Illusions
Cathy Seipp at Cathy's World Blog has a post on lung cancer which asks the same question I do. Why is it that breast cancer and other illnesses get so much more funding than the major diseases that kill both men and women such as lung cancer and heart disease? Some people have said to me that lung cancer or heart disease is avoidable--and therefore, not as deserving as something like breast cancer. Afterall--the former happens to people for "personal decisions" I am told. Bad health decisions account for fewer cases of many diseases than we realize. Rationalizing why someone gets a particular illness may make other people feel good but it is just an illusion--a way of distancing one's self from the person with the disease. Ms. Seipp's description of the typical interaction with a disillusioned soul is accurate:
People want to believe that our motality is within our own hands--that somehow, if we are virtuous enough, disciplined enough or just plain relaxed enough, nothing bad will happen. But eventually reality wins out and we are left to cope with an illness in the best way we know how. I hope that I learn to cope as well as Ms. Seipp.
Cancer does have a couple of upsides. One is that you can put the fear of God into people with hardly any effort at all, and occasionally, I have to admit, I do this when they start waving their illusions around in front of me. “But…but…you never smoked? Not at all? So then…you lived with a smoker, right? You worked in a bar?” Etc. Mostly I just smile and answer the usual series of “no”s. But sometimes I say, “I know you’re looking for a reason why you’ll never get this, even though I did -- sorry, can’t help you.”
People want to believe that our motality is within our own hands--that somehow, if we are virtuous enough, disciplined enough or just plain relaxed enough, nothing bad will happen. But eventually reality wins out and we are left to cope with an illness in the best way we know how. I hope that I learn to cope as well as Ms. Seipp.
posted by Helen at 4:02 PM
30 Comments:
Yes! No offense to the pink ribbon folks, but as one whose closest male relative was seriously debilitated by a heart failure condition caused by a weird pericardial virus (incidentally, died with, not of, an adenocarcinoma as well, making him a perfect DrHelen-Cathy Seipp twofer) - he was not fat, no cholesterol issues, never smoker, etc., I tend to believe that we take wildly irrational approaches to allocating research funds.
There should be a rational life-years formula applied to government funds, and then let the foundations raise donations to their hearts' content. But the NIH allocations responding to pressure groups is a morally bankrupt practice.
I must agree with the previous post and comment by Dr. Helen. The unfortunate arguments that heart disease and lung cancer are 100% preventable simply reveal how little the public understands about cancer or the nature of disease. I believe that the reason for the generous funding that Breast CA and HIV research recieve is simply that they are politically expedient causes. They have the backing of celebrities and politicians.
And modern medicine is still attacking cancer the same way it has done for 30 years. It will take a drastic paradigm shift to truly develop a "cure" for cancer.
I think however that Duane is a little over-the-top in referring to the NIH allocation as morally bankrupt. The NIH carries out the research that the public demands. It is after all a federal institution.
To anonym hat gesagt:
Yes, the NIH carries out the research that the public demands--but should the public really run who gets funding for healthcare given the ignorance of many people to health issues? I certainly hope that we never have socialized medicine in the US--those with the most popular causes would get treatment while the rest of us would suffer.
I guess AIDS is the big white elephant here. It may be preventable, but those homosexuals can't help it, unlike smokers, eaters, etc.
When my father died of lung cancer in 2001 it came as quite a shock since he lived his life determined to live to 110 by following all the rules ie. didn't smoke, ate healthy food, exercised and went regularly for his check-ups. He was diagnosed Stage 4 within three months of his regular check-up and died three months after diagnosis. My mother was diagnosed with stage 4 cancer about four months after my father died(they were divorced) yet she is still alive and her cancer count went from 3000 to 64. What is so odd is that she never exercise, was a little over-weight,and smoked but she was diagnosed with ovarian cancer. Made me acutely aware that no matter what I am going to die from something.
It is unreasonable that cancer research funding is so under-funded compared to AIDS which already has an effective cure, that being, stop spreading the disease by either using condoms or refrain from having multiple sex partners.
If a person stops smoking this does not mean they will not get cancer but if people stop spreading AIDS this means that people will not get AIDS. We may get cancer but we really can prevent the spread of AIDS. Encouraging AIDS research is only encouraging people to either not use comdoms or engage with multiple sex partners but the insanity is that our culture has determined that we haven't control over the spread of AIDS but if smokers just quit they won't get cancer.
AIDS and Breast Cancer get so much funding and attention because they are hitched to political causes. They have become inseparable from the Democrat supporters. Support The Left, you must support AIDS/Breast Cancer research.
