Just to get this out of the way: No, this is not to declare or show that I am doing the ice bucket challenge. This post is rather about some problems that were brought up about or because of it.
This stemmed from a message that a friend of mine posted on Facebook:
Enough with the lie.
Have you ever heard about ALS ? I did not even know it’s existence before it suddendly became a viral social movement by which people are making a donation and throwing a bucket of ice and water over themselves.
What made it so popular ? I think it has more to do with the “challenge” of doing something a bit special rather than really caring for what is the sickness.
Sure, better give your money for a good cause than a bad one, makes us feel good about ourselves.
Here is an article that helped me to understand how more money injected in the research will not help to eradicate the disease.
Sickness and illness are a business people, at least since pharmaceutical industry became more interested by money making than well being.
He then went on to link to the ALS page on Wikipedia and The ALS page of GreenMedInfo.com, the site that had the original link, and then to the lead poisoning page on Wikipedia. He then restated the listed causes from ALS from the original article:
5 potential root causes of ALS : Lead Poisoning, Pesticides, Statin Drugs, Cigarettes smoking, Mono Sodium Glutamate (MSG).
Notice that genetic is also seen as a factor, but want make a comment on the causes that we can work on : notice that on 5 of them, 3 are related to uncounscious food poisonning and the 2 others are linked with bad habits.
Smoking is just damn stupid. Taking medication is a cultural habit in which we’ve been misleaded by thinking pills will always resolve problems.
One has to look for the root of any illness rather than fight symptoms.
I agree with some of his conclusions: stop smoking, ingesting lead and pesticides. Those, I think, can universally be stated as good things. In addition, his point about our culture wanting to just take a pill to solve the problem is spot on. My problem comes not from his thesis, but with how it is formulated, and the information it is based on. To this end, I gave a detailed response to the original article by Sayer Ji:
This article is objectively wrong. It has so many statements that are unjustified or incorrect that the entire article works into a web of wrong information:
His justification being that raising money for diseases whose cause is not known is useless, using breast cancer of all things as an example. Even the article he uses complaining about breast cancer gives figures showing decrease in the number of late stage breast cancer, and decrease in breast cancer mortality, whose causes are already known (http://www.cancer.org/…/detai…/breast-cancer-what-causes)
His paragraph (and link) about not knowing the causes or cures of disease is misleading if not simply wrong. Nobody claims that treatments cure you without the body’s help. Indeed, immunocompromised patients are very difficult to keep healthy due to the lack of their own bodies’ defenses. But if you truly believe his arguments, I encourage you to recommend to people with cancer to eat turmeric and miso soup instead of getting their chemotherapy. Maybe they could publish a double blind study comparing the two. Who knows, we may learn something new!
He then goes on to say that nobody is looking for a root cause to the disease, which a quick search on alsa.org shows to be unjustified (http://www.alsa.org/research/) Indeed, the links at the top of that page are all about research into the genetics of ALS and the root causes. This type of basic research eventually leads to treatments as we know them.
He then goes on to say that they themselves search for cures to diseases on Medline, which is amusing since all the previously mentioned research often goes on to be indexed on Medline so that people like M. Ji can look up information about these diseases. I am not sure where he thinks these articles come from if not from basic research such as that funded by these organizations.
He then finishes by linking to a page with many articles, once again examining risk factors surrounding ALS (the type of articles that are funded by the money he is saying they should not be getting), stating that enough causes are known, and that we should focus on that… so basically, we know enough, let us just be satisfied with what we know.
And in a final twist, he links to a few articles about ALS, which admittedly are interesting, but not fully conclusive. A distinction should be made between ‘risk factor’ and ’cause’. A risk factor means higher amounts of something often appear with this problem. A cause means there is a direct link, like ‘me reading this article causes me to doubt my faith in humanity’. And as we should all be aware, correlation does not imply causation (http://xkcd.com/552/,http://en.wikipedia.org/…/Correlation_does_not_imply…)
All that being said, don’t smoke, don’t eat pesticides, don’t eat lead. The MSG article he links has nothing to do with dietary MSG, and only mentions glutamate in cerebrospinal fluid. The statin links stress that it is an extremely rare condition that only applies for people with a genetic predisposition to it, and that some people might actually get protection from ALS with statins.
Fund raising like this allows researchers to get the funds they need to cure diseases. It is a publicity stunt, but it is for a good cause. Even if only a part of this money goes to further research, it will help people find a new treatment. It will even help holistic medicine believers complain about how people are fools for wasting their money, using research articles to justify it.
