Before my cancer diagnosis, I had just entered a period of relative financial stability. For the first time in well over a decade, I was not a single parent or a graduate student; I had steady and substantial child support; I had a decent job with reasonable benefits; I had a partner who was earning a good income as well. Somewhat to our surprise, our AGI in 2010 placed us solidly within the fourth quintile for household income, a rarefied position neither of us had achieved before and probably will not revisit again.
All that changed within three months of my diagnosis. I lost my job, which was the one that provided health insurance for my family, and that change alone had a dramatic effect on our finances even as our medical expenses increased spectacularly. Fortunately, I qualified for SSDI benefits soon thereafter, and a grievance I filed against my employer succeeded in gaining me extended health insurance benefits. That extension is now over, however, and we’re now coping with a large net loss of income plus a massive increase in health insurance premiums. Counting only the change in my income and the health insurance premiums now paid out of pocket (that is, not counting the enormous increase in medical and related expenses), we have had to absorb a total annual loss of approximately $40,000. I must confess that I am not well-acquainted yet with the provisions of my new coverage, only that it is far less comprehensive than the old one. A seat-of-the-pants estimate is that I average $500-600/month on non-covered medical care, plus new expenses of at least $400/month related to larger co-pays and deductibles. Our mental health coverage is lousy, and given our circumstances we are likely to be on the hook for a fair amount of money for outpatient counseling. It was the best we could do at the time.
Let me be clear: I am not complaining, because I know that many people have it much rougher than I do. Much rougher. I have a roof over my head, clothes to wear, healthy food to eat, and healing cats to comfort me, thanks largely to the entrepreneurial gifts of my husband. I do have some level of insurance, though at a reduced level than what I had enjoyed before, and I am crossing my fingers that some of that will improve once I can be covered under Medicare a year from now. Most importantly, my treatments have been effective, including those for which I have always had to pay out-of-pocket, and I have achieved remission—which in turn will permit me (I hope) to engage more fully in a post-illness edition of my life. In comparison to what I could be facing, bills and money problems are easy to deal with.
On the other hand, the financial impact of this illness has already been major. We’re about to exhaust our tiny little retirement savings; we need a new (to us) car, so to permit my husband to continue his 500 mile/week commute to his four jobs; we still have one child in high school for whom college attendance is going to require a lot of creativity. Retirement was a fantasy before, really; now it is a joke. (If I live that long, that is….) And if it is difficult for me, as insulated as I have been, then for others it must be all but impossible.
I hope to generate some income soon myself, by putting up a shingle to do writing and editing. Living in a large university town, I figure that the market can probably absorb one more editor/writer/coach. However, I’ve also thought about some other ways to generate income more quickly. I don’t have much left to sell in terms of furniture, household items, or memorabilia, but my daughters and I do have some clothing, books, and jewelry that we are willing to relinquish. That’s an immediate project to address in the next couple of weeks. My husband continues to be inventive and resourceful, and considering the contacts and commissions he already has for the coming academic year, we will be more or less OK. So far, barring anything unforeseen, we'll have made it through one more summer and head back into the academic year with reasonable prospects of getting through the next nine months without undue distress.
That's assuming we don't have some sort of a depth charge awaiting discovery. I have some contact numbers for case managers at my Cancer Center to help me wade through the bills. That in itself will be progress, because right now we have a huge box of medical bills that we have only begun to analyze. As one of my friends remarked recently, the person who could design good software to track medical bills, personalizable for individual circumstances, would make a mint. (If anyone is interested in working on such a project, I’d be happy to be a beta-tester for a share in the profits;)
Besides all that—one never knows. Already, some of us in the MNCC may be in much tighter spots financially than we would like. I do know that several of our regulars must struggle along without any health insurance at all, and that requires a different kind of resourcefulness. If anyone is comfortable with sharing his/her strategies in the comment thread, you would be most welcome. Below the DKos squiggle, I’ll be exploring a few (very few of the many) possibilities I’ve discovered to date.
Nurse Kelley posted a diary a few weeks ago about crowdsourcing as a method of fundraising. If my situation worsened, I might consider one of those options. However, earlier this spring, when we simply weren’t sure what would be coming down the pike, we convened a few friends with fundraising experience to put together a plan for some local events. Fortunately, we didn’t have to undertake such a big project then, and what we generated in terms of plans and pitches is now on hold. We’ll see if we can get over the next year or so without needing to ask for more help. As difficult as it might have been to put ourselves forward like that, I can also imagine that it would have been a very inspiring and humbling effort. If anyone here decides to go that route for themselves, I would be happy to serve as an (unpaid!) consultant to you, to help devise copy, plan strategies, choose addressees, etc.
I’ve also started to investigate some other online resources, supposedly dedicated to supporting people with cancer with financial issues related to care. It is quickly evident that there are two categories of resources: those offering help with medical costs and associated expenses and those offering help for other kinds of expenses. Not surprisingly, the first category is larger, since those expenses are easier to distinguish and address. (Somewhat myopically, I’m not listing those resources, which clearly will be of interest to some people reading this—e.g. help with medications, including chemo; transportation and lodging support for those who must travel for care—so I would appreciate any suggestions of key resources to mention here.) However, there are apparently a few groups that also offer general financial assistance. It’s worth realizing before one heads into any search that some of these resources are also limited to people with certain kinds of cancer. That’s just how it is, unfortunately.
I started with two clearinghouses of information, one sponsored by the ASCO (American Society of Clinical Oncology) and the other by the Patient Advocate Foundation. The ASCO webpage, “Managing the Cost of Cancer Care,” has a number of related subpages, including a glossary, explanations of health insurance plans, and a page of information on “Financial Resources.” The latter page has a number of briefly annotated links to actual providers of support. I have no direct experience with any of them; perhaps someone here has, and can comment helpfully.
The Patient Advocate Foundation website looks interesting, but I have only barely started to investigate the many intriguing possibilities therein. I did complete a profile, which was supposed to pre-select programs for which I would qualify. Unfortunately, resources for veterans, firefighters, and people with narcolepsy showed up on my list, though I qualify under none of those categories, so I am a little skeptical about their screening logarithm. However, the general resources that they do offer look more promising—especially the opportunity for a free case manager to help run interference with insurance companies. And their FAQ page is clear and logical to me, so that helps balance out the impression that the sloppy profile results conveys. I will be giving them more of a try in the next couple of weeks, and I’ll let you know what I discover.
If anyone has anything to share about these sites or others, please feel free! I’d be interested in reading about any and all strategies that we’ve employed to stay solvent and to keep getting the care we want and need.