Plus, Breast cancer gets so much more funding because men are not really wanted in our society. Every dollar that goes to prolong a woman’s life is good, and it deprive us of the ability to prolong a man’s life. After all, men are nothing but rapist wife beaters.
To anonym hat gesagt:
I just wanted to say I'm sorry about the loss of your father. My father also died in 2001 of a rare cancer-duodenal which took his life in 3 weeks so I am acutely aware of the devastation of cancer. He was in his 60's but had also been very healthy. When I had a heart attack in 1999, he went with me to the hospital and the staff tried to put him in a wheelchair as they thought he was the patient! I do hope we can find a cure for all forms of cancer as well as heart disease because we can save the greatest number of people. Aids carries with it a political message and again, like breast cancer, has a huge lobby.
My sister-in-law died of her lung cancer this spring (after a year and a half). She did absolutely nothing to "deserve it". She didn't smoke, her parents and husband didn't smoke and she worked in a smoke free office. Her older brother smokes like a chimney and drinks like a fish, he is, naturally, ok. But as was said above we all die of something.
But the real problem is how research is done in this country, when a relatively few activists can hijack much of the process.
It's marketing... pure and simple. The people trying to raise money for whatever disease they want to combat must market that disease with the intention of getting people to give generously. The people marketing breast cancer awareness just did it better.
They roped in politicians by tying it to a current cause (the feminist push for better treatment of women), they roped in young women with the fear of future mutilating surgery, they roped in the entertainment division giving them the above 2 reasons to spout about it and make themselves look good...
In the end - they get the money and other research projects don't. The AIDS marketers were able to do exactly the same thing - since the advent of AIDS went hand in hand with a push to bring homosexuals into the mainstream.
People looking for funding to fight their own disease need to look at the 2 models above and figure out how to bring their own concerns to the front in a way that catches not just attention - but real concern from people who will donate... a difficult task and even impossible without a little luck (call it the stars coming together at the right time) and a disease that really can effect the population in general.
For that matter - the same type of thing has been going on for many years... think of the work to stem polio and the fight against TB... once again matters that could effect anyone in the population - effectively marketed to bring in research dollars.
This is the way the American system works and I don't forsee a change in the near future. This means people wanting funding have their work cut out for them.
Dr. Helen, the diagnosis of cancer carries with it a huge toll on the person with the diagnosis. Going through all five stages of grief, but without, at the time, a dead loved one. When my sister died of ovarian cancer in 1990 at the age of 45 I was devastated, two years after that my dad went through successful chemotherapy for thyroid cancer. In 1996 my first wife died of Asthma also at age 45 and my dad then died in 2000 at age 79 because the thyroid cancer came back and metastasized. Each time, looking back I had to deal with why? And that was a metaphysical why, not a biological one. The biological why I could understand.
So too today, as I grow older, and more family and friends die of a variety of causes one has to ask why?
Funding for disease research should be, to my way of thinking parcelled out according to the severity of the illness and the number of fatalities. That won't solve the problem, there will still be those who shill for this or that boutique illness.
I'm reminded that more men die of prostate cancer than women die of breast cancer. Prostates are not "seen" and breasts are. prostates are "old men's problems" and breast cancer affect somewhat younger women largely. Perhaps this is the reason for the disparity.
The breast cancer thing is also tied to a great deal of false advertising. The other day on the radio, I heard a commercial that stated, "This year, one in nine women will be diagnosed with breast cancer!"
Well, I am no statistician, but even I realized that if this were true, on average, *every* woman would be diagnosed with breast cancer in a nine year period.
Maybe one in nine women over the course of a lifetime, but even that sounds high to me ...
I agree with Thresa.
As a man who lost his 38-yo fiance to Lung Cancer, I find the discussions regarding funding as interesting. Everything needs more funding, no?
And I think those are healthy discussions.
But as I wrote on Cathy's site, "why" a person gets cancer is irrelevant to the family left behind. My Love had two teenage children whom I help raise. I can assure you that they don't care one bit about what aspect of their mom's lifestyle "caused" her to get cancer. They can each point to old men & women who smoke and don't have cancer. I find pointing blame for someone's illness - any illness - to be disgusting.
Yes, it would decrease the rates if people limited certain behaviors. But part of "living" is doing things you want to do. And part of modern medicine's role is to help people live their lives as they choose.
