Financial Toxicity

Financial toxicity.

As a former caregiver to my husband who had multiple myeloma, and as a financial advisor, I feel it is very important to share information that will be invaluable to you as you go through your journey.

I wish I had known much of this before we were going through his illness. I was fortunate that because of my background as a financial advisor, we were able to navigate many of the financial challenges.

My goal today is to introduce you to a relatively new term, financial toxicity, what it means, and how to mitigate potential damage it may cause.

In medicine, financial toxicity is used to describe problems a patient has relative to the cost of treatment. Financial toxicity is also called economic burden, economic hardship, financial burden, financial distress, and financial stress.

Cancer patients are more likely to have financial toxicity than people without cancer, simply because of the duration and complexity of the disease. In fact, studies have shown that people diagnosed with cancer are two and a half times more likely to declare bankruptcy than those without cancer.

Additionally, financial toxicity can cause treatment non-adherence and lifestyle changes that negatively affect the quality of life and increase morbidity and mortality.

Even with a heightened awareness of financial toxicity in our healthcare centers, why is it still a glaring problem?

Perhaps because most cancer centers have staff who are dedicated specialists who address financial toxicity. But unfortunately, often it is a responsibility added to another job description, or the staff has not been properly trained, or they are overworked and lack the incentive, or even have the resources to address fully the financial concerns that patients will experience at onset and with ongoing treatment.

But why is the topic of financial toxicity important for every one of you? Because like most cancers, myeloma is complicated, and care is very expensive and it requires long-term treatment.

Therefore, it is imperative that you start planning as soon as possible for the financial and time commitments that are involved. Even if you are well into the process, there are still things you can do to mitigate financial toxicity.

First, if you haven't already, identify a family member or friend that can accompany you to your doctor's appointments. This person should be willing and able to keep notes of your visits and help you remember key information and key dates. They can also ask questions that you may not remember to ask.

I cannot stress this point enough. Many families are embarrassed to talk about money. After all, finances aren't something we are readily willing to share with anyone, and less than 40% of doctors ask patients about their financial ability to cover the cost of cancer care.

Therefore, it is very important to ask upfront about the cost of treatment and don't wait until you are in a financial crisis.

It is a fact that none of us know what changes may be coming from new laws that will affect the cost of care. We hear the arguments every day about threats to change preexisting conditions, coverage, or possible reductions and coverage limits.

So all the more reason it is important for you to know ahead of time options that you currently have or may have available should coverage change.

So keeping in mind that there are some things you cannot control, let's review some of the things that you can.

Understand your diagnosis and the current treatment plan, as well as a possible duration of your treatment plan. Talk to your doctor, the social worker and/or patient advocate. Find out what the treatment plan will be and the associated costs.

Then call your insurance company. Keep notes again as to whom you spoke with, their name, date, and the time, and what you spoke about. You may have to refer to this later.

What kind of medical insurance do you have? Private pay? Employer plan? Medicare? Medicaid? What do they cover? What are your copays and deductibles?

Do you have the option to change insurance plans to get better coverage based on your treatment plan? For instance, you may have spouse coverage, state insurance exchange plans. Do you need to review your Medicare plan or possibly add a supplemental plan?

Keeping in mind the enrollment period, there is a lifetime plan coverage amount. Do you need to review your Medicare plan or possibly add a supplemental plan? Keep in mind the enrollment periods. Is there a lifetime plan coverage amount? What is it?

These are additional topics that will be discussed in later videos.

If you have terminated your plan or plan to terminate your employment due to your illness, well, you have the option to enroll in COBRA. Do you understand COBRA and the associated cost? Do you have options outside of COBRA?

If you are currently employed, do you have disability insurance? Disability insurance is income protection insurance. This coverage can help replace a portion of the money you may lose if you cannot work due to illness or injury.

Do you have the option to enroll in short-term and/or long-term disability through your employer? Disability insurance provided through your employer is generally taxed because the employer is picking up the bulk of the premium.

If you do not have a plan, you may be able to enroll in one at your employer's next enrollment period. Most employers offer short-term and/or long-term disability. Usually, the short term starts with the first day of disability and goes for a few months or more.

If you have long-term disability, it will start after the short term has ended. Employer-provided disability will be taxed at your income tax rate. Rarely does a short or long-term disability plan offer more than 66% of your income. These plans may also coordinate with Social Security disability.

Do you have a private disability insurance plan? If so, the income benefit to you is not taxed.

The great thing about this is you will be replacing more of your income because you are now paying the premium.