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The Financial Burden of a Rare Cancer

Paris Catacomb Skulls

“Everyone’s got a plan until they get punched in the mouth.” – modern day philosopher Mike Tyson.

A cancer diagnosis is one of the most devastating mouth-punches there is. It can drastically alter or rapidly end your life or the life of loved ones. The effects on the body and mind can be overwhelming, and sadly, the financial impact can be equally dire.

I’ve contributed to the Gofundme campaigns of several friends and family members over the years; I’ve seen how difficult it can be.

Nearly half of cancer patients exhaust their life savings in two years, according to a study published in The American Journal of Medicine, and nearly 3% of them will file bankruptcy… others won’t survive long enough to reach that unfortunate endpoint.

Today’s guest post was shared with us by Emily Walsh of mesothelioma.com. She shares what one can do when facing such a diagnosis to prepare for and potentially lessen the financial impact of such a nasty diagnosis.

The Financial Burden of a Rare Cancer


A cancer diagnosis will immediately change a person’s life in almost every way. Doctor’s appointments will be scheduled and there’s going to be a lot to think about regarding your health, family and future plans.

The financial costs associated with cancer can often be overwhelming, to say the least. Even if you or a loved one have health insurance, unforeseen costs associated with various cancer treatments can become a burden. Diagnoses and life situations are unique to an individual and the disease they face, and costs will vary from patient to patient.

Cancer treatment options can vary in a multitude of ways. Some may require immediate surgery, while others undergo ongoing chemotherapy or radiation treatment. Patients who require extensive treatments vital to their recovery face unforeseen bills that will continue to grow on their path to remission. Additional expenses such as travel and accommodations can result in a staggering amount of debt.

The treatment for any type of cancer has high financial costs. This especially holds true in the case of rare cancers. Rare cancers account for 20 percent of all cancer diagnoses in adults, and 71 percent of diagnoses are in patients younger than 20.

Although there are programs and resources to help with cancer-related expenses, the costs associated with rare cancer can be astronomically higher than those of a more common form.


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Planning for Rare Cancer Treatment


One of the first things to do after being diagnosed with cancer or an illness that will require extensive treatment is to sit down and map out your current financial situation.

Experts say subtract out the regular monthly bills to which include expenses such as rent or mortgage and utilities, transportation, groceries, student loans, car payments anything of this nature.

Try to take this information and figure out what expenses can be cut out such as monthly subscriptions to streaming networks, having a night out, retail shopping or entertainment. Another step to take is to organize your assets to see if you have viable options you could sell down the line if needed.

Before beginning cancer treatment, it’s important for a patient and their family to learn as much about the cancer as possible. This can help them plan for any costs ahead of time.

Provider visits, lab tests, and drug costs are just a few of the expenses that begin to add up when treating cancer. It’s important to understand what options will be  available and the estimated price of those treatments. Patients should talk with medical professionals about what options are most viable.


Traveling Costs


To properly treat rare forms of cancer, individuals must seek out centers that are equipped with trained specialists as well as the necessary accommodations for patients. This may mean going out of state, or even country in some cases.

Family and loved ones may start to experience a number of travel-related bills, whether it be small bills like gas all the way up to cross country plane tickets. Long term travel and visitation could potentially keep loved one’s out of work, ultimately taking away from a source of income. Costs for traveling, lodging, and meals can add up depending where the nearest cancer specialist is located.



The Costs of Rare Cancer Treatment


Finding a cancer treatment center and a team to treat rare forms of cancer isn’t always easy. In addition to traveling to specialized treatment facilities, patients with rare cancers need to seek the expertise of medical professionals qualified to treat them.

Mesothelioma cancer is a specifically rare form of cancer that attacks the body’s major organs including the lungs, abdomen and heart. However, due to the nature of the disease, finding the right specialist for treatment is imperative to a successful battle.

Treatment for cancer, common or rare, can be expensive for insured patients, as well as uninsured. When insurance doesn’t cover the costs of treatment, patients are often forced to pay out of pocket. Most cancers, common or rare, typically require a form of surgery, chemotherapy, radiation therapy, and clinical trials.

For those diagnosed with a rare disease or illness, they may find themselves left with little research and information to turn to. Recently, the FDA has began approving drug treatment options for rare cancers, but they often come with a hefty price tag.



Understanding An Insurance Plan


It’s important to understand which medical services and treatments insurance covers as well as what expenses patients will be required to pay out of pocket. Patients may be able to look at a variety of payment options with their insurance provider to cover treatment options available.

When in doubt, ask for help. Hospitals and insurance companies offer a number of different guidance options. Professionals have a keen eye and can help you see any issues in bills or set up payment options.

After a bill comes in from a treatment or new medicine, make sure to review it carefully. Being charged something your insurance covers is important not to miss. Also, double check to see you’re not being charged twice for something.

If you’re ever unsure about a bill, don’t hesitate to call your insurance or an advocate to walk you through any questions you have. With treatment being so expensive, it’s vital there are no mistakes during the billing process.


