Don’t Walk

Friday, March 20 2009

dontwalkI 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.

(photo from http://www.flickr.com/photos/bhermans/2445663522/)

25 Responses

  1. Ileana March 20 2009 @ 2:33 pm

    Duncan,

    Please don’t ever stop this blog! I don’t know how others feel, but I think this is one of the few blogs that are worth reading. I don’t know that you are always right (nobody is always right), but you do hit the nail in the head so often and so well.

  2. Lisa Emrich March 23 2009 @ 1:06 am

    You have just expressed a very common theme amongst the MS Blogging Community. Services and financial assistance are needed for patients NOW. Sure, a cure would be nice, but in the meantime we may need help.

    And then to make things worse, once you participate in a fund-raising effort, the continuous calls to action will never cease. The patients are asked to become the fund-raising recruiters. It gets to be much after awhile.

    However, I do have to admit that I did participate (and fundraise) for the MS Walk the first year after my diagnosis. It felt kinda good to do, but I had no idea the challenges which lay ahead at the time. Now, there are lots of mixed feelings……..and I’m not “walking” this year.

  3. dx March 23 2009 @ 9:15 am

    @Ileana – thanks! I have no plans to stop.

    @Lisa – I confess that I encouraged donations to CCFA on my behalf at one point, but not anymore. For a person newly diagnosed with a serious disease, there’s something comforting in the carefully cultivated “hope” offered by these sorts of organizations: you realize you’re not alone, and that helps. But once you learn the “hope” they’re offering doesn’t address the needs you’re experiencing, it’s easy to get disillusioned.

  4. hydropsyche March 23 2009 @ 7:07 pm

    Thank you for this post. The advocacy organization for my condition SAA does seem to pay lip service to “the cure”. I was grateful to discover that most of the SAA’s research seems to be focused on the genetic and biochemical causes of the condition. My understanding is that there is a walk for AS every year in San Francisco, but in general it’s not a well-known disease (although it is more common than many of the diseases that do have walks) and there’s never been much of a publicity machine behind it.

    On the SAA forums recently there’s been a discussion about “the cure” and about how uncomfortable we all are with that phrasing. Most of us recognize that there isn’t really going to be “the cure”. There will be new and better drugs like the very expensive biologics Duncan mentions, but we will be taking them for the rest of our lives. More importantly, beyond that, we are all dealing with the damage the disease has done to our bodies (primarily fused joints, but in more severe cases eye and heart damage), which would not go away if a cure was found tomorrow.

  5. TBTAM March 24 2009 @ 8:55 am

    Another fabulous post – this is turning out to be one of the most well-written, worthwhile blog destinations out there.

    Congrats and keep writing.

  6. Ladi March 24 2009 @ 8:58 am

    Bravo. The other problem I have with these organizations is that they often take attention away from rare diseases. If you don’t have a celebrity with your disease these days, it seems that your illness doesn’t count.

  7. dx March 24 2009 @ 9:45 am

    Hydropsyche – regarding damage, I have a similar problem from surgery: even if I were cured tomorrow, I’m not going to regrow the missing chunk of my colon.

    TBTAM – thanks!

    Ladi – celebrity is definitely a big help; part of me (ie. what’s left of my colon) still hopes fellow-Crohn’s-sufferer Dennis Kucinich will get elected President someday!

  8. John Ulvila March 24 2009 @ 5:28 pm

    As the old saw goes: More people live off of cancer than die of it.

  9. intransigentia March 25 2009 @ 2:31 pm

    Wow, and the only issue I was aware of was how little money, after the expenses of putting on the walk/run/event, actually got to doing the research and all that.

  10. Joe Wright March 25 2009 @ 6:28 pm

    Great post. Thank you.

    I responded to it in more detail than this space would allow, here:
    http://hemodynamics.blogspot.com/2009/03/dont-walk-sit.html

    I would argue that AIDS was the model for the breast cancer folks–both the more radical activists who emphasize prevention and criticize pharma, and the walk-a-thon promoters who emphasize cure research. And I think the model of coalition you might be thinking about might be found in the history of the disability rights movement.

