The Complex Finances of Cancer

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It’s no surprise to anyone that you talk to who has cancer or a close friend or family member with cancer or a parent of a child dealing with cancer. Cancer is expensive and the finances of cancer are complex.

The “Basic” Medical Costs of Cancer

The immediate burden of care when it comes to medical treatment for the acute phases of illness can easily total one million dollars for a child say, needing a bone marrow transplant, this is the portion that is picked up by insurance.

Yes there are insurance premiums, deductible and maximum out-of-pocket expenses but with the additional controls placed on those maximums by the ACA they can arguably be accounted for and controlled in some manner.

For most families, at least for the first five years or so, assuming things go as well as possible, chances are medical insurance will be fully utilized. Between scans, treatments and “survivorship” costs.

Known Effects, Unplanned Costs

Then we get into the next level of costs those which are clearly related to the illness and medical treatment but are not covered by insurance.

For example, with my son currently undergoing a bone marrow transplant and just having went through six rounds of high-dose chemotherapy and a seventh round of myeloablative chemotherapy to prepare him for a bone marrow transplant, he now has hearing loss in both ears at the disability level.

This hearing loss is a direct result of the treatments that he has been given. Specifically, for him, it is due to the platinum containing chemotherapeutic agents cisplatin and carboplatin.  Due to these drugs there are immediate losses noted in hearing, though it can proceed quite unpredictably over time throughout his life.

So at three years old, still in his active phase of treatment, not even accounting for the highest doses of these agents that he received during his current bone marrow transplant, we were already aware that the loss was at a disability level.

Being that this is a three year old, there are profound psychosocial impacts to hearing loss. And it is imperative that he gets his hearing aids as soon as possible.

What will be nearly a year of active treatment and removal from the normal life that a two and then three year old would live is already problematic enough.  What has he already missed out on when it comes to the learning and development as such a small child? Add in the immeasurable stress factors and PTSD and it’s really hard to say what the long-term impacts of treatment are.

Now add to that an invisible disability of hearing loss and these kids are really facing a rough go.

Suffice it to say I was more than surprised when the other day, only eight days out from his bone marrow transplant, still having fevers and unable to speak for more than four days due to the extreme mouth swelling and soreness caused by mucositis from the chemotherapy, the audiologist came to fit him for his hearing aids. It was then I was informed, that it appeared, the hearing aids which range from $3000 to $7000 are not covered by our insurance.

When I looked at them dumbfounded they said “well it’s an out-of-state plan.” I said “it’s a national plan” questioningly.  They said “perhaps we just didn’t dig deep enough.”  The next statement being “and if they aren’t covered there are a number of charitable organizations that may be able to assist in the cost especially related to cancer care based on financial need.”

Charities and Financial “Need”

So far, and before cancer, we have been a frugal family who has made wise financial decisions. We have put, quite literally, nearly every nonessential spending item on hold while, me, the sole income provider for my family has taken a significant cut to working hours for cancer care. Our smart and hard-working habits have meant that we have been able to weather the storm with relatively little financial toxicity compared to many of the families that we meet.

Of course there is perhaps a whole different conversation that could take place here regarding some of the many ways that our frugal lifestyle, pension for saving, austere living, and so on have allowed us to weather this without as much of that financial toxicity.  Or, how those things have allowed us to manage so far, I should say, because we still have a long way to go and relapse is common in these children, and travel out of state for therapies not available at home and clinical trials with complete loss of work is not in any way and unforeseeable path that we may go down.

So, though we have been able to handle many of the money issues so far, we are by no means immune to that toxicity despite our frugal ways.

Crowdfunded Cancer Care and Support

Soon enough, as happens with most families, the offers of community support and those willing to help out around your house wane, as life and the shock of what’s happening in your personal life wear off for those around you.  Indeed, it only took a few months for this to happen to us in all but the most empathetic, close individuals.

And rightfully so. One cannot expect friends and family who do not live this day in and day out to be able to cope psychologically with the never ending battle these families face.  

And as an interesting aside, families in this position are often faced with needing to ask for assistance and request help, or at least obliged to take it when is offered, even if they feel they don’t need it yet. When the guilt related to it feels very strong, because, if they are being mindful of the normal progression of things, they should be aware that sooner or later those offers will dry up. Likely when they are most needed and, likely when families and patients no longer have the energy and wherewithal to seek out the support that they need.

