by Sarah Diesburg

It was a cold day on March 6th, 2020. I was teaching two classes that day as a professor at the University of Northern Iowa, and I was trying to squeeze a well-needed hair appointment into my busy schedule. I was also entering the third trimester of my second pregnancy.

That’s when I had the seizure – the first sign that my early-stage breast cancer, treated almost five years ago, had returned, and spread to my brain. Later, after giving birth to a healthy baby girl, I was diagnosed with stage 4 metastatic triple negative breast cancer at the age of 37.

A metastatic diagnosis means that cancer has spread beyond where it was originally diagnosed, and it is truly a terrifying place to be. We found my cancer had spread to three small places in my brain, lung, and chest lymph node. Average life expectancy of someone with the triple negative metastatic breast cancer subtype ranged around 2-3 years.

I had a newborn baby and a toddler at home, as well as a loving husband. I couldn’t leave them. I started on a newly approved combination of chemotherapy and immunotherapy as soon as I recovered from brain surgery to remove the tumor from my brain. I also started reading everything I could about this disease, and I made a vow to myself to do everything I possibly could to stay alive. I ate a healthier diet. I started exercising a lot. I worked on my stress, even though that seemed ridiculous at the time.

As I write this article, I’m coming up on my two-year anniversary of that fateful date. And, amazingly, I have no evidence of disease (NED), which means cancer cannot be identified on current scans. I am one of the small handful of people with solid tumors for which immunotherapy, along with targeted radiation, has been able to keep me in NED status. For the last 16 months, I have been on maintenance immunotherapy alone, which luckily for me has no side effects.

Immunotherapy is so new in this space that my doctors do not know how long my NED status is likely to last, but they are getting cautiously optimistic that it could last a very long time. Maybe even a very long time. I’m also not stopping any of the healthy habits I picked up along the way to help support my body and immune system.

I wish I could send this article back to myself two years ago. I searched those first few dark months after being diagnosed stage 4, and I found very few stories of hope. I’m still here, and I’m full of hope and determination for a long and hap

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SOURCE - NATIONAL CANCER INSTITUTE

​Financial toxicity often called financial distress, is used to describe how out of-pocket costs can cause financial problems for a cancer patient. These out-of-pocket costs are what a person pays for medical care that is not covered by health insurance. Some of these costs could include:
• Copayments – The amount a patient pays for a healthcare service such as doctor appointment or a prescription.
• Deductible – What you need to pay for medical care before your health insurance plan begins to pay.
• Coinsurance –A percentage of medical costs you will be responsible for before your insurance covers. For example, you pay 20% and your insurance pays 80%. Some of these costs can be for hospital stays, outpatient services, medical appointments, and prescription drugs. Cancer survivors usually report higher out-of-pocket spending than people who have not had cancer. Some cancer survivors report spending more than 20% of their annual income on medical care.

Cancer is one of the most expensive medical conditions to treat in the United States. This is because cancer patients receive multiple types of treatments, including surgery, radiation therapy, and systemic treatment, and may be hospitalized. They receive more expensive chemotherapy, immunotherapy, and other new types of treatments. Prescription drugs maybe higher priced drugs or brand names (versus generic drugs) and may increase over time. Cancer patients may be paying for ongoing cancer treatments or care for late effects from their treatment. Even with health insurance these costs, along with higher health insurance premiums may cause financial toxicity. Several factors in the household affect risk of financial toxicity You and your family may have less income and assets, more debts because of the cost of your cancer care, trouble paying for housing, food, and bills because of your cancer diagnosis.

Having cancer may make it hard for you to do the physical and mental tasks for your job. You may miss time at work, or not be able to work at all. One study showed that working people who are getting cancer treatment missed about 22 more workdays a year than those who did not have any cancer treatment. Not being able to work may affect your employment-based health insurance (this is when part or all your premium is paid by your employer).

You may also worry and stress about paying medical bills related to your cancer. It’s reported cancer patients worry about wages lost for sick time or going to medical appointments. They may also have difficulty and stress when trying to understand complex medical bills.

Patients with advanced-stage cancer, recurrent cancer, cancer with a poor prognosis, more than one type of cancer and a chronic disease (such as heart disease or diabetes) in addition to cancer can have a higher risk of financial toxicity. This is partly because their cancer and treatment may keep them from having a job. Studies show a younger age at the time of cancer diagnosis increases the risk of financial toxicity because of a lack of savings and assets, other financial responsibilities, such as raising children, and not having health insurance (patients under age 65 are not eligible for Medicare) or having a high-deductible health insurance plan with high out-of-pocket costs.

Younger cancer patients and survivors also have a higher risk of bankruptcy than older cancer patients and survivors and people without cancer.

Survivors of childhood cancer may be more likely to have financial problems. A cancer diagnosis during childhood may disrupt education and limit job opportunities. Childhood cancer survivors may have higher out-of-pocket costs than their siblings due to the risk of second cancers and lasting effects of their cancer treatment.

Some studies have shown that people who belong to a minority race, are from a lower income household, losing a job, change in job status (switching to part-time or taking extended leave), difficulty returning to work, and general loss of productivity all are a risk for debt and bankruptcy.

Health insurance or lack of can affect your risk of financial toxicity
If you do not have health insurance you have a high risk of financial toxicity, especially because cancer costs are rising. However, even if you have health insurance, you may still have high out-of-pocket costs for your cancer care.

If you are enrolled in Medicare, you can also enroll in additional plans that can help reduce your out-of-pocket costs. You can choose to get supplemental insurance that can help cover medical costs that your regular insurance plan does not cover and you can enroll in Medicare Part D, which is a Medicare plan that covers prescription drugs. One study found patients with public health insurance (Medicaid or Medicare) have a higher risk of financial toxicity compared to patients who have private health insurance. Patients with public health insurance may also have fewer savings and assets, which is a risk factor for financial toxicity.

Effects of Financial Toxicity (Financial Distress) on Cancer Patients
Some patients have reported skipping doses or taking less medicine than prescribed, to make their prescription last longer and save money. Patients have also reported not filling a prescription because of the cost. The higher the copayment, the less likely patients are to take their medicine as directed.

Studies have shown that patients who have financial toxicity reported having a lower quality of life, more symptoms, and more pain. In addition, they have poor physical health, poor mental health (including feeling depressed), being unsatisfied with social activities and relationships, and worry their cancer may come back. Another study showed that patients who file for bankruptcy may be more likely to die than those who do not file for bankruptcy.

What you can do to help pay for your medical care
To help pay for your medical care, you may need to use your savings, borrow money, spend less on leisure activities, food, clothing, and utilities. You may also need to sell your stocks, investments, possessions, or property or move to lower-cost housing.

Informal caregivers often share in the experience of financial toxicity
Family members and friends may provide informal care for cancer patients. They often spend money on food, medicine, and other things the patient needs. They may also need to take time off from work to provide care for the patient. These actions may lead to a higher sense of burden, lower quality of life, and poorer mental health for the caregiver.

Ways to Reduce Financial Toxicity (Financial Distress)
The following are being studied as possible ways to reduce financial toxicity:
• Meeting with a financial navigator who will teach you about the health insurance plans and cost-saving methods for treatments that you are eligible for.
• Hospitals posting their prices so that healthcare professionals and patients know the costs when making decisions about which tests and treatments to use.
• Introducing value-based pricing so that patients can choose higher-value treatments with lower out-of-pocket costs.
• Reforming health insurance by passing policies that help cancer patients.

To read the entirety of the National Cancer article go to:
​https://www.cancer.gov/aboutcancer/managing-care/track-carecosts/financial-toxicity-hp-pdq



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