The whole concept of "blame" for an illness just gets me so upset I can't find the words. Blame is irrelevent when a mom isn't there for her daughter's 16th birthday. "Why" doesn't matter.
ugh
Well, as far as AIDS money goes, it's worth remembering it began as an aggressively spreading and uniformly fatal disease, almost a plague, which affected young adults. People were very worried for a while, and it's still the case that in Africa AIDS has a devastating social impact because it disproportionately takes young parents and workers, and deprives children of their parents and old folks of support. AIDS is far less of a horror now, but only because that huge bolus of money led surprisingly rapidly to a big increase in what we know about viruses and a number of effective therapies. (Incidentally, that knowledge will help greatly with other viral diseases, e.g. bird flu.) It may be reasonable to re-adjust funding now, but it was probably a legitimate "emergency" response in the 80s.
Also, funding does tend to go towards the problems that scientists find interesting and "doable." AIDS is one of those, because it doesn't seem impossible to interfere with such a simple organism, and because you will learn a lot about how genetics and the basic process of infection works -- interesting stuff, very basic.
Lung cancer is on the other hand is probably a very depressing disease. The clinical outcome is terrible. And heart disease has been very, very well studied. I'm not saying there isn't much to learn, but everything that was easy to learn about it has been learned. The remaining problems are depressingly difficult, the kind of thing that only yields to wild luck or decades of patient effort. If you're a young scientist, this is not as good a route to early success and tenure. Fact of life.
That said, I completely agree that the funding priorities are in danger of being screwed up. But, ironically, they are in danger precisely because of the involvement many people here wish for. If the NIH just quietly doles out money out of the limelight, rough justice is probably served. But once people start organizing to demand new priorities, watch out. For every heart disease advocate with a terrible personal story, there is another with lung cancer, prostate cancer, Alzheimer's, and yes breast cancer. Pressure group politics is never a good way to run science, any pressure group, no matter how well-meaning.
If I had to suggest a change, I'd suggest that NIH be funded not out of general funds, but out of a tax on medical bills. And everyone who dies gets to leave one vote to whomever they wish, to exercise in saying where the money goes. Thus, the most votes will go to heart disease victims' families. Of course, if the Smiths got a vote because Uncle Frim died at 98 peacefully of a MI, and Cousin Sue Smith (age 14) is struggling awfully (but not yet dying) with cystic fibrosis, then they might direct their vote in a non-obvious way, to CF research. Well, vox populi. But no one could argue that the power to decide was inappropriately allocated.
I went to the emergency room a couple weeks ago for cracked ribs.
They took me from x-ray, back to the room, then back to x-ray for more pictures of my upper chest area.
They told me that I have granulated nodule about the size of a quarter on my upper right lung. 40/60 chance it's not malignant.
Life doesn't suck (well it might if you're being tortured).
It's pretty damned nice.
A week ago at 10am I was at work shuffling papers from one stack to another.
At 1030am, I was strapped onto a gurney, oxygen mask on my face, IV bags in each arm, an EKG readout that made one of my EMTs say "I've never seen anything like this on someone that wasn't dead by this time."
By 11am, everything was back to normal.
I wound up spending the night in the hospital, but it wasn't because my heart had gone wild. It COULD have been something very serious, but other than scaring the crepe out of me, it wasn't.
Life IS pretty good.
I recently had heart surgery at 34 years old, and can tell you that even among doctors there exists the idea that someone my age with a problem like this must have brought it on themselves. During my first ER visit the doctors would not stop blaming it on a trip to the bar I'd had two nights prior. This was so frustrating (and humiliating, truthfully) that I haven't had a drink since -- that was three years ago -- but landed in the ER three more times and finally had surgery to try to stop it from happening.
The truth is, I was probably born with a defect in my heart that would have progressively worsened until I became completely disabled. (I was on my way.) Today I don't drink, I don't smoke, I don't do drugs, I exercise -- and all those things were true while I was getting hauled off to the ER, too.
" ed said... I guess AIDS is the big white elephant here. It may be preventable, but those homosexuals can't help it, unlike smokers, eaters, etc."
AIDS - 40 million people currently infected, including 2 million children. 20 million people dead since 1980. Currently 3 million dying every year. Current life expectancy in Africa: under 50 years. Without AIDS, over 60 years.
Some white elephant, Ed.
And while, we're only statistics...
Lung cancer: 1.2 million new cases in the world each year, 1 million new breast cancer cases, 4.9 million new HIV infections (750k of them children.
Every time I see women out at events related to breast cancer I also see the invisible men who are diligently working and supporting those women so that said women had time to march in the street. Even without breast cancer, said men will die younger than the women they've supported
There's a lot of anger here towards anyone stating that perhaps the amount of attention given to Breast CA or HIV research is undeserving. It is not. Huge inroads have been made in Breast CA, mainly through educating the public about early detection and getting treatment early. New treatments have made only incremental increases in Survival. While the number of new cases in lung CA cannot be changed at present due to its biology and our current technology - a HUGE impact can be made through education on the incidence of HIV infection. Prevention has always made the largest impacts in Public Health. For HIV we don't need a silver bullet - we already have the means of preventing the spread of ~90% of new HIV infections. But for those who are stricken with Lung CA ~80% will not survive.
I think ed meant "elephant in the living room" rather than "white elephant." And it is, isn't it? In contrast to cancer, AIDS is pretty much entirely a "lifestyle" disease - few contract it "innocently" through blood transfusions or other means completely out of their control, compared to those who contract it through voluntary behavior. I have a whole lot of sympathy for its victims - and it's a little misleading to characterize having relations with your unknowingly infected spouse as "voluntary behavior" in the same sense as IV drug use or unprotected risky sex - but AIDS doesn't just drop out of the clear blue and nail you, the way cancer can.
I also don't begrudge the money spent on HIV/AIDS research, since (as has been pointed out) much good has come of it, and when it first started its whirlwind trip around the globe it looked unstoppable and apocalyptic. But I fear cancer a lot more, since I don't do any of the things that could net me AIDS but have risk factors I can't control for Big C, along with everyone I love.
My Father may be the only person i've ever known or read about to live more than 4 years after being diagnosed with pancreatic cancer.
I don't know how familiar any of you are with that form of cancer but it is one of the very worst. 98% of all patients diagnosed with it are dead within 12 months.
In 2000 at age 61 he was diagnosed with it. It happened on my birthday (didn't turn out to be one of my favorites). Everyone in my family was told by medical professionals to get him ready to die. They said the best thing was to make him comfortable till the end.
It was the most difficult thing deal with in my life. Watching someone so dear to you just fade away and not having any power to help. Fortunaty my Mom and Dad had a great attitude and treated the whole thing as no more than a bump in the road.
After surgery and all the follow up visits for 3 years, his doctors finally told him that he was just fine, in great shape, and that they didn't need to see him till his next regular 6 month check-up.
Every day since his operation has been a gift from God. Everytime I talk with him I'm aware that I shouldn't have a father right now.
In my eyes, despite all that surrounds me and threatens to bring me down, life is good.
-Tp
As a physician, I have dealt with many flavors of the mortality problem. The easiest ones to handle conceptually occur late in life, when all can accept the end of a story with many chapters.
The hardest ones, the most unfair, are those which threaten children or younger adults. They are so much harder to comfort, much less understand. But people are surprisingly resilient. Few curl up in a ball and whither away. Most fight, or try to, clinging deperately to this world.
While it would indeed be wiser to have a less political approach to medical research, I think it would be wiser still to consider the value of a good metaphysician in these matters. Why do we suffer? What does it mean? Why am I here?Medicine has no useful answers to this most basic human question, however much it likes to think otherwise. C.S. Lewis is worth a try, in his book The Problem of Pain, a treatise on human suffering.
In it he confesses: "You would like to know how I behave when I am experiencing pain, not writing books about it. You need not guess for I will tell you; I am a great coward." It's a wonderful book.
Duane said,
"There should be a rational life-years formula applied to government funds, and then let the foundations raise donations to their hearts' content.
I agree, with the caveat that I'd add "anticipated likelihood of imminent success" to the life/years formula. That is, if two diseases score the same based on a "life/years formula" (I imagine this means a formula that considers morbidity rates and the average shortening of life it causes), then more money should go to the disease where a cure appears to be imminently achievable.
In still other words, if throwing $100 million at Disease A appears likely to result in a cure in two years, while throwing $100 million at an equally-lethal Disease B may or may not result in a cure in ten years (because nobody really has many promising leads), the money should go to the surer thing.
Pogo- not to get theological and philosophical on you all, read "A Grief Observed" for Lewis' own reaction to the pain he himself felt when his wife died of cancer (he originally published it under a pseudonym).
He questioned a lot of his own intellectual analyses of suffering, then came back to an accepting conclusion. That forever cured me of glib conclusions, I think.
I know I am late to the party, but, the fact that we are not in control as much as we may think scares the life out of most people. what do they fall back on to deal with life?
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