But back to the hearing aids.

A little questioning online and it appears that indeed hearing aids are often not covered by medical insurance. They are relegated to the same class of insurance as a vision and dental.

Interestingly I’ve never been offered hearing insurance.

I was already aware of the difficulties families face 5 and 10 years out of treatment, when, having suffered radiation and many bouts of chemotherapy during their developmental years, families find that they now suffer total out-of-pocket expenses to have all of their children’s teeth pulled and replaced with implants because they never grew or they rot it in place due to their cancer therapy.

I will have to share dental care after childhood cancer concerns as an anecdotal concern, but one verified by multiple families years out from treatment as well as our oncology team. Medical says it’s a dental issue, and dental does not cover the full costs.

And most frequently oncologists and families are unable to force insurance to pay for it even though it is directly related to the toxicity of the medical treatments for the cancer.  Assuming these families do have dental care the maximum annual spending is typically so low that it would not cover the amount of work that these children need.

The “Expected” Rate of Charitable Cancer Cost Control

This brings me to the “meat” of the conversation which was pointed out by one of the oncology fellows on our treatment team as a question that others are asking. With millions of dollars spent in direct medical treatment for patients with cancer how much of the indirect cost is shifted to charities?

And, how much does charity assistance vary depending on region etc, further confounding things. Very interesting to consider (though I did not research that here) given that an estimated 42% of adult patients, diagnosed after age 50 (so, presumably, somewhat established in their finances), declare bankruptcy within two years of diagnosis.

If that is the case for older adults, what is the impact on families in their working years?

Most families it seems are not in my position.  They are forced to seek charity assistance immediately.  From what I’ve been told, the burden really starts to mount two to three months into care.  This would be a good time for you to brush up the wealth of literature around how close many Americans are to being broke with one simple unexpected cost.

We have taken advantage of the $1000-$2000 of non-financial-need-based assistance that has been offered to us via charities. I am not too proud to take funds that are available, fully realizing the impact that this journey will have on my family for many years.

Personal Finance and Personality in Cancer Care

I gladly sock it away, like a squirrel preparing for winter, the funds that are generously gifted to us by friends, family or other good samaritans. I choose to save most of it, knowing that this journey will be long, and unsure how many “non covered” expenses may come up; unwilling to make my family destitute so that we can take advantage of funds for those, who appear on paper, to be at great financial need.  We will continue to drive old cars, eat leftover hospital food instead of ordering out, drink the battery acid that is hospital coffee on all but the roughest of days and so on.

But I realize, many cannot impose these austerity measures on themselves. And indeed, there is a deeper question here about the shift in perspective that may occur when someone is diagnosed with a terminal illness.  The fact of being told that there is a very real and quite soon potential that your child could die, it makes that $7 hospital coffee shop coffee and that $15 meal delivered to hospital, or that grand trip that you can’t really afford all seem like nothing in the grand scheme of things.  

And it’s true, they aren’t that big when it comes to life and death and the idea that, if the ones you love most are gone, you WILL be starting over again. So why not start over with money too? Or maybe it’s the expected depression and anxiety that come along with dealing with these realities for extended periods of time.  The lack of sleep. We know that people only have so much willpower, and some have more than others.

I’m careful to try not to judge how people handle their world being upended.

Maybe I’m much more optimistic than my eternally outward pessimistic attitude would imply.  Because, indeed, if I felt that we would not beat the odds with my son, I would probably be much less concerned with my ongoing personal finance situation and ultimate retirement goals.

So, whose responsibility is it?

Still, there are questions surrounding who should be responsible for the many extra costs associated with treatment. What treatments are available or effectively phased out because families do or do not have the financial means to get to and stay the course of treatment, even if all of the direct medical expenses are paid for?

My family for example has had to relocate roughly 3 hours from home for my son’s cancer care.

He is now going into his seventh month of treatment. We have spent less than a total of 10 nights at home in our own beds during this time.

I use a combination of charity such as Ronald McDonald house, which we are grateful for, but has its own set of problems, and often has availability issues (there is more need than there is space), along with staying with friends and many nights on the hospital window bench.

We are eternally grateful and lucky to have met and been connected with some generous individuals who have provided housing assistance when needed in this journey. These are simply individuals we’ve met, not people acting through charitable channels, just friends of friends and people we have encountered by sharing our journey online.  

