Paying Paul: The Danger of Misused Cancer Charity Donations

“I stand out in the patch of yard
looking at the moon, waiting for
it to come, scratch and heal my
broken parts.
But who am I to expect the moon to do anything? 

All it does each night is float,
bare and alone, above the pink
flamingo ornaments, looking for its
own way back, taunting me.”

- from the “Dead Have It Easy” in Hanging the Angels (available for pre-order Jan to March 2025)

If you’ve read my previous IHC posts, you’ve likely discerned by now that I believe cancer survivors are all too often left to navigate a world with few resources. Ideally, cancer charities and foundations ideally operate in a space where a substantial amount of that organization’s profits are used to help survivors. 

As a survivor, I’ve had the chance to deal with several of these foundations including last summer. Some are expertly and compassionately run (for instance, The Testicular Cancer Society), but not all of them are. For example, last summer I went to one of the “cancer camps”, where cancer survivors spend some time in the same location, bonding.  This blog post is in no means a condemnation of “cancer camps” either. Some of these camps (for example, Send It) are well run from what I’ve heard. 

Unfortunately, however, not all “cancer camps” are well run as I’ve discovered. I am lucky to be a cancer survivor as are all cancer survivors. Understandably, like most cancer survivors, I greatly value my freedom. At the cancer camp that I went to, however, one essentially abandoned their freedom and adult privileges for a week so they could be bossed around by camp management. 

If you were caught doing any type of work during “daylight hours” (ie, “at all”), you were yelled at by camp management and told to stop what you were doing. Occasional short exceptions were given where you could go into a separate room with the preface that this was an “exception”. I was offered a book deal while I was at a camp. Trying to write a response email to the publisher and review and sign the corresponding contract is not something I should have had to fight for. I’m not sure how giving up my adult freedoms for a week helped me advance in my journey as a cancer survivor.

Furthermore, not to brag or toot my own horn, but I am a smart man. I have a Juris Doctorate, went to NYU, have over 10 years of experience in strategic leadership and media research. I’ve published several books, developed content strategies for major law firms, and by all standards, am intelligent. I do not understand the value or meaning in going to a cancer camp that asks you to develop and mature as a human being that is structured by camp management that constitutes neither cancer survivors nor anyone trained in psychology. As such, there was a great degree of pomposity and arrogance in receiving someone who had not only never walked the trail cancer survivors never are left to wander.

As such, my experience at cancer camp was a pretty bewildering one. Not to mention, during camp, I was exposed to a “project” that the camp head’s son was working on. I happen to be an expert in the project’s area to a degree that the son wasn’t and as such offered advice on how to best address things. The son treated me with advice and commentary as if I didn’t even know what I was doing. Instead, the son commented on several occasions that he’d spent tens of thousands of dollars on the project. The “project” basically offered an opportunity for cancer patients to listen to the son (who is neither a survivor, nor trained in any degree of psychology or addressing the mental perspectives associated with cancer). I’m not sure why any cancer patient or cancer survivor would want to do this? At best, these types of experiences are meaningless. At worst, they’re downright dangerous and harmful.

When I got home, I kept thinking about the camp and how it was run. I even located the organization’s 990 filings, which is where things got especially troubling. I quickly learned some even more upsetting details including that the camp’s management (all related, none trained in any suitable area) pay themselves approximately half the camp’s yearly revenue, which is a disturbing and substantially higher percentage than other comparable camps. It’s then I started viewing the camp for what it really is: a family who has learned that they can ride the system of “helping cancer patients”, while paying themselves what most people would view as exorbitant salaries for a foundation that I’m still not really sure how it helps cancer survivors other than provides them with a free week vacation based on their identities as cancer patients. (Mind you, the campers end up participating in what would best be described as a prison where their liberties are stripped away and they’re subjected to the whim and fancy of a family who thinks they “understand” what cancer survivors go through, but that’s a more nuanced point.)

I asked a few “friends” who attended camp. I quickly received unsolicited phone calls from the camp management, which I ignored. I then began to realize that the person I thought was a “friend” wasn’t really a friend and had become something like a convert for the organization, who would do whatever it took in the name of the organization. Why would my friend become such a convert? The only answer I can give you is he probably values free vacations to the foundation’s various locations.

The lesson is, if you’re someone who donates to any type of charity or foundation, I implore you before donating, to adequately research how the foundation utilizes the funds it receives. How many people donate to charities and foundations like this without being aware that their donations aren’t doing much good to help cancer survivors, but rather to provide one unhelpful family nearly $200,000. It’s a simple truth: if you have people cheating the system and not helping cancer patients or survivors, all cancer patients and survivors suffer because those funds are wasted. 

Cancer foundations should be researching how to best help cancer patients. If you ask me, this would likely revolve around the area of helping disenfranchised cancer patients and survivors obtain the support they need and to help them navigate the medical system. As someone who has been trained as a lawyer, navigating conversations with medical providers is often challenging for me. I can only imagine how difficult it is for less-equipped individuals. This all leads me to:

Advice on Donating to Cancer Charities

When donating to cancer charities or any charitable organization, it’s critical to ensure your contributions have a meaningful impact. Here’s some advice to consider before donating:

1. Research the Organization: Look into how the charity operates and how funds are allocated. Check their financial transparency, such as reviewing their annual reports or IRS Form 990 filings, which are publicly available for nonprofits in the United States.

2. Impact and Programs: Understand the specific programs and services the charity offers. Ensure these align with your values and goals for supporting cancer patients and survivors.

3. Efficiency and Accountability: Evaluate the charity’s efficiency in using donations. A reputable organization should spend a significant portion of its funds directly on programs and services rather than on administrative costs or excessive salaries.

4. Feedback and Reviews: Seek feedback from beneficiaries or others familiar with the charity’s work. Online reviews, testimonials, and word-of-mouth can provide insights into the organization’s reputation and effectiveness.

5. Stay Engaged: Even after donating, stay informed about the charity’s activities and outcomes. This helps ensure your ongoing support is well-placed and contributes to meaningful change.

We also need more places giving disenfranchised cancer patients and survivors a voice like IHadCancer does. This is a powerful thing. Organizations aren’t fighting for us in the way that we need to be fought for. 

Not only are late-stage survivors an often discarded and forgotten group,  there are basically no doctors who are medically equipped to help us. 

There’s no one fighting to make sure our group is protected and that the members in danger are defended. If I was going to operate a cancer foundation, I would focus on that first.

Photo courtesy of Unsplash.