His response surprised me, somewhat. As a researcher in academia, I have a fairly intimate viewpoint as to how research funding works, where the money comes from and goes. His response showed me something important: The mistrust of the pharmaceutical industry may extend to all research.
Comme toujours Eric, réponse intelligente car argumentée raisonnablement.
Mais est-ce que la recherche manque de fonds financiers ?
J’eu cru comprendre que l’industrie du médicaments est une des plus productive financièrement…
[translation by Eric:
As always Eric, an intelligent answer because reasonably argued.
But is research lacking funds?
I thought the pharmaceutical industry was one of the more financially productive ones]
Studying in drug development at McGill University for several years and being married to a pharmacist have given me plenty of exposure to the pharmaceutical industry as well as all the suspicion it is viewed under. The mistrust people have is understandable: the processes and inner workings of pharma research and drug production are quite nebulous to most people. For somebody that has not worked in medicinal chemistry, it is very hard to wrap your head around all the work and resources that are needed to produce that little white pill that you simply swallow to cure your ills (or symptoms, as the case may be). I tried to the best of my ability to explain where funding for research normally ends up.
La réponse est un peu plus complexe que la question.
La majorité de la recherche fondamentale, c’est-à-dire biologie, causes génétiques, mutations et ainsi de suite, est faite dans les universités (pas les compagnies). Les universités reçoivent leur argent principalement du gouvernement où ils doivent tous competitionner pour les fonds disponibles. Il y a aussi des organismes qui donnent de l’argent pour des domaines spécifiques (comme SLA) qui sont données aussi par application et compétition. C’est rare (que je sache) que de l’argent aille aux compagnies pour de la recherche fondamentale parce que ce n’est pas leur domaine d’intérêt dû au manque d’intérêt immédiat.
La recherche pour les médicaments ou traitements se fait en milieux industriel et académique. Il y a beaucoup de risque associé à la recherche. Ça veut dire que les compagnies vont focaliser leurs efforts sur les cibles les plus faciles (pas toujours évident) et les plus profitables (plus évident avec des statistiques de population). Même à ça, le taux de succès dans le développement de nouveaux médicaments est assez faible, ce qui veut dire que non seulement ça prend longtemps, mais le résultat n’est pas garanti. Étant vrai pour l’académique autant que pour l’industriel, qu’est-ce qui fait la différence? Eh bien les chercheurs académiques sont des élèves comme moi qui gagnent 14,000$ par année, tandis que les chercheurs industriels gagnent un vrai salaire 45,000+$.
Tout ça pour dire que oui les compagnies ont de l’argent, mais la recherche coûte très chère et prend très longtemps. Aussi ils cherchent seulement des traitements, pas les causes (que les académiques cherchent). De plus, les organismes de charité vont rarement donner l’argent de recherche aux compagnies pharmaceutiques (bien que ça arrive pour les maladies qui affectent très peu de gens).
J’espère que j’ai bien répondu… C’est sur mon téléphone et c’est difficile de voir tout ce que j’ai écrit d’un coup…
The response is a bit more complex than the question.
The majority of basic research, such as biology, genetic causes, mutations, and so on, is done by universities (not industry). The universities receive most of their money from the government, where all research groups compete for the available funds. There are also organizations that will give money for specific topics (such as ALS) that are also given by the same process. It is rare (as far as I know) that money goes to companies for basic research, because it is not their field of interest due to the lack of immediate applications.
Research for the actual drugs or treatments is performed both in industry and academia. Research is a very high risk activity. This means that companies will focus their efforts on targets that are easier (not always easy to judge) or more profitable (easier with market studies). Even then, the success rate in drug development is quite low, which means it takes a long time and the results are not guaranteed. Since this is true for academia as well as industry, what is the difference? Well academic researchers are students like me that get paid 14,000$ per year, while industrial researchers gain a real salary (typically 45,000$+) [as far as I know].
All this to say that yes, companies have money, but research is very expensive and takes a very long time. Also, they typically only look for treatments, not causes (that the universities look for). In addition, charities will rarely give money to pharma companies (although it does happen for diseases that affect very few people). […]
I hoped that this explanation would sufficiently allay the fears concerning the money that goes to research. Alice (Not actual name, friend) then posted a video of Sayer Ji doing the ice bucket challenge, but not before reiterating the content of his article.
