Making ends meet with multiple myeloma
Treatment can be expensive, but help and resources are available
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Today, Jan. 26, is the first day of tax season here in the U.S. Last week, our accountant emailed her annual reminder to collect the many forms that go with our tax return, along with documentation of expenses. So I have to do something I’ve been putting off: the annual update of the medical expense spreadsheet I started after my multiple myeloma diagnosis in 2019.
I know I should update it throughout the year. One of these years, I might actually do that.
If you have multiple myeloma, you know it’s not cheap. A 2021 report in JAMA Network Open put the incremental lifetime cost of myeloma for Medicare patients at nearly $185,000!
Spreading the cost over the year
The study found that prescription drugs are the biggest driver of costs for patients in the continuing care phase of the myeloma journey. Revlimid (lenalidomide) is one of those high-cost drugs; I’ve seen patients report copays in the thousands of dollars. That can mean meeting your insurance deductible or even your total out-of-pocket maximum before winter is over.
But that can be a lot of money to fork out in a short time, especially if you’re on a limited income. According to a recent report in the Journal of Clinical Oncology, the cost may keep some patients from sticking to their treatment or, in some cases, from starting it at all.
There is an option for Medicare patients whose out-of-pocket prescription drug costs are capped at $2,100. The Medicare Prescription Payment Plan (M3P) spreads the cost over the entire year, instead of loading it into the first few months. The recent report notes, “M3P converts these often-unaffordable one-time payments into predictable monthly installments,” and this predictability “mitigates cost shocks and may preserve critical cancer care access.”
Right now, you have to opt into M3P. The report’s authors suggest automatically enrolling patients who face high costs early in the year.
Other options
I don’t qualify for Medicare yet, and so far, my employer-based insurance has covered everything. If that changes, I have some options, starting with the pharmaceutical companies. For example, Bristol Myers Squibb, the maker of Revlimid, offers copay assistance for patients with commercial insurance.
There are also several programs available through charitable foundations. The best-known may be Blood Cancer United, formerly known as the Leukemia and Lymphoma Society. It offers a slate of financial assistance programs, not only for copays but for travel and even a one-time $100 stipend to help with non-medical expenses.
The Patient Advocate Foundation (PAF) also has a copay fund, as well as a National Finance Resource Directory with a neat search engine. For my age, state, diagnosis, and insurance status, it returned an interesting list of nearly 200 resources for medical and prescription costs. One of the resources is for gamers with cancer! That might be another column in the future.
Healthwell is another foundation that offers financial assistance for copays, premiums, and more. Eligibility is based on income.
Each of these foundations has an application process, and not all the funds are open at all times. As I write this, Healthwell’s Medicare Access fund for myeloma is open, but the myeloma funds at Blood Cancer United and PAF are closed.
Don’t forget tax deductions!
U.S. tax law allows you to deduct many medical costs if they exceed 7.5% of your adjusted gross income (AGI). Office visits, prescriptions, hospital stays, insurance premiums, and even mileage to and from treatment may qualify. There are exceptions. A tax consultant can help you determine what qualifies, and the Internal Revenue Service even has free help for eligible filers.
So far, our medical expenses have never reached 7.5% of our AGI. But I will check as I always do. One of these years, it may help us get a little more back!
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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