And sharing the journey online, and using the face of the individual suffering with cancer all feel like a necessary part of the burden of cancer, and the JOB that develops for caregivers as a “crowdsourced” treatment plan seems necessary for all but the very wealthy.  We share our journey personally so that others may share directly with us, and know we exist, if and when the time comes for us to ask for help.

“Poster Child”

We begrudgingly, and with some of the most mixed emotions I’ve ever had on a subject, allow every charity who has approached us to use ours and our sons image for their fundraising efforts.  And for the most part, we do not directly benefit (not more than anyone who would not allow their image to be used for fundraising and takes part in the charities services). In part, this is where some of the mixed emotions come up.

There is work and emotional labor involved in showing up for these events and putting on a  brave face. I would love for any of those funds raised to go directly to my son. Or to the college fund that we are no longer able to contribute to due my lost wages… But I’m also aware that he is one of the cutest bald headed cancer warriors, precocious and with great comedic timing, and he is quite literally fundraising gold.  Of course the charities and the newcasters want his face on their front pages and in their news segments.

And as we do benefit from the programs of the charities, even if we receive no additional benefit by doing the WORK that goes in to fundraising for them, our exceptional child does generate the fundraising dollars needed to keep those programs going for all… so, mixed as the emotions may be, we continue to take part.

And then question it every time.

Because, IT IS WORK.  It is work for him. It is work for us.  And we already have a full time job caring for him and have lost our normal streams of income.  Negotiating the available charitable resources and trying to seek out the various answers to nebulous questions and selection criteria for public and charity assistance is more than a full time job.

The Need For Transparency

So what’s right here?  I don’t know.

Check this article out for one parents discussion on misleading marketing and using the images of children with cancer for more extensive charitable campaigns. Using the images the generate the most emotion, pain, and largest opening of purse strings. Wow, do I feel every word there, and have had many similar experiences, and felt slapped in the face to find out where our efforts and the money our sons image is used to raise really go.

But, these charities are bridging the gap in the medical care vs. all of the ancillary costs that go in to treatment.  And, if it turns out we do need to (and can hopefully find) a non-needs based charity to help with hearing aids, for example, that means they are picking up a fair portion of the medical costs of treatment that would fall on families.

And lastly, what does this all mean for the health of the families and individuals in treatment?

Psychosocial Support and Caregiver Health

So far, and with so many hopes that we continue on this trend, my son has done remarkably well.  

How much of that has been due to our ability to largely put life on hold outside of caring for him on this journey?  How much of that can be attributed to the fact that we are a stay at home parent, and a working parent who has “been able” to stop working, so two parents fully involved in care? I put that in quotes, because I wouldn’t quite say it’s a choice, it’s a necessity that I take time off to care for him, and luckily, I don’t have to make the choice between two necessities the way some do.

Can we measure how much better he has handled this because, on the relative scale of stress related to the care of cancer, perhaps, my family has had somewhat less? Less stress, because I knew that we could afford to be without work for a year without losing everything we have ever built?

How much more present have I been able to be, in attending to his needs having a few less stressors?

How much has the fact that there are two parents at the hospital 90% of the time played into our ability to advocate for the best care for my son?  How has the fact that another parent has been there to allow one to step out for a moment if needed meant that we can be hyper-aware at all times?

Hyperaware, for example, to ensure that the medical staff follow proper sterile procedure (which fails much more often than any of you would like to know), as we know, one misstep and a life threatening infection could take place.

If my every waking hour had to be spent worrying about how the next bill was going to be paid or what charity was going to help me maintain my household for the next month, would I have the mental energy to watch all these things I need to?

Don’t get me wrong.  My life is not easy. I am tired and operating on less sleep than I ever thought possible.  My back is in permanent pain and spasms from trying to sleep with and soothe a three year old in a hospital bed with interruptions every 30-60 minutes by a nurse or an IV pump alarm.  I don’t even want to know what small problems are compounding on themselves back home. And there is still more money going out than is coming in.

Life isn’t fair, what can I say. And, on a positive note, I apprecaite everything much more, and am even happier with less, having gained a new and pressing perspective on what really matters.

So what can you do?

Unpopular as this take may be; don’t send another stuffed animal please. We’re drowning in them.

