The Cost of Cancer

It's been great being at home for over a week now.  I've been getting some good sleep, spending lots of quality time with the family, and even getting out and about to see some friends in town.  My return to the hospital is scheduled for Monday to begin the first round of consolidation.  I've been trying not to think too much about my return even though it's only for five days, I just want to enjoy the time off.  I'll return to more frequent updates next week when I'm back undergoing treatment.  For now, here is the original text I wrote as an article for a local newspaper about the cost of cancer.  My hope is that you'll all look over your own coverage and assess if there are holes to plug.  In summary, you'll want to have six months of income set aside (good luck with that one), plus an emergency fund that would cover your maximum out of pocket expenditures for a year (see your health insurance policy for this stat).  You may also want to take the extra step of disability insurance if you don't have that through your work.  Aflac or similar to supplement lost income which is the real potential threat in any long-term illness.

The Cost of Cancer – Published in The Stuart News, February 13, 2014

by Brian Duncanson

Since my Leukemia diagnosis three weeks ago, one of the issues on my family’s mind has been the overall cost of the illness. A large, unplanned demand on our finances could be devastating. After several weeks of living with cancer and doing some research, the scope of the financial impact is just starting to come to light. The three big hitters are; direct health care costs, loss of income, and out of pocket expenses.

Health Insurance

Fortunately, my family does have a health insurance policy. However, both my wife and I are small business owners, so we purchased a major medical plan directly through Florida Blue to cover us and our three children. Cancer treatments qualify as a major medical, but we have a high deductible of $5,000. After the deductible, we have co-pays that kick in for certain categories of covered medical expenses. There is a defined annual cap of total out of pocket expenses of $10,000, so our upward exposure on covered medical expenses should be capped here. The open questions remain; how many years will treatments span? And, will all costs continue to qualify for coverage? Check your policy for an annual out of pocket maximum.

Patients facing cancer without insurance face more uncertainty. They can benefit from the Affordable Care Act because they can still acquire a policy after diagnosis.  See healthcare.gov for more information.

Loss of income

The next area of concern, and potentially the most devastating, is loss of income for a working person. As a cancer patient you can apply for the Family and Medical Leave Act (FMLA), but this only guarantees your job position for 12 weeks. First, 12 weeks can be a very short amount of time in a cancer patient’s treatment. Secondly, it does nothing to guarantee your salary.

I am extremely fortunate that I have a desk job and work from home on my computer and phone. Since I have been feeling well during my treatment, I transferred my office from my home to my hospital room. But for most this is not a reality.  The income loss would be significant. 

My wife is a physical therapist; she would be completely unable to work, and the practice that she’s worked so hard to build over the last few years would vanish.  This is where a short-term disability insurance policy like Aflac to supplement income could be handy. 

During my treatments, my wife has been unwilling to accept as many new patients so that she can keep her schedule open to visit me. So besides the patient income, the spouse’s income can diminish in response to additional care giver duties.  Income loss can quickly skyrocket from $0 to $100,000+ in short order and force a huge financial strain onto an already stressful situation.

Out of pocket expenses

As you go through cancer treatments, smaller out of pocket expenses can begin to add up.  Travel costs to and from the hospital, specialty supplies, paying for private services to help you at home, follow up doctor visits, prescriptions not covered by your medical plan, and the big unknown is uncovered medical costs like trial drugs.

The big cancer charities (American Cancer Society (ACS) and the Leukemia Lymphoma Society (LLS)), they distribute the bulk of their funds to research and to a much lesser extent patient support. Of course, the research is important and continued advancement necessary for everyone to benefit from, but it leaves the patient mostly on their own to fund their care. The LLS has a once per year patient financial aid of $100 for completing a one page form. This renews each July 1^st.  Larger amounts from $1,000 - $10,000 are available through the LLS Co-Pay Assistance Program based on diagnosis type. You must complete an application.

In the end, personal fundraising becomes the best option for people.  There are now several websites dedicated to this purpose. Here are a few samples; Youcaring.com, Gofundme.com, and Crowdrise.com all allow you to quickly set up personal fundraising pages, send out updates and allow your network to donate via credit card online.

Assuming I can continue to work, I am expecting the total impact for my specific case to be around $25,000 for this year. While not a devastating amount, certainly an unplanned one. For most, they would experience and major income loss and this number would be much higher.