    –Joe Wright

  11. grindcm March 25 2009 @ 11:58 pm

    Wow! I would definately say that I have yet to sit back and even consider how my money went to use when donating to these organizations. I find myself, like most people, getting caught up in the propaganda and not so much in the cause. I guess like most people we focus so hard on the problem we fail to see the solution and in this case most fail to see that ‘cure’ isn’t necessarily the most beneficial in the end. I will have to say thanks for this enlightening post and keep up the great work.

  12. Placebogirl March 26 2009 @ 7:59 am

    First up, let me say I love your blog–long time reader, first time poster.

    Like you, I have IBD. Unlike you, I don’t live in the US. I agree with everything you have said here about the “for cure” approach to many diseases, but I think it is particularly true of the ones like IBD, where there is a progressive loss of function over time. No cure can ever give me back the intestine I have lost, and I think we are so far from that point and there are so many other priorities that it doesn’t really make sense to try and find a cure (now, knowing the cause and prevention–that I would be a lot more interested in, but it still wouldn’t help the thousands of us living with the damn thing anyway).

    The sole difference between your approach and mine is I DO wear a blue bracelet. It took me nine years, and nearly dying to get a diagnosis, because even my GPs/PCPs did not make the leap to Crohn’s, despite a classic presentation. When I say “I have IBD”, people ask me if I have tried a liver cleansing diet. People where I am don’t talk about IBD, don’t know about IBD–doctor’s don’t think about IBD until it reaches up and slaps them in the face. My blue bracelet, which is my second, because I wore the first one out, gives me the opportunity to start that conversation with people, tell them a little bit about the disease (I try to avoid grossing them out–another reason people don’t know about IBD, I think), and hopefully remember it if someone they know is having chronic stomach issues, or remember that a liver cleanse diet won’t do it if they meet someone else. It’s not much, but it is something I can do, and the blue bracelet, while it is produced by the CCFA, is something I can use for my own purposes.

  13. Gaelen March 26 2009 @ 9:54 am

    oh.my.god.
    Thank you.
    Sharing this now.

  14. Aftercancer March 26 2009 @ 9:58 am

    Wow! Well done. I’ve felt like a voice in the wilderness talking about how it doesn’t really matter what new treatments we find if we can’t pay for them. Thank you for putting it much more eloquently.

  15. Katherine March 26 2009 @ 10:58 am

    I have had these same thoughts many times, but din’t dare to share them. I involve myself with the local orgs that my daughter has benefited directly from such as a summer day camp and a preschool for kids with cancer. They are treating the children while thy have cancer, not filling the coffers of a lab that may cure Leukemia, one day…. These local orgs really help us directly.

  16. scottg March 26 2009 @ 11:05 am

    I came across your site and this topic whilen on the colon club site. I have to say it is quite a god feeling to see my thoughts being conveyed by you and that you have explained my frstrations and feelngs so well..I am a stage 4 colon cancer patient Diag 4/06 dong well now but a similar fight like your own. As a patient such as yourself we understand well that a cure would be great but suffering is everything .I was blown away by a call mi made to the american cancer society when i was first diagnosed.Iwas searching for answers as to where to go to get the best treatment and a host of the usual questions.I was in fear of my life and overmy lifetime had heard of the ACS so i called. I asked them what information and what help the organization offered, They had no one to speak to me directly and TOOK MY PHONE #. No one called in a3 day span so i called back. They took my phone # again ,,,,,,,It took 10 days to call me back,,, a lifetime for someone just diagnosed,,that was sickening enough,,when i asked them what kind of help they offered all i got was referals to other sites and places..This was a local office of the charity so i assumed they would be more helpfull to local needs. They were worthless.I was blown away by the lack of regard for the people who are suffering NOW and the lack of offerings not only verbaly but counseling ,advise or financial .luckily i did not need financial help but i was truly amazed by the lack of services offered to the people with the illness currently suffering. I realized that these type of organizasions are geared toward fundraising which they do well but ignore the currently suffering and blindsided diagnosed. They raise money for the cure while ignoring the people who need now. It made me angry mostly because i know what it feels like when there are no answers and what it feels like to suffer emotionaly and physicaly and knowing there are others even more desperate for answers and help..Truly disscusted with ACS!!!
    Breast cancer is truly devistating but i find it sad that the ACS focuses mostly on that cancer and rarely promotes others with walks,fundraisers,ect. Breasts are exiting to mention,,,the colon not so much. Last note: While wating for a “CURE” for the last 100+ years, think how much avoidable suffering could have been avoided by allocating a small part of the fundraising to the peole currently suffering, we all know them,,they are our family,friends ,and or neighbors…The topic is right on!!!

