Wednesday, January 11, 2006

Clarification of Comments on the Lung Cancer Alliance's Strategies

I feel bad because it appears that there has been some misunderstanding of my comments (post 1 post 2) of the Lung Cancer Alliance's actions and overall strategies (and I apologize if that misunderstanding is due to my failure to express my argument clearly enough), but I want to take this time to clarify my argument.

First, I should make clear that what I am critical of is a very specific action that the Lung Cancer Alliance took. I am supportive of the overall goals of the Alliance and many basic aspects of their overall strategy, including:
  • the need to obtain more resources for lung cancer research;
  • the need to achieve more of a focus on effective treatments for lung cancer, not only prevention;
  • the need to educate the public and policy makers that a substantial number of lung cancer patients are nonsmokers;
  • the need to educate the public and policy makers that a substantial number of lung cancer patients are former smokers;
  • the need to somehow overcome the stigma that is attached to lung cancer because it tends to affect smokers in order to achieve more funding for lung cancer research, including treatment and hopefully a cure.
I therefore think there is tremendous value in what the Lung Cancer Alliance is doing. The public and policy makers need to realize that lung cancer affects not only smokers, that many of its victims are people who don't smoke but formerly did, and that a substantial number of lung cancer victims are people who never smoked at all.

And in fact, this aligns with much of the focus of my own career, which has been largely dedicated to trying to address the problem of lung cancer among nonsmokers.

There are really only 2 things that I take issue with:

1. First, I wrote my initial post on this topic because I felt it was out of line (and not consistent with the above goals) for the Lung Cancer Alliance to criticize California's Governor for issuing a proclamation on lung cancer awareness because it mentioned smoking as well as the need to prevent smoking. I just think that's not appropriate.

I think the Lung Cancer Alliance was perfectly entitled to seek a proclamation of its own liking and perhaps one that stressed the disease rather than smoking, but once a proclamation was issued, I don't think it was in the best interests of the public's health (or lung cancer advocacy) to be critical of the fact that smoking was prominently featured in a message about lung cancer. I don't see how a responsible public health practitioner or government body could take any formal action about lung cancer without mentioning smoking or the need to prevent smoking.

2. Second, I am concerned about the approach of trying to promote increased funding for lung cancer by emphasizing that it affects nonsmokers because I think it tends to degrade the value of smokers' lives and to increase, rather than decrease the stigma associated with the disease. If the fact that nonsmokers get lung cancer is relevant to the appropriate funding for the disease, then that implies that smokers are less deserving of research dollars into a cure for their ailments, and I don't see how that is a message that is going to lead us in the right direction. If anything, I question whether highlighting the stigma associated with lung cancer is actually going to remind people of it, and reinforce it, rather than decrease it.

It's kind of like sending out a message to the public that we need to fund mental health treatment more because not everyone who gets depression and other mental illness is "crazy." Sure, that could be an effective way of obtaining increased funding, but what it does is reinforce the idea that mental illness is something that means a person is "crazy." Rather than advocating for mental health funding on the grounds that there are a substantial proportion of people who get mental illness who are not "crazy," I think it makes more sense to try to address the overall stigma attached to mental illness itself. Mental illness does not mean one is crazy, it means one is ill. That's the message. Not that most mental illness victims are indeed crazy, but because there are some who are not, we should allocate more money.

It seems to me that what the Lung Cancer Alliance may be doing, albeit unintentionally, is suggesting to policy makers that while most lung cancer patients are indeed smokers, there are many who are not, and therefore we should allocate more money to lung cancer research.

I am not saying that smokers are being undervalued by saying that this disease affects nonsmokers. I think they are being undervalued by suggesting that because this disease affects nonsmokers, it is worthy of more research funding.

I think it is worthy of funding because it affects PEOPLE. To me, it doesn't matter at all who those people are. So I don't understand the rationale of advocating for funding for lung cancer based on the nature of the victims. I don't see why it should matter whether they are smokers, nonsmokers, or any other aspect of who they are. They are people, and that's all I think should matter.

