Cancer and the Affordable Care Act (ACA)

By Julie

Unlike much of the nation, I have not been overly politically engaged in the past few months – but that doesn’t mean that I’m not listening. When I do engage in political discourse, I typically gravitate towards supporting and discussing issues related to education, the environment, and arts and cultural programming – but for reasons I don’t think I have to explain at length, healthcare is a big topic for us right now.

You won’t see our names in the headlines, but over the past five months my family has become a statistic in the healthcare debate. We are now counted among those who use more than they contribute to the healthcare system. We hold our breath as we open bills because it’s nearly impossible to predict what the numbers will say, and we shuffle around our financial priorities to make ends meet each month. I won’t pretend to be an expert on healthcare spending, but I know a lot more now than than I did about this system and I think I have something to contribute to the conversation.

I consider myself to be a political moderate, but when it comes to healthcare my political bias has always tended to swing left. While I value the concept of small government and appreciate the free market economy, I consider healthcare to be a fundamental right that we all should have equal access to. I supported the big picture goals of the Affordable Care Act (ACA), even as I watched my own insurance premiums increase, and I was more than happy to pay a little more for my pizza if it meant that the franchise I was buying from could afford to provide health care to their employees.

I don’t know enough about the economics of the ACA to argue in favor of it remaining as it currently exists, and since the plan for healthcare reform from the new administration is still taking shape I will reserve judgement on what is to come for the moment. Once the new plan is finalized I will rely on a variety of trusted news sources to help me understand its implications and factor that into my future voting decisions, but I will leave the economic analyses to the experts.

What I can contribute to this conversation is an understanding of the economics of balancing an expensive medical diagnosis while trying to maintain some semblance of a normal life. Travis and I were in a better position than most to financially handle what we have been dealt: we don’t have children; we both have good jobs; we are both insured (whew!); and, at the time, we had decent savings. We are also fortunate to have an amazing network of family and friends who have provided support (monetary and otherwise). Still, in hindsight I wish we had been better prepared.

Here is a list of things I wish I would have known and the amount of additional money I would have tried to have in savings to cover one year of unexpected expenses.

  • Medical Bills – $15,000 – The ACA sets an annual “out of pocket maximum” that insurance companies can require of their policyholders. For 2017 this is around $7,000 but the IRS has the authority to adjust this number annually. In our case Travis was diagnosed with cancer in the middle of October so we cleared our maximum in 3 months only to have it reset again in January. All bets are off if this provision disappears from the national picture so make sure you’re familiar with the maximum set by your own plan, and then double that number in case your diagnosis comes just before the end of the year.
  • Travel & Vehicle Expenses – $10,000 – If you happen to live next door to a major medical facility that treats the exact illness you or a loved one are dealing with, you can probably reduce this number. In our case Travis’ treatment requires us to travel approximately 160 miles round trip for each appointment. In general we average one trip per week to the cancer center, but there was a six-week period when we made this trip almost every day. We’re fortunate that gas prices have been relatively low, family members have pitched in to assist with the driving, and we are lucky that the travel distance isn’t even greater than what it is. We expected gas and toll expenses but didn’t think about  wear and tear on the car. We’re due for new breaks and tires about 6 months earlier than I had planned, I’ve already had my oil changed twice this year (and it’s only March) and my Forester, purchased new in 2014 is approaching 120,000 miles so we’re already considering a new car long before we’d planned to.
  • Lodging and Dining Expenses – $5,000 – We have been very lucky to have access to the services of an American Cancer Society run Hope Lodge facility, but there have been occasions where rooms were not available and we have had to stay in a hotel. Depending on the resources available to you, this could go up or down. Traveling and food sensitivities due to medications (chemo) can mean a lot of meals on the road.
  • Miscellaneous – $5,000 – Unfortunately, a major medical problem does not make you immune to other life challenges. In the months since Travis’ diagnosis we have had to replace a hot water heater and repair a septic system at our house. If you’re a homeowner and you’ve just blown your savings on medical bills, you’re going to want to have an additional reserve for house repairs because, well, when it rains it pours. Also, keep in mind that if you are your own handy (wo)man (or you’re lucky enough to be married to one), you may now have to pay to have other people take care of these problems.In addition to household emergencies there have been an uptick in miscellaneous expenses related to our general household needs – for example, money spent on winter heating expenses because we’re home more often during the day and illness often makes you feel colder than you normally do.
  • Mental Health & Other Health Expenses – $5,000 per family member – I’ll be brief here illnesses come up, regular health needs continue, and counseling can be expensive (but it’s an important piece of your recovery).
  • Lost Wages – $25,000 – We are both incredibly lucky to have employers who have been understanding and supportive – my employer has allowed me to telecommute and Travis’ employer allows him to receive donated leave from his colleagues (and we have been amazed by the outpouring of support he has received from them). Even with that I have had to take some unpaid time off, and expect to do so again in the future. Hopefully Travis will not have to go on disability at any point in this journey, but we just can’t be certain. So, ask yourself, how long could you maintain your lifestyle without your or your partner’s monthly income?

This list includes an estimated $75,000 in lost wages and additional expenses, medical and otherwise, that I wish we would have been better prepared to handle – and this just an estimate based on our experience thus far.

At 32 years old I have never paid a late fee on any bill, I have a 401K and a car that will be fully paid off in approximately 2 months. My husband and I own a house that we have successfully converted into an income-generating rental property. We are coupon-cutting-detail-oriented-budgeters with two solid incomes and no children. We were doing pretty well at this whole adult thing, and yet there was no way we could have been financially prepared for the storm that was coming. Being members of a society with a functioning healthcare system is the primary reason that my husband is still alive, and the reason that we have the possibility of a life again when he finally beats cancer.

The Republican Party emphasizes personal responsibility when cutting social programs while Democrats espouse the values of communal support in propping up those most in need in society — the reality is that both principles are right and yet neither is enough when it comes to an individual healthcare crisis. Even relatively privileged hyper-prepared individuals cannot plan enough for the financial challenges brought on by a devastating medical diagnosis, and even the most carefully curated national health care program will not suffice for an individual who fails to prepare themselves for crisis.

As the healthcare debate continues, I implore you to engage, discuss, listen and learn. Don’t assume that one side has all of the solutions. Look for reputable resources rather than relying on memes, sound bites, and the rhetoric of politicians who may be motivated by advancing their careers. Health care should never be a partisan issue.


One thought on “Cancer and the Affordable Care Act (ACA)

  1. Julie, thank you for sharing another aspect of your cancer journey. The American Cancer Society has an advocacy sister group- the Cancer Action Network. Their website http://www.acscan has information on the latest legislature and links to local representatives by state. Insurance coverage and the ACA has been a priority since I have been a CAN member. There is a Take Action tab to share your health insurance story with lawmakers, #KeepUsCovered to protect ACA provisions for cancer patients as well as many other ways they are working endlessly to make cancer a national priority. Prayers for you and Travis as you continue your fight and enlighten and encourage so many along the way.


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