  17. Nathania March 26 2009 @ 12:10 pm

    I would like to say that I agree with what you’ve said. On the flip side, there is the occasional good organization. I don’t know how I would have managed my thyroid cancer without the Thyroid Cancer Survivor’s Association (aka ThyCa). While they do contribute money to research, much of their work is done to help patients via support groups, workshops, education, etc.

    But they’re also volunteer-run. Quite different from the posh positions of the more familiar disease advocacy organizations.

  18. dx March 26 2009 @ 1:07 pm

    Placebogirl – Awareness is one thing big charities can help promote, but I think you’re doing a better job by being so proactive.

    Katherine, Nathania – I agree that local orgs., especially support groups, can be invaluable. Unfortunately, most disease charities do very little at the local/support level.

    Scottg – I think your experience is all too typical of the lack of local concern and support by many charities. I’m sorry – that must have been incredibly frustrating. By the way, where on Colon Club did you find my post?

  19. Anne March 31 2009 @ 12:20 pm

    First time visitor, first time commenter. Referred by Lisa Emrich. I concur wholeheartedly with everything! I blogged on 3/30/09 about this very subject, although I was not as eloquent as you. I tried to keep myself under 1200 words because I tend to lose my readers when I go long.

    Thank you for such insight into this subject that few dare to talk about in public forum.

    Anne
    PS. I’ll be back often.

  20. Jeanne Sather April 10 2009 @ 1:03 pm

    Duncan–excellent post! I absolutely agree with you.

    This is something I’ve written about and thought about a lot–and I need to write more. For now, I’ll link to your post from my blog.

    Thanks,

    Jeanne

  21. Martha April 10 2009 @ 1:43 pm

    Yes. I’m sure that ‘Joe Wright’ is correct that these models arose from the efforts regarding HIV and AIDS.

    For a good read, I highly recommend Samantha King’s book, Pink Ribbons, Inc. Breast Cancer and the Politics of Philanthrophy — that’s most everything in a well-researched nutshell.

  22. Joana Ramos April 12 2009 @ 4:19 pm

    I’m not going to repeat the essence of all the great comments here about the big box disease groups, and thanks to Duncan for bringing up these issues. Independent voices and critical thinking on this topic is still too rare here in the US.

    There is also much that we can do to help to set things right, which of course starts with raising awareness of what is really going on. As someone who happens to be a community organization specialist who was diagnosed in ’96 with a very aggressive type of non-Hodgkin’s lymphoma which did not respond to standard treatments, and for which I later was able to have a bone marrow transplant, I can share some ideas. We all need to speak up!

    As background, I often refer people to an 2005 editorial published in the Washington Post entitled “Too Much Research?” See:
    http://www.washingtonpost.com/wp-dyn/content/article/2005/07/16/AR2005071600941.html

    One of the reasons we do not hear the major health & patient groups calling out for something to be done about the exorbitant, and ever-increasing price of medicines ( and not always new medicines, either) is that most of these groups get funding from, or even are created by, pharmaceutical companies. Just as with medical groups and individual doctors, this has alas become the norm. The old don’t bite the hand that feeds you phenomenon. People also may feel show, there’s nothing we can do, but we don’t have to settle for the status quo. For starters, there is power in numbers, and our representatives in Congress need to hear from us.

