Explore Every Possibility for Financial Assistance

Receiving a bladder cancer diagnosis is devastating – especially if it’s a metastatic diagnosis or if the bladder cancer that started as early stage disease has spread.

Health insurance has not caught up to science

What can be equally devastating is receiving a bill for a treatment, a surgery, or an emergency room visit. Immunotherapy drugs are providing exceptional results for a subset of patients but they can cost in excess of $100,000 per year. Health insurance protocols have not necessarily caught up to the science. Therefore, it is common for insurance plans to deny coverage for newer or personalized treatments on the basis of insufficient evidence.

When my first husband, Ahmad, was treated for cancer, we were the lucky of the unlucky. We were well insured with multiple layers and types of insurance that helped us immensely. If you were lucky and organized enough to buy insurance policies, now is the time to draw upon those. Even if you don’t have much insurance, though, there are resources out there for cancer patients.

Financial toxicity

The financial challenges facing cancer patients are so pervasive and significant that oncology conferences often dedicate one or several sessions to the “financial toxicity” of cancer treatments. What is a bladder cancer patient and his or her family to do?

This is one of many areas for which you need to build a bladder cancer research team of friends and family who can help you find help. Explore every avenue because you may be surprised. Below are some examples from my own experience.

Which doctors are available to you?

We were in an H.M.O. that required us to choose a primary care physician (PCP) and a medical group. Our choice of doctors was limited to that medical group linked to the PCP. But we soon realized that we had the right to change our PCP each month. This meant we could access doctors in other medical groups by changing our PCP rather than going “out of network” or paying out of pocket. This was a cumbersome solution but given that we were dealing with cancer, it was worth the hassle when we wanted to change doctors. Most plans, regardless of type, allow for a second opinion outside of your current medical group. Take advantage of this benefit.

Help for patients with metastatic disease

Metastatic bladder cancer is a diagnosis that will qualify you for help not available to early stage cancer patients. For example, the Social Security Administration considers bladder cancer with distant metastasis or bladder cancer that is inoperable/unresectable to be a Compssionate Allowance. This means that someone with this diagnosis meets Social Security’s standard for disability benefits. If you have worked in jobs in which you contributed to Social Security but are too young to collect, you may be able to collect disability benefits and qualify on an expedited basis

Review your employers’ benefits

Your employer may offer benefits that could help you during cancer. For instance, I had purchased a disability policy through my employer that covered only me. When Ahmad was diagnosed with metastatic disease, it was devastating to the point of causing me significant stress and anxiety. The prognosis was grim and the news seemed to rapidly get worse and he quickly got sicker. I was able to file a claim for stress and anxiety for myself that helped us through the duration of his treatment. Similarly, I had purchased (almost on a whim because it was not too expensive) a cancer policy through my employer that covered us both. I didn’t expect that we would ever use it. But that policy provided direct cash when certain events occurred like diagnosis, chemo treatments, hospice admission. It had limits but it helped us tremendously by providing additional financial support.

Research veterans’ related programs and work-related disability programs

For certain jobs such as police officers or firefighters in some jurisdictions, a cancer diagnosis can be considered “presumptive” and therefore eligible for workers’ compensation coverage. This means if you are diagnosed with cancer, it is presumed to be work-related and therefore, covered by workers’ compensation. Military service may also qualify you for certain benefits. Ask this question to your employer’s human resources department and/or the branch of the military in which you served.

Contact outside organizations

Meet with an oncology social worker at your treatment center and ask about financial and other assistance for cancer patients. For example, I learned at the time we faced cancer that the American Cancer Society offered free taxi rides in our city to and from cancer-related appointments. Social workers often know about local resources like this. Also, check with Cancer.net, a resource of the American Society of Clinical Oncologists (ASCO) that includes many resources for patients.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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