Cancer Patient Assistance Programs


Through nonprofit co-pay relief programs, patients can look at a variety of options for seeking the help to pay for their treatments. From copayments to transportation costs, these nonprofit assistance programs will help patients in covering the overwhelming expenses associated with rare cancer treatment.

The costs associated with any cancer diagnosis can be overwhelming. Looking at available treatment options, speaking with qualified medical professions, and strategizing a plan to prepare for the costs is smart. Asking questions is important and patients should feel comfortable talking to their care provider about any issues that may arise.

In certain instances, health insurance companies may deny coverage for a treatment method, prescription medicine, or outpatient care service and you and your family can submit to appeal the decision.

Working with the insurance company to resubmit the request could positively change the outcome of a bill. In some cases, insurers can try a different and more accurate billing code that offers more coverage or a reduced price of payment.

The internet is our greatest strength these days and can be a great tool for the many who are suffering the burden of a disease. No matter how old a patient is, resources are available.

There are a number of free web-based programs that enable you to keep track of all of your personal health records in one place, such as medical information, labs, notes from treatments, pharmacies and even personal notes and health goals.

Anyone battling an illness, cancer, or rare disease, no matter the case is going to need a lot of support between friends, family, and their health professionals to keep morale strong and high. While there might be a number of hurdles to jump through, the constant thought of money should be the least of a patient’s worry.



Do you have family, friends, or patients who have had their finances drained by a cancer diagnosis? Any other recommendations for someone who might be facing a new cancer diagnosis?

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4 thoughts on “The Financial Burden of a Rare Cancer”

  1. We often hear that we need to be prepared for long term care but 20% of people end up with cancer. I thought health insurance covered most of the cost. This is enlightening. How do you prepare for these unforeseen expenses.

    • When you retire, you reclaim all the risk your employer has been shielding you from, so you need to be able to cover not only your expenses but your increased risk. The only solution I know is work longer and save more to cover the risk.

  2. Subscribe to get more great content like this, an awesome spreadsheet, and more!
  3. I have written extensively on planning for a post retirement disaster like cancer. Thank you for this article, it was excellent. I developed some statistics and found 1/3 will get some kind of cancer in their lives. Of the 1, only 20% will die. Of the remaining 80% something like 40% will exhaust their savings in 4 years. Rare cancer (catastrophic) is rare but cancer at some level is pretty common. If you are a couple you have 2 bites at the apple. In addition to cancer there are other likely diagnosis. NDD is diagnosed at 1/10 at age 65 rising to 1/3 by 85. A common time frame for that disease to play out it’s natural history once diagnosed is 12 years. That can mean a decade of 24/7 memory care. Again a couple has 2 bites at the apple. Men tend to be dead or near dead at 85, but a woman who lives to 65 has a 30% chance of living to 90, and a 1.5% chance of living to 100, so a woman living to say 95 is not so uncommon, and a 1/3 chance of a NDD diagnosis. If you’re 85 and running out of money because you retired early and made no provision you’re pretty much hosed. No greeter job at the Walmart for you. Of course as a couple you can mix and match one gets CA and the other NDD. I have some friends maybe 7 year older than me. She pulled the Alzheimer golden ring and he just pulled ALS a couple months ago, both expensive and both relentless.

    So what’s a mother to do? In my portfolio I created self insurance. It’s called a Roth IRA. My Roth is considered separately from the rest of my portfolio when it comes to funding day to day spending. The Roth holds money, risked at about 10% of the market’s risk, and just sits there. Over decades the Roth grows unmolested ready to provide extraordinary protection for my wife and myself. It also provides some protection against low probability financial disasters like a 10% inflation rate. The remainder of my portfolio provides my daily bread. This plan splits my risk. A closed portfolio is closed to SORR making that money far safer than an open portfolio. The remainder of my portfolio is open, so only a portion of my estate is open to SORR. After 10 or 15 years or when it grows big enough, I will tap the Roth on occasion for some tax free WR money to buy a new car or something. Small occasional withdrawals are not relevant to the growth. If necessary late in retirement the Roth could also be a second open portfolio if the first fails, or a source to pay the excessive tax burden experienced when one spouse dies. Actual retirement has a lot of moving parts not well described by 4 x 25. The sooner you analyze this the more the Roth can grow and the greater will be the % of the pile provided by interest. A 60 year closed portfolio can grow to monstrous proportions, and the need to tap will be likely later than sooner in life, for some diagnosis. So a retirement portfolio and insurance portfolio need to be funded in parallel. In my case retirement was more aggressively funded but insurance was not ignored. It meant working longer.

  4. Health is probably the greatest unknown part when planning your financial future.

    You can have all your financial ducks in a row, think you can retire early and then get hit with devastating news like a cancer diagnosis. And the more you have in you family, the more the odds increase.

    As a physician it is very hard to get a second bite at the apple so when you decide to retire, early or not, you need to have several margins of safety to account for life unexpectancies because you may not just be able to re-enter the medical profession if you later find out your finances cannot handle something like this.


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