that help with the costs of travel expenses, such as airfare, gas, or parking. They include the American Cancer Society’s Road to Recovery program and Mercy Medical Angels.

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