Dominic (also friend) then pointed out that Radio-Canada (CBC) had discussed the Ice bucket challenge, mentioning that SLA-Québec gives 40% of it’s money to research and the other 60% to helping ALS-affected people and their families. So most of the donations serve to directly help the people, in addition to the research funds.
Alice then linked to a recent article in Macleans, that I am sure most people interested in the subject have already read, stating that the Ice Bucket Challenge is bad because it takes valuable money away from causes that have more need than ALS. I think Dominic’s response adequately covers most of my opinions on the topic:
Oui Alice, j’ai aussi lu cet article et il amène de très bons points; il est clair que ce n’est pas par réel souci idéologique que les gens donnent (pour ceux qui donnent réellement et ne font pas que se verser un seau d’eau sur la tête), mais parce que c’est “populaire”. C’est une stratégie tout à fait machiavélique (la fin justifie les moyens), et qui donnent aux donneurs une sensation de complaisance, de “service rendu à la société”. D’un point de vue déontologique, c’est donc effectivement “mal”, car l’intention n’est pas là.
D’un point de vue utilitariste, pas si sûr; n’y a-t-il pas plus de gens qui donnent lorsque effectivement c’est sur la base d’un mouvement de masse? Si on s’attend à ce que tout le monde donne sur une base volontaire par pur altruisme, je doute qu’on arrivera aux mêmes résultats. Est-ce que les dons fait à cet organisme sont moins bien investi que de s’acheter un Iphone ou un Ipad?
Pour ce qui est de l’argent, on parle dans l’article de la réalité américaine et non de la réalité canadienne (ou québécoise), et on ne fait pas mention du fait que 60% vient en aide directement aux personnes atteintes, pour leur donner une qualité de vie durant les quelques 5 ans d’espérance de vie qu’ils ont.http://ici.radio-canada.ca/…/2014-2015/archives.asp… (voir audio-fil plus bas)
Enfin, il serait effectivement génial qu’une telle levée de fond soit faite pour des causes beaucoup plus urgentes (comme celles nommées dans l’article). Reste à le faire!
Yes Alice, I have also read this article and it has a few good points. it is clear that [people are not donating for ideological reasons] (for those that are actually donating et are not just dumping cold water on their heads), but are donating because it is the popular thing to do. It is a Machiavellian strategy (the ends justify the means), and gives everyone a pleasant feeling of “services rendered to society”. From a ethics standpoint, it is then indeed “bad”, because the intention is not there.
From a utilitarian point of view, I am not so sure. Are there not more people donating when it is part of a fad? If we wait for everyone to donate on a voluntary basis by pure altruism, I doubt we will arrive at the same result. Are the donations to this charity less well invested than if they were used to purchase an iPhone or an iPad?
In terms of the money, this article discusses the American reality and not the Canadian (or Quebecer) one, and there is no mention of the fact that 60% goes directly to aid those that are subject to this disease, to give them a better quality of life during the 5 or so years they have (See audio at the bottom).
Finally, it would indeed be great if such fund raising were done for more urgent causes (like those written in the article). Things to do!]
I think the rest of the responses speak for themselves, so I will simply post the next two:
Tu as raison Dominic […]. C’est super qu’une bonne partie de l’argent aille à soutenir les gens pour qu’il puisse se concentrer sur leur thérapie.
Maintenant, je ne sais plus comment exprimer à quel point les investissements en recherche sont une arnaque et je ne veux pas vraiment argumenté plus sur la question.
Je parlais justement à une patiente hier qui s’est investie sur le financement de la recherche pour le cancer depuis 25 ans. Je lui ai demandé qu’elles étaient les avancés depuis et elle m’a dit que c’était très décevant. Par contre, le gros point positif c’est le soutien aux familles durant la convalescence du patient. Une autre grosse réussite (c’est au jewish) selon elle, c’est la mise en place de services alternatifs (Acu, masso) au sein de l’hôpital. Un domaine passionnant pour nous
You are right Dominic […]. It is great that a good portion of the money goes to supporting people so that they can concentrate on their treatment.
Now, I do not know how to express how much investments in research are a scam, and I do not really want to argue any more on that question.
I was just talking to a patient yesterday that has financially invested in research on cancer for the past 25 years. I asked her what had been the progress since then, and she told me that it was disappointing. On the other hand, a strong positive point is the support to families during the patient’s convalescence. Another great success (at the Jewish [General Hospital]), according to her, is the implantation of alternative services (acupuncture and massage) in the hospital. A very interesting area for us.
