From an article on Forbes about some objecting to the ALS ice bucket challenge, with my response to Dr. Ezekiel below The Ice Bucket Challenge Is Raising Enough Money To Matter The most galling bit of shade being tossed at the ice bucket challenge is that for all the noise it’s generating, it’s useless. This comes from Ezekiel Emanuel, chairman of Medical Ethics & Health Policy at the University of Pennsylvania, on Bloomberg TV. And honestly, Zeke should know better. He said: Right. I don’t want to pour ice on this whole thing, but one needs to put this all in context. As an example, social media and viral marketing this is amazing. As an example of transforming biomedical research and Lou Gehrig’s disease one needs to be a bit more hesitant and skeptical. I have some very dear, dear, dear friends who a spouse and father died of ALS. So and it is a horrible way to die and it is a disease in great need of interventions that work. So but there’s a long road to go. And $13 million is very unlikely to be transformative. We need to put this in a much larger context, the National Institutes of Health, which funds a lot of basic research in this country, over $30 billion per year. So $13 million is 0.05 percent of that kind of investment. This is very unlikely to be transformative. Dr. Ezekiel, who has the ear of the President (having helped design the convoluted complexity known as Obamacare) and of his brother, former Chief of Staff to the President and now Mayor of Chicago, could actually contribute more than any such challenge by challenging how the NIH allocates that $30 billion dollars to various diseases, SO THAT some diseases like ALS arent grossly underfunded and others grossly overfunded, relative to the total budget and the comparative needs. ALS funding through the NIH has been slashed 32% as part of the overall NIH budget cuts of the past several years. Even given this travesty, no one wants to talk about how those NIH funds are allocated, because this is largely a political process rather than based on objective criteria like need. The whole process has been skewed by the very successful efforts of powerful disease lobbying groups (certainly not ALS) which have been able to get Congress to intervene in the process and stipulate funding for certain diseases, while not others. Obviously, Congress does not make such interventions based on their knowledge and careful deliberation of research needs (both in relative and absolute terms). The NIH itself also participates in this charade. NIH directors, including the current one, dodge questions about how NIH funding decisions are made with nebulous and misleading comments. So Dr. Ezekiel, rather than criticize this amazing phenomenon that is bringing more attention and significant PRIVATE funding for this long-neglected, hideous disease (no treatment, 100% fatal, agonizing death), why not use your connections and push your medical and political pals to create a funding process that will result in more than the paltry .05 percent of the total NIH budget the ice challenge has raised? Yes, increase that research pie, but also revisit (which rarely if ever happens) how it is divided up. Such a depoliticized approach would almost certainly result in an increase in federal ALS dollars greater than what the amazing ice bucket challenge has raised so far. Take the cold plunge and get to work, rather than just criticizing something that has probably raised more awareness of this most horrible of diseases than all previous publicity efforts of the past 75 years, since Lou Gehrig was struck down with the disease that now bears his name, has been able to do. How on earth can that be a bad thing?!
Posted on: Tue, 19 Aug 2014 23:52:16 +0000
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