Ok, I don’t mean me (I mean, I do, of course, as I said, I’m not too proud to turn down charity, and maybe you’ll feel my efforts in writing this piece deserve some patreon-esque monetary recognition).  But, I am speaking for the families.

Sure, that first few weeks, it felt nice to get a new present every time someone showed up at the hospital room door or went to Ronald Mcdonald House.  

But after a while, it’s just too much. We don’t need more stuff. We need funds, folks.

And as feel good, fluffy, touchy feel-y as a stuffed animal is, I don’t think that’s what most families need either.

What do families need?  To know that they aren’t going to go broke or have to declare bankruptcy taking care of their families or kids.

Recently, another cancer family friend informed me of the organization in her region which pays for co-pays and deductibles of medical care and offers bill assistance to parents.  Of course, they offer fun things too, but fun isn’t the backbone of the organization, family support is.

I’d be lying if I said that I wasn’t a little bit jealous. And, it has nothing to do with income.  My friend is another highly compensated individual, as is their spouse. But the way their local cancer organization feels they can best support families is by eliminating the financial toxicity that comes with cancer care.

And again, this still begs the question of what role charity should play in all this.  But, unfortunately I don’t think that is going to be answered anytime soon. Hopefully I’ve given you some food for thought.

But, really, re-think those toy drives.

The time that you spent to take your kids to the department store to buy a full priced gift and then drop it in a donation bin at the hospital.. It feels nice.  I get that. But, whose feelings are we really worried about in all this?

Because if we could exchange every toy and blanket and stuffed animal we’ve been offered and all the branded logo gear from all the cancer charities, we’d probably be at least another $1000 ahead.

And we’d cut out the middlemen, the advertising departments, and the CEOs.

Here’s what I recommend:

Seek out organizations that send almost all of the money that comes back in directly to families.  And, perhaps, look for organizations that support families, not just based on their apparent financial need.  Look for organizations that support families with direct monetary support. Be it bill assistance, or money for groceries.

I was glad to see an organization at work like this in our local hospital.  A group that, once a child is admitted for a bone marrow transplant brings a small gift bag and then informs the family they will give them $1500 to spend however they see fit.  Bills, gift cards, whatever the parents decide.

Or, find a family in your community that is going through something rough and help them directly. If you only have $100 to give, that money is going to be put to much better use going directly to a family in need than being funneled and siphoned through a charity.

Understandably, there is still some need for paternalistic approaches that ensure families don’t waste all their resources on video games and pizza while their home stands to go in to foreclosure. So, maybe find a family and offer to pay their phone bill or mow their lawn.

And- please- follow through. If I have two pieces of advice for when you know a family in need it would be:

  • Do not just ask how you can help. They may be so overwhelmed with their life that they really can’t think of anything they need. And if they can’t think of anything, then think of some things you are willing to do, that fit your budget and your idea of the time you can put into it and offer up your concrete ideas for ways you would like to help. Then, they can say yes or no. Need some ideas? Email me.
  • Please, please, please: do not offer and not follow through or offer and then never follow up. Ask (and offer those concrete solutions) multiple times. And if they say “yes” by damned, DO IT.

And reconsider those fluffy feelings on your end please.

And research where the money is going.

Odds are, the charities with the best advertising departments are really good at bringing in the donations.  But at what cost? If the advertising to profit ratio is low, then isn’t it really just an exercise in continuing to grow the organization…

When do you proclaim that the charity has become cancerous to itself? When it takes more funds to sustain its ongoing growth for the sake of spending its non-profit dollars?  When has it lost sight of its original mission?

5 comments

  1. I cannot even begin to imagine what you are all going through. It’s actually disgusting hearing aids are not covered by your insurance, it’s absolutely insane that people can make terrible lifestyle choices and have weight loss/ heart operation improvements when something like this is not covered.

    Thanks so much for sharing your story I’m sure it will help a lot of people in a similar situation

    1. Thanks for stopping by Mike. Indeed, I hope to bring attention to it as, now that I’m aware, I think about the implications for the deaf community.

      I hadn’t considered the angle about lifestyle choices. That’s a very interesting (and politically charged) conversation to get into- especially as nationalized healthcare comes up more and more.

  2. Regina -It took me 4 months to finally re-find your info I requested to send a small donation to Uriah.
    Paypal.me/UriahsFight but I finally did it just now. Do not feel bad about posting that info all the time. People want to feel good by helping! Kate

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