Pour ce qui est de l’article de Macleans, c’est vrai qu’il y a d’autres maladies qui tuent plus de gens. Par contre, l’auteur assume aussi que les gens auraient donné cet argent à la charité indépendemment, et que ce phénomène ne fait qu’enlever l’argent des causes qui en ont plus besoin. Je suis certain qu’une bonne proportion des gens qui ont donné de l’argent pour le SLA n’auraient simplement rien donné. De plus, le seul traitement pour le SLA en ce moment ne fait qu’allonger la vie du patient de quelques mois… combien de traitements sont déjà existants pour les maladies cardiaques, ou les MPOC…? Donc c’est vrai que le SLA a reçu un montant disproportionné d’argent avec cette campagne de financement, mais est-ce que c’est vraiment un problème?
Ensuite, deux points:
1) les gens ont tendance à parler de traitements du cancer comme si c’était une maladie, comme une pneumonie par exemple, mais en réalité le cancer est plusieurs dizaines, sinon centaines de différents problèmes. Donc dire qu’il n’y a pas de traitement pour le cancer est comme dire qu’il n’y a pas de traitement pour les bactéries.
2) C’est absolument faux que la recherche sur le cancer n’a pas avancé dans les 25 dernières années (ou que c’est décevant). Dans les 25 dernières années 2,128,370 articles (ref Pubmed) ont été publiés au sujet du cancer. Chacun de ces article est le produit de plusieurs mois de travail par plusieurs chercheurs pour donner tout ce qu’on sait aujourd’hui. Je vous invite à consulter (http://www.cancerprogress.net/…/major-milestones…) pour des avances importantes concernant le cancer dans les 25 dernières années.
Juste pour être clair, je suis d’accord que la majorité des gens pourraient faire autre chose que simplement attendre le traitement magique qui va les guérir. La recherche (hehe) a déjà démontré qu’une combinaison d’anticancéreux et de méthodes non-pharmacologiques (comme l’exercice, ou le jeûne, probablement d’autres aussi) est de loin plus efficaces que les traitements tous seuls.
Alice, tu ne voulais plus vraiment argumenter… mais j’aime argumenter! C’est avec l’argumentation et la discussion que nous apprenons et qu’on croissons.
For the article in Macleans, it is true that there are other diseases that kill more people. However, the author assumes that people would have donated that money to charity anyway, and that this phenomenon only takes away money from causes with greater need. I am certain that a significant proportion of the people that did donate for ALS would simply have not given anything. In addition, the only treatment for ALS available now will only extend the life of the patient by a few months. How many treatments already exist for cardiac disease, or COPD? So while it is true that ALS received a disproportionate amount of money with this campaign, is that really a problem?
Two more points:
1) People have a tendency to talk about cancer treatments as if they were a single disease, like pneumonia, but in reality cancer is many tens, if not hundreds of different problems. Thus, to say that there is no treatment for cancer is like saying there is no treatment for bacterial infections.
2) It is completely false that cancer research has not advanced in the last 25 years […] In the last 25 years, 2,128,370 articles (ref. Pubmed) have been published about cancer. Each of these articles is the product of multiple months of work by many researchers, all so that we know everything we do today. I invite you to look here for the milestones in cancer treatment for the last 25 years.
Just to be clear, I agree that most people could be more proactive rather than simply waiting for the magical treatment that will heal them. Research (heh) has shown that combining anti-cancer drugs with non-pharmacological methods (such as exercise, fasting, and probably others) can be far more effective than the treatment alone.
Alice, you did not want to argue anymore… but I like arguing! It is by arguing and discussing that we learn and grow!
So in the end, I am not sure I was able to convince Alice that research is indeed worthwhile, and not a massive conspiracy to scam people out of their money. It remains that we should all try to reach a happy medium between only using pharmacological treatments, and only using non-pharmacological treatment, because in the end that will lead to the best outcomes.
This discussion might continue, and there was another point I wanted to address, but that will go to another later post.
What do you think, is research a giant waste of money? Have we given enough money to ALS, should we move on to a new cause? Let me know what you think in the comments below.
Exercise and Cancer:
There are too many to list, but here are a few
Exercise interventions on health-related quality of life for people with cancer during active treatment
Fasting and Cancer: