Managing Financial Costs of Multiple Myeloma

Medically Reviewed by Sabrina Felson, MD on June 25, 2022
Written by Kendall K. Morgan
5 min read

If you or a loved one has multiple myeloma, you’ll have more treatment options now than ever before. These new treatments mean you’re likely to live twice as long with myeloma now than someone with it 10 or more years ago. Most people find out they have multiple myeloma when they are over age 60 – the average age is 70 – and you could live another 5 to 10 years or more.

As survival with multiple myeloma has gone up, so has the cost of treatment. When you have myeloma, you’re likely to need ongoing treatment. There will be other costs if you need to spend time in the hospital. That means the costs of your treatment and care can keep adding up over time. So it’s important to understand your costs, your insurance if you have it, and where you can turn for help.

Some studies have looked at this, and the short answer is: a lot. Cancer treatment and care in general cost a lot. But multiple myeloma is more costly than many other cancers.

One study looked at health care costs for more than 7,000 people who had multiple myeloma from 2000 to 2014. It showed the cost of treatment for this group went from more than $3,200 per month in the year 2000 to more than $14,000 per month in 2014. Those figures were for those who were newly diagnosed.

The increase in costs during this period wasn’t just from new myeloma medicines. As people with myeloma lived longer, they also had costs from:

  • Emergency room visits
  • Doctor visits
  • Lab tests
  • Imaging
  • IV services
  • Hospital stays

A study looking at costs of treatment for people whose multiple myeloma had come back or wasn’t responding to treatment compared seven treatment plans for myeloma. The goal was to compare the costs of them.

The total cost of treatment ranged from $126,000 to $256,000 per year. Only one treatment combination cost less than $125,000 per year. In general, new treatments tend to cost more. That doesn’t mean you shouldn’t get new treatments if your doctor says you should. Those new treatments also are why people with multiple myeloma are living longer.

Another study looked again at costs of multiple myeloma treatment based on Medicare claims from 2006 to 2016. It found that the average lifetime cost increase when you have multiple myeloma was about $185,000. Some people whose myeloma doesn’t respond to other treatments can now get a type of cell therapy called CAR T-cell therapy. You wouldn’t normally get this multiple times. But a single infusion of CAR T-cell therapy costs more than $400,000.

Your costs may follow a U shape. That means costs often will be highest at first before they get lower. Costs often go up with each recurrence and again at the end of life.

For example, the study found the average costs for people with myeloma were:

  • About $1,200 per month before diagnosis
  • About $11,000 per month early in treatment
  • About $5,500 per month in the continuing care phase of treatment
  • About $6,300 per month in the final phase

The reason for this was that visits to the doctor or hospital happen more early and late. When you’re in treatment for multiple myeloma and doing well, your medicines are the main cost.

Most people in the U.S. with myeloma are 65 or older when they learn they have it. So most of the treatment for multiple myeloma gets paid for by Medicare. If you have private insurance, it’s important for you to understand your plan and what it will cover. Experts say you should contact your insurance company directly by phone.

If you don’t have health insurance or your health insurance isn’t going to cover enough of your treatment, you can get a new plan through the Affordable Care Act. You can’t be charged a higher rate or denied health insurance because you have multiple myeloma. Depending on how much money you make, you might be able to lower your costs.

Your insurance status may affect your treatment and how well you’ll do. One study found that people with myeloma didn’t do as well if they were either uninsured or had Medicaid. But your health insurance shouldn’t determine whether you’ll get the treatment you need.

You can find groups and programs to help you with different parts of your care. For example, some drug companies have assistance programs. Other programs can help if you need to travel for your treatment. You can get advice from others who’ve been through it by connecting to mentoring programs and cancer networks.

If you can’t work anymore because of your multiple myeloma, you might also be eligible for Social Security Disability Insurance (SSDI). SSDI is an insurance benefit for people who have worked and paid into Social Security. Your income won’t affect whether or not you can get SSDI. It will depend on whether you’ve paid into Social Security and meet its definition of disability. You can find out more about this at www.ssa.gov.

It’s important that you talk to your doctors if you’re worried about the cost of treatment. Your doctors and/or social workers at the hospital can help you find out about organizations or programs to help. The National Cancer Institute has a database full of organizations that offer various kinds of support when you have cancer. This includes financial support. The key is to ask questions and let people know about your financial concerns, so they can help you find assistance and relief.

Keep in mind that the exact cost of your treatment and care will depend on which therapies your doctor prescribes and how you do with them. The amount you’ll pay out-of-pocket will depend on your insurance and other things. Don’t hesitate to ask your care team about your costs and how to get help managing them.

Here are some steps you can take to make sure you have the best coverage you can, given your myeloma and treatment:

  • Make sure you’re seeing a doctor who is in-network or accepts your insurance.
  • Find out if your insurance will cover second opinions.
  • Insurance can’t limit your total cost, but it may limit the number of services. Make sure you understand these and try to avoid those limits, if possible.
  • Check with myeloma organizations and your doctor about all the various tests and procedures you’ll need. If your policy won’t cover what you’ll need, you may need a new policy.
  • If your insurance denies you coverage or you know a test or procedure you need isn’t covered, ask your doctor if they can write an appeal. You shouldn’t assume that because you were denied coverage at first, you can’t get it covered.
  • Ask your insurance company for a case manager. This way, you’ll have someone you can talk to any time you have a question.

Be sure to talk to a social worker, either at the hospital or through an organization such as CancerCare, or both. They can help you navigate your financial concerns and connect you with resources to help. They also can help you manage the stress that comes with them, so you can focus on your health.