Green-Eyed Monster Seeing Pink – III

October 23, 2007 at 9:39 pm (Uncategorized)

Despite my understanding of my inner jealousies (and my resolution to fight against them), I was struck by the fierceness of my response to the Safeway breast cancer drive. From one perspective, my reaction made some sense. Diseases compete for research money from the federal budget. I just spent about an hour trying to find exact, current dollar amounts allocated to disease research — in general and per disease. Since I’m not getting paid to write this essay, I gave up after wading through the thicket of partisan nonsense that is President George Bush’s 2007 budget (feel free to examine it on your own: http://www.gpoaccess.gov/usbudget/fy07/index.html). As best as I could decipher, amidst all the back-patting about health care in America was getting better and cheaper every day under Bush, the two main federal research agencies, the Centers for Disease Controls (CDC) and the National Institutes for Health either lost funding or maintained the same level in a three-year period. For instance, between 2005 and 2007, the CDC’s annual federal budget went from $6.1 billion to $5.8 billion. NIH’s hovered around $28.4 billion for the span. Nowhere in the document could I find (but I did quit looking after a while) a breakdown of these funds. How much of the NIH’s money goes to actual cancer research versus the President’s bioterrorism shield or his abstinence-only sex education that is supposed to cure us of AIDS? Are grants to research universities included in these numbers? I eventually dug up a 2004 New York Times article that approximated Congress’ appropriations for public health initiatives, medical research, and bioterrorism as $50 billion for that year. The National Cancer Institute (which is part of the NIH) maintains a helpful web site that does everything the President’s doesn’t: provide information. They claim to have spent $551 million on breast cancer in 2007 (down from $560 million in 2005); prostate cancer got $305 million in 2007. You can see the other figures at their site: http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding. Nowhere could I locate data about total federal expenditures on sarcoidosis. (As a final note to this barrage of numbers, I must repeat that I did not dedicate enough time to sort through the lies, misrepresentations, or partial reporting that seem to characterize any discussion of American fiscal policy, no matter what your political leanings. Why should it be so difficult for an average US citizen – and a fairly Internet-savvy one at that – to find basic information about how her government is spending her tax dollars)?

At first, I thought to myself, “Wow. $50 billion is a lot of money to spend on medical research. Maybe I shouldn’t feel like there’s a limited pot of resources and that cancer and AIDS are getting all the money.” But then I started looking at defense expenditures. Our country spends $12 billion each month in Iraq. In 2006, we spent $100,000 every minute in Iraq. One look at those numbers and I began to wonder if maybe there isn’t a zero sum gain aspect to dipping into the federal pot. In other words, what the soldier takes, the cancer patient doesn’t get; what the cancer patient takes, the sarcoidosis patient doesn’t get. It’s a terrible way to look at the world, but with a limited amount of dollars to go around, it is, in many ways, accurate.

Maybe you’ve noticed my conscious efforts up to this point on my blog to remain mostly non-political. After all, republicans, democrats, libertarians, socialists, non-voters, whatever, we all get sarcoidosis — and cancer and AIDS, for that matter. I’ve never wanted to disgust — and lose — my readers with my politics. “Disease transcends political parties,” has always been my motto. But, now, I can’t help but consider the possibility that disease and politics aren’t more intertwined than I had previously thought. When I ponder those $100,000 we spend in one minute in Iraq, I wonder what researchers could discover with just a couple hours’ of funding at those rates about tumor necrosis factor in sarcoidosis, or the relationship between exposure to insecticides and the contracting of auto-immune diseases. I don’t have strong feelings about “bringing the troops home” instantly; and I certainly don’t want American forces fighting in my name deprived of the equipment and salaries they need. But, as I scrolled through dozens of pages of political jargon in the President’s 2007 budget, I would have been blind not to notice that a nation’s budget reflects its priorities. And, dear readers, curing cancer, sarcoidosis, or a hang-nail is not the goal America’s leaders right now.

Nevertheless, my visceral response at Safeway to the ongoing breast cancer research fundraising wasn’t about limited tax dollars and our current model of funding disease research. If it were, I would throw up my arms whenever I read about another case of MRSA (Methicillin-resistant Staphylococcus aureus) in the newspaper, and bellow, “What about me? My chances of contracting this awful staph infection are much higher than the average person’s because of all the surgeries and hospital procedures I’ve had performed. Look! MRSA kills more people in this country than AIDS! And they’re spending nothing on it.” (In fact, it was almost funny that the CDC set aside $5 million for MRSA research in the wake of the recent hoopla. I’m not sure $5 million would buy enough latex gloves for the year.) No, my thoughts on matters budgetary came later. My nasty response to the kind-hearted cashiers proffering pink water bottles and pink pins transcended the cold, hard lines of money and the administrative battles waged to win it. My jealousy was nothing more than disease envy.

I’m sure anyone who has ever had cancer, or even a close call with cancer, or a loved one with cancer, is wondering how I could possibly claim to be jealous of contracting such a terrible disease. Rationally speaking, I’m not, of course. Remember, we’re dealing here with lizard brain. My jealousy wasn’t about becoming deathly ill. It was about the “benefits” of having a disease that is universally known, that has a treatment protocol that causes side effects people easily recognize, and that people assume a patient is brave for overcoming. Cancer patients probably don’t frequently get asked, “Now, what is it you have? Sarc-what?” I hope people know that cancer takes a while to get cured or to kill you, unlike with sarcoidosis, in which the chronic nature of the disease seems to downright baffle the world. I hope cancer patients don’t get cornered in stores and asked, “You’re not still sick, are you?” as I and others with sarcoidosis have been. Chemotherapy frequently leaves the cancer patient bald. When you see an emaciated, bald person, you don’t think to yourself, “That poser is trying to imitate Michael Stipe.” Instead, you might tut-tut inside your head and muse, “What a plucky survivor she is.” Your average sarcoidosis patient who has received the most common therapy — corticosteroids — simply appears bloated and maybe fat. I wonder how many cancer patients get told, “Well, you don’t look sick to me, dearie.” Or, my all time newest favorite, “Maybe you wouldn’t feel so sick if you lost a few pounds, honey.” Now, my non-lizard brain knows that people are dumb about dealing with disease and mortality of any stripe, so I’m sure cancer patients have their own list of insensitive and rude things they get told all the time, including mouthy sarcoidosis patients who ramble online about having disease envy.

Really, I’m not trying to be rude or obtuse. What I’m trying to get at is that sick people want to be recognized — not as heroes or martyrs or even necessarily as “survivors.” But they want to feel like a few people in the world give a shit that they are sick and care enough to want to make that sickness go away. That’s what Safeway is doing for breast cancer. By launching such an omnipresent fundraising drive, the company is, in essence, telling the world’s cancer patients that they matter, that money to cure them should be raised, that their pain and struggles are not unfolding in a void. I believe that those of us who are afflicted with sarcoidosis or other weird diseases too often feel like our illnesses are played out in a black hole of knowledge and compassion. Too often the very same doctors and hospital staff who are supposed to provide us with care and comfort end up doing their own version of, “Well, you don’t look sick with your sarca-whatever.” I will even admit that the recent news of September 11, 2001, firefighters getting sarcoidosis in high numbers made me hopeful that more people will learn of my disease and care about it.

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