Let me go back to one of the comments that was made in response to my earlier post: "The relentless insistence of most tobacco control advocates that smoking be at the forefront of any mention of lung cancer becomes an insurmountable barrier to extinguishing the stigma. Lung Cancer Alliance has never disavowed the link between smoking and lung cancer and supports tobacco control efforts. I believe that the public is capable of understanding all the factors of lung cancer (including that only two out of ten smokers get lung cancer, but are far more likely to have a huge number of other diseases), and intelligent enough to not subsequently assume that smoking does not put their health at great risk.

There has been an overwhelming resistance to fund research for the disease itself because (and I quote from a discussion with an American Cancer Society spokesperson) 'we have to put the money where we get the most bang for our bucks - and that is in tobacco prevention and cessation.' Money spent on tobacco control is often counted as money 'spent for lung cancer.' This 'proper way' of dealing with the lung cancer epidemic has been the strategy for 30 years."

It just seems to me that this is suggesting not merely that we should be promoting increased funding for lung cancer treatment, but that we should actually be de-emphasizing the link between smoking and lung cancer and de-emphasizing long-standing tobacco control efforts, which have focused on educating the public about the lung cancer risk associated with smoking and funded efforts to prevent smoking. I just don't see how one can be critical of "tobacco prevention and cessation" and be critical of the fact that money spent on tobacco control is indeed money being "spent for lung cancer," when the undeniable fact is that smoking is the predominant cause of lung cancer. And emphasizing that only two out of ten smokers get lung cancer sounds to me like de-emphasizing the risk. I just can't see de-emphasizing health risks of smoking as an appropriate public health strategy.

So perhaps what I'm trying to say is that I completely respect, support, and agree with the overall mission and goals of the Lung Cancer Alliance, and with the group's efforts to try to educate people about the fact that lung cancer is not just a disease that affects smokers, that more money is needed for lung cancer treatment, and that prevention is not the only approach that needs to be taken. Lung cancer victims do not benefit from lung cancer prevention - what they need is treatment. And there is no question that we have been dismal in our efforts to provide more effective treatments for this devastating disease. And that is shameful and we need to do something about it, and the Lung Cancer Alliance has admirably stepped up and is taking the lead on this critical issue, and that is a great service to lung cancer patients and their families.

But I think it is possible to do that and accomplish that mission without undermining existing tobacco control efforts and programs that physicians, public health groups, government agencies, and tobacco control organizations have been implementing for the past 40 years - programs that have saved literally thousands upon thousands of lives specifically because of the widespread awareness that smoking is the predominant cause of lung cancer.

I think it would be a shame to, in any way, undo what we have accomplished, to decrease funding for smoking prevention in order to increase it for lung cancer treatment, to run the risk of further degrading the value of smokers, or to increase the stigma associated with the disease.

I don't see why we can't accomplish both objectives at the same time - prevent the disease (largely by emphasizing and addressing the fact that smoking is the predominant cause of lung cancer and is the priority for efforts to confront this epidemic) and treat the disease (by advocating for more research dollars to lung cancer treatment, which is not at all addressed simply by prevention efforts).

Finally, I want to thank the folks associated with the Lung Cancer Alliance for their patience with me and their willingness to take part in a discussion of these issues. If I seem overly critical, it is probably that I have devoted much of my career to the effort to educate people about smoking and lung cancer and to have a group criticize a statement on lung cancer for mentioning smoking is just something that I perceive as a threat to much of what I have worked to achieve.

I want to emphasize that this patience and willingness to discuss these issues is greatly appreciated, and frankly, it is something I have not experienced much in my recent blog postings, as most of the anti-smoking organizations that I have been critical of are not even interested in entering into a discussion of the issues. I think talking and being willing to discuss the issues can only lead to better education of everyone on both sides of the issues, to clarification of arguments on either side, to getting everyone to think more critically, and ultimately, to better policy, better advocacy, and better service to the people we are all trying to serve.

The Lung Cancer Alliance has shown itself to be an organization with great integrity, willing to enter into a public discussion on its strategies even in the face of criticism. That is something few (if any) anti-smoking organizations have been willing to do.

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