    So what can be done? Here are some ideas on specific ways you can get involved:

    1) get on board with advocacy efforts being led by Essential Action in support of the HR 1427/ S 726, the Promoting Innovation and Access to Life-Saving Medicine Act. Personal stories of patients who who are , or have been , directly affected by the ever-escalating, extraordinarily high prices of prescription medicines are needed. More info can be found on EA’s website, at the Access to Medicines project page
    http://www.essentialaction.org/access/

    2) You may be aware that a bill called the Sunshine Act has been introduced in Congress, which would require disclosure of industry payments to physicians and to the institution where they work. Why not suggest that there be legislation to require that payments to health organizations & to patient groups too? Might be an amendment to the Sunshine Act, or a separate bill related to requiring disclsoureof charitable donations ( both amount and source), as is done done in the UK.
    For more about the Sunshine Act, see: website of the Prescription Project
    http://www.prescriptionproject.org.

    Best regards to all,

    Joana Ramos
    Cancer Resources & Advocacy
    http://ramoslink.info/
    http://www.bmtbasics.org
    http://www.healthyskepticism.org

  23. Barbra Schick August 5 2009 @ 10:53 pm

    Dear Duncan – Does thinking really hard about what disease you support, include finding out more about what you are writing? Your impressions are far too limited, in the following ways:

    Breast Cancer was not the first disease that was objectified for the purpose of raising research funds. Probably it was the March of Dimes campaign to prevent and treat polio, way back in the 40s. You may remember the subsequent slogan from the seventies, when the last of the US born polio patients came of age: You gave us your dimes, now we want our rights!

    And then, of course, there is Jerry Lewis and Muscular Dystrophy; Easter Seals and neuromotor disorders. The campaign may be about the cure, but there is plenty of family support and information in the mix as well. I know this from 40 years of working with families who actually needed help, and got it, day by day.

    Where breast cancer is concerned, my grandmother died from it, before she was 60, and after she was carved away, bit by bit, with the only cure they tried – serial surgeries.

    Later when my mother was diagnosed with BC, she was treated with state of the art, research based care, and survived ten years, before she died of something else. This happened even though she lived in Podunk Wyoming, where Cancer Specialists go only on vacation. The research and dissemination networks that were built with pink ribbon campaigns certainly did make a difference.

    More important, there are always support groups, online and in town, for most people who have any kind of serious or chronic illness these days. Know what most people complain about? The high cost of treatment, and the things that don’t work. Most so called Disease Organizations have websites, magazines, and other media that focus heavily on patient support and information for better living. You just have to go sit in a circle and talk to regular folks, or spend some time on line to get the benefit.

    So please, don’t slam organizations that do many things to help people who don’t live in urban areas, or talk with medical colleagues every day. Some are misguided to be sure, but there are dozens of stories of gains that have been made by grassroots groups that mobilized energy to get something done. For example:

    Special education was energized by parents who insisted that their damaged children could actually learn; before that it was just a hopeless medical condition.

    Children with Down Syndrome began to live better lives when parents and organizations stopped listening to docs who told parents to just let the kids die, or put them in institutions.

    Autism research has dramatically increased the attention that condition receives.

    The National Association on Mental Illness teachers thousands of family members and people with brain disorders how to live respectable and acceptable lives, despite their need for medication and therapy, and also reviews the “me too” drugs that come out with big price tags, but without moving the research forward.

    If the association you need isn’t doing the job for you, why not lend a hand and start something to meet your needs, and those of others? There is always so much to be done, and the people who do the work, find the best cure of all.

  24. dx August 6 2009 @ 8:58 am

    Barbra – Thanks for your comments. I hope it’s clear in my post that I do think some organizations do good work. My point is not that breast cancer was the first to be objectified, but that several breast cancer charities have been highly successful at commodifying women’s fears, with limited benefits for the people actually suffering the disease. In my experience, the prime vehicle for these organizations tends to be a “walkathon” or similar. Unfortunately, lots of other organizations are copying this model, including those I have the most experience with.

    I hope that all disease organizations will try be as useful as those you point out, but it’s simply not the case for many – and I think the response I have gotten to this post (here and elsewhere) shows just how frustrated patients are with these organizations.

  25. roxane August 10 2010 @ 10:03 am

    my mom has a breast cancer but we dont have money to sent her in hospital for there medications so we need some assistant to help us i hope and please help us please…..

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