I got a comment recently from a reader who was unhappy with the International Myeloma Foundation. It seems that the reader’d been banned from the IMF listsrv because they had the temerity to comment that the new rules on health insurance were bound to help some who’d been funding their own treatments –or foregoing treatment– because they couldn’t get health insurance. Some of the people going without treatment were too economically pressed to purchase health insurance and others were denied it on the basis of preexisting condition. I can relate, I was hit both ways. While I did have health insurance through the company I owned, payment for treatment for Multiple Myeloma was denied on the preexisting condition Catch-22. Even if I had been covered, my contribution was still enough to devastate me economically. Thank God I had the VA to cover my expenses.
At any rate, to comment that the reduced costs and the eradication of the preexisting ailment clause still ejected this person from the online forum. I understood ho this felt because I too was summarily thrown out on my ear for commenting that I hoped cancer research wouldn’t be cut in the push to reduce spending. The IMF is not the only forum that censors. Other forums will quietly edit posts or withdraw them. I don’t so much mind the removal of posts which cause discomfort to the publishers of the forum, but I despise the altering of someone’s words. There is never any excuse to modify what someone said into something a publisher wish they’d said. It stops being the author talking, replaced by the publisher talking while masquerading as the author. It’s unacceptably disingenuous.
We have to remember that some of the forums in which we participate are funded by companies or organizations with strong financial ramifications in cancer care. We need to be aware of the underlying agenda of the various forums out there. When it comes to cancer forums there is a element of caveat emptor involved. For example, when people like me state firmly that jumping into cookie cutter treatment instead of weighing all of the variables and designing a treatment regimen customized to the specific patients –or to bypass therapy altogether at least on an interim basis, it gives heartburn to the pharmaceutical manufacturers who make the treatment compounds.
I raised absolute hell with one news agency/forum operator for publishing an article which stated that a cure for Multiple Myeloma was imminent. The headline was blatantly false. Although the article explained in its content that a success by a then untried treatment theory might have ramifications which might lead to a better understanding of the mechanics of Multiple Myeloma, and thereby present a possible clue that might create a path to a cure, it was all pie in the sky. It was the kind of promotional hype whose purpose was generating investment dollars, not the announcement of great news for Multiple Myeloma victims. I get very upset when promotional copywriters pass their propaganda off as news. Those of us who suffer from the cancer don’t need to be given even the hint of false promise, yet it’s done all the time and considered acceptable behavior in the halls of advertising. It’s bad enough that we get television infomercials set up to appear like a news anchor desk as so-called experts are “interviewed.” To be fed this kind of malarkey is simply wrong because it exploits hope of those whose lives or the lives of a loved one are in jeopardy.
While it’s sad, a lot of the statistics we are shown are skewed or based on irrelevancies. The purpose is to get the patients dictating to their oncologists or hematologists in favor of one therapy or another. While patients should play a strong part in the implementation of their medical care, it’s doctors who should be determining the medicinal specifics of that care. We’re not talking about a skin cream to reduce zits, we’re talking about serious toxins that interact with the most basic elements of the body’s machinery. I don’t know about you, but I want a medical team that has looked me over to exacting certitude and then choosing compounds that exploit my body’s strengths while favoring it’s weaknesses helping me select a therapeutic regiment, not some freshly minted graduate with a degree in marketing with access to a set of promotional vehicles. I don’t want my doctors choosing a therapeutic regimen based on “what’s hot” either.
Then we also have the political traps. These days it’s tremendously easy to offend a political view. My hopes for Bush’s administration favoring cancer research stepped on one of these land mines. The same is true of the reader who made a left handed reference to the affordable care act. You can almost feel publishers shudder recalling the bear trap of Susan G Komen’s self-assassination by taking a political view and applying it to soliciting funds for cancer research. Taking a side can be tremendously risky. However, it’s a pretty far stretch of paranoia to believe that forum needs to prevent anyone from stepping on what may be a land mine for the publisher but merely a topic of discussion for the forum participants. It’s like forum operators are more frightened by permitting a sideswipe of a political issue than they are of the cancer.
Whether it’s agenda or fear of agenda, there’s a lot of bad information and a lot of information restriction throughout the media. It brings to mind two of the oldest sayings: Don’t believe everything you read, and, Be careful what you say.