Friday, March 20 2009
I mentioned a while back that I have some problems with the research/fund-raising agenda most disease organizations pursue. I want now to be more specific: most of these organizations are not helpful, and possibly detrimental, to the lives of sick people. You know the organizations: the sort that sponsors showy fundraiser walks, always clad in upbeat copy about how you’ll be ‘making a difference’ or ‘bringing hope’ or ‘changing lives’. It all sounds great, I know, but my advice is “don’t walk” – at least not until you’ve heard me out.
In that earlier post, I quoted Harold Varmus from his interview on the Daily Show: “you don’t want the disease advocates warring with each other”. Dr. Varmus was speaking as former director of the National Institutes of Health, where balancing competing research interests was a major – and difficult – part of the job. He apparently did a good job of balancing, but I think the problem is bigger than the NIH. There are a lot of disease advocacy organizations in this country, and they not only compete with one another for funding, but with other people and priorities. Most of these organizations channel their resources towards a very specific goal, research for a cure – which is a worthwhile goal, but not the only or most obviously-worthwhile goal. The kind of tension Dr. Varmus mentions – between basic science and disease-specific science – exists across a number of other dimensions, too.
Most of these organizations operate on a model that, as far as I can tell, was pioneered by breast cancer activists. There was a time when breast cancer was an underfunded, unknown area of medicine; also, dinosaurs roamed the earth. Today, everyone knows breast cancer exists, the federal government funnels billions of dollars into breast cancer research, and the pharmaceutical industry throws tens of billions more at the problem. By any account, this model worked very well for breast cancer as a “cause”, so no surprise that it’s widely imitated.
My own experience with this model is largely through the CCFA, of which I am no longer a member; I gather that nearly all disease orgs. follow the same model. The reason I am no longer a member of CCFA, and the problem I have with these organizations in general, is that they reduce the entire experience of their particular disease to a single problem – lack of cure. This attitude ignores a lot of any given person’s struggle with illness; even for a disease as specific as breast cancer, that experience is going to vary from patient to patient. I know two women dying of breast cancer. One – comfortably retired – puts a lot of stock in the various “for-cure” organizations. The other – a single mother struggling to pay her bills and put her kid through college – doesn’t; for her, they’re no help at all.
In my case, as I have learned more about Crohn’s, I’ve learned that lack of a cure is not my only or biggest problem – and meanwhile CCFA ignores the things that are problems for me. In general, the focus on “cure” ignores the real concerns of many of the very people these organizations claim to represent. The result is that some people benefit from these groups, and many people don’t. What’s worse – at least to me – is that there is no introspection, no reflection in these groups; they never ask themselves whether their priorities reflect the most morally or politically salient problems of illness in this country. The result is a vast and nebulous cloud of disease organizations where the patients – and the diseases – are subordinate to the organizations.
Take the focus on cures: who benefits from this? Nearly every organizations’ stated goal is to find a cure for the disease. But science isn’t a stripper: throwing money at it doesn’t make things move any faster. A cure will take time – possibly a lot of time. Especially if the disease is terminal, it’s likely that a significant number of sick people will die before a cure reaches them. So the focus on cure benefits only those patients who 1a) have the disease, but 1b) will not die from it before the cure is available, or 2) those patients who will develop the disease when the cure is available. In the meantime, a lot of people will suffer and die; what are the organizations doing for them?
Yet even if the cure for every disease were found tomorrow, there would still be problems. Consider some of the new biologics being approved for diseases like RA, MS, and Crohn’s/UC: a years’ worth of remission-maintenance dosing can run into the tens of thousands of dollars. Medicines are getting a lot more expensive, and lots of people who can’t afford them are suffering for lack of money. Part of the problem is the research-driven agenda of the advocacy organizations: they subsidize expensive research for novel drugs. But expensive research produces expensive drugs, and meanwhile a range of preventive measures and non-drug interventions get ignored (not to mention Dr. Varmus’s concerns about basic science).
Let me stress how perverse this is: think of the several diseases that we know how to prevent but not cure, whether through vaccination, proper nutrition, hygiene, or whatever. Left to disease organization research, all of this knowledge would have been ignored in favor of “the cure”. Moreover, for-cure research is overwhelmingly focused on pharmaceuticals, to the detriment of every other aspect of health care. The kinds of changes in care coordination and management that might make a disease more livable get nothing; the assumption seems to be that it’s okay if you’re miserable, so long as someone somewhere is working on a cure (even if you might not live to see it). Yes, a cure would solve a lot of problems – but meanwhile there’s a lot that can be done to improve the lives of sick people.
These tensions are all the more acute given the current debate in government over the future of health care. By focusing on research, these organizations are missing a once-a-generation opportunity to transform the experience of illness in this country. Look at these lists, the supporters of major coalitions mobilizing on health care: Divided We Fail, Health Care for America Now!, or National Coalition for Health Care. Where are the disease advocacy organizations? Even worse, look at this list of participants and observers at the White House Forum on Health Reform – and ask the same question. This is a pivotal time for millions of people suffering from chronic and catastrophic illness, and yet precious few of the organizations that claim to be working on their behalf are at all engaged. This should be seen as – and is – an appalling failure on the part of these organizations.
As a general rule, I find it not worthwhile to reward failure and encourage ignorance. So I don’t give money to disease charities. I don’t walk or fun-run, I don’t wear a rubber bracelet, and I don’t give money to people who do, because these organizations’ priorities are nowhere near my own. This isn’t to say that you shouldn’t support these organizations, but you should do so only if you’ve thought about it carefully. If you’re sick, think about whether these organizations are really doing what they say they are; if you’re not sick, think about your reasons for supporting these organizations, and whether there might be a better outlet for your interest.
And while you’re thinking, think about what you can do that’s truly helpful to the lives of sick people. To me, as a sick person, one of the worst aspects of these organizations is their aggressive insistence that the best way to help sick people is by funding for-cure research. That is a lie. Sick people face a lot of challenges, most of which cannot be deferred until a cure is found. If you’re sick, start talking about those challenges as you face them, and try asking for help.
If your concern is a specific person, get more involved in their life; ask them what you, specifically, can do to help them, specifically. For my friends who are sick, I make an effort to be there – to be available, to help them when they need it, maybe cook a meal or drive them to an appointment, but mostly to remain a presence in their lives. Look at the posters and the ads for these organizations: they’re clearly suggesting that sick people can only find community among their fellow-sufferers, as if our only hope to rejoin humanity is via the distant promise of a cure. That, of course, is false – and you can prove it false simply by refusing to be marginalized if you’re sick, or by being a friend to someone who is sick.
Now that the weather is improving, lots of these organizations are planning and recruiting participants and soliciting donations for their sorts of walks, runs, and cycling trips, et cetera. You might already be seeing ads, or getting emails, or walking past a sign-up sheet posted in the break room – and maybe you feel a little guilty about not throwing in your twenty bucks. This year: don’t. Tell yourself – and anyone who asks – that you’re committed to directly helping the sick people you know. And then go do it.