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Mar
22

Who decides on disease days and do they make a difference?

I am becoming aware that virtually every day of the year is special. I don’t mean that in some philosophical way but perhaps you have noticed a recent trend? It started for me a few years ago when I started taking note of  World TB day. This falls on Sunday the 24th march 2013. I noticed by chance that there was a “rival” neglected disease day for malaria that happened earlier in the year and got more visibility, so I did what any self respecting Brit would do and write to the FT complaining that they had a supplement to commemorate malaria but nothing for TB. A year later and they posted some articles and the last few years have seen regular updates on TB including this year. Now please do not get the impression that I am tracking this quantitatively, because I don’t have the time. But there is an idea there for a public health academic to perhaps look at the disparity in press coverage between malaria and other neglected diseases. I would be happy to consult or help them submit a grant to see if this kind of study stands a better chance of funding than finding cures. Just a thought, but I am half serious. Is part of the problem for TB that it is not as visible in the press as malaria?

Then move on a few years and a whole year was devoted as international year of chemistry.  Did anyone notice if that had any impact in increasing stature or visibility for the field other than the “coolness” factor. Sure the ACS made a big thing out of it but did it increase jobs or funding for  chemistry?

Fast forward to a few weeks back when I participated in rare disease day at the NIH, but which in fact was a whole array of events in a week. This included days of lobbying and and presentations on science in an effort to raise awareness on the 7000 rare diseases.

So if I am going to take this meandering blog anywhere it is to ask who decides what diseases are so important that they deserve a whole day, while other topics get a whole year or in the case of rare diseases, 7000 diseases get crammed into a day. I am not intending to suggest that TB is more important than malaria or in fact 7000 rare diseases