Join the Myeloma Community to Find Financial Resources & Learn to Advocate for Yourself

Did you know that advocating for yourself can reduce your out-of-pocket medical costs? Let's review many of the associated costs and look at ways you can actively manage a lot of these costs.

The costs of myeloma treatment can really add up. Myeloma is cancer that you will probably be treated for a long period of time. Consequently, you will need to be prepared to successfully manage the associated cost for an extended period of time in addition to meeting your normal everyday expenses

According to an article in cancer.net, it was estimated that 32,270 adults in the US were diagnosed with Myeloma in 2020. Myeloma not only takes a toll on the health of patients and survivors, but it also causes a tremendous negative financial impact.  Many of the medications used do not have biosimilars (a biosimilar is a biologic medical product highly similar to another already approved biological medicine) and they are extremely expensive. Until generics are introduced in the marketplace, patients will continue to bear the burden of the high cost. One, in particular, Revlimid, costs approximately $23.317 for a 28-day supply. Not surprisingly, the deductible could be crushing even after one or two months.

The Disparity in the Burden of Costs and Contributing Factors

It isn’t surprising that because of the cost of cancer treatment many patients and families find themselves depleting savings, delaying or forgoing treatment, and possibly facing bankruptcy. This becomes more poignant when the cancer patient and or caregiver may have to stop working which in turn reduces income. Some factors that make a patient more likely to face financial hardship are individuals who are: 

• younger
• people of color
• less educated 
• lower-income 
• uninsured or underinsured

However, overall, there are a few immediate actions one can do to help reduce the burden.

• Educate oneself about the disease
• Take advantage of private, federal, and foundational grants that can help lighten the financial burden
•  Above all, make sure you are insured with the best insurance coverage you can afford

We previously discussed contributing factors to the cost of healthcare such as premiums, co-pays, deductibles, insurance status/type of insurance, co-insurance, out-of-pocket maximums, in-network vs out-of-network, surprise or balance billing, as well as the treatment plan, geographic location, and treatment setting. There are also types of treatment costs: surgery, radiation, pharmacological therapy, stem cell transplants, clinical trials, blood transfusions, perhaps supportive or palliative care, rehabilitative therapy, mental health services, nutrition counseling, and the lists go on and on. Don’t forget the multiple healthcare providers and specialists providing their services, as well as accidental costs such as travel and lodging for care.  As overwhelming as this can be, there are financial resources that can help you pay for your care and stay on track with your cancer treatment.

Steps you can take to be active in managing your care from a financial perspective

Don't be surprised when after moving through these steps you become less stressed, and more empowered to ask the questions you need throughout the continuum of your care.

1. Learn as much about your myeloma as you can. Finding this out from the start and continually updating yourself on the status of your cancer can allow you to better understand the associated cost allowing you to be proactive in taking appropriate measures. The HealthTree Cure Hub is an excellent tool for educating yourself. Join this community and find a large and ever-expanding depository of articles and educational tools and financial resources to help you on your way to becoming an active participant in managing your treatment with your healthcare team. You can come away with the information to ask questions about current and possible future treatments as well as to inquire about treatment options and costs.
2. Review your insurance at least annually to determine if you have the appropriate overage for your treatment. Be aware that currently there is a special enrollment into the Affordable Care Act (ACA) as a result of many people losing their jobs due to COVID 19. It extends from February 15th through May 15th.  Also, take some time to review your Medicare insurance, as coverage of medicines can change. You may also want to look at additional coverage if you are covered through your employer and are Medicare age. Lack of insurance, as well as inadequate insurance coverage, is the biggest cause of financial stress. If you have concerns or questions, reach out to a Myeloma Coach with financial experience who can help guide you.
3. Review your daily expenses. This is necessary because if the cost of your care increases, you will need to find additional money elsewhere. Be mindful of your discretionary dollars and how, where, and why you're spending. It's easy to get in the habit of buying something when we're bored. Especially now when all of us are spending more time indoors. Know that impulse spending gives you only a temporary sense of happiness. The emotional effects of spending on frivolous things you really don't need do not compare to the stress you'll have when needing funds for the things you really need and not have it available.
4. Know that you have many kinds of tools and resources available to you. Take the time to join the Myeloma Community to find the support and financial resources you need and learn to be your best advocate.

Statistics adapted from the websites of the American Cancer Society and the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program (sources accessed February 2021)

If you would like more guidance on finances and myeloma consider joining the Myeloma Crowd Community Financial Coach Chapter. This chapter meets monthly to provide information on a variety of financial topics. The next meeting will be held on March 2 at 11:00 a.m. MT and will be providing a briefing on Benefits for Veterans. There are also Myeloma Coaches (who are myeloma patients or caregivers) available with experience navigating the financial impact of myeloma.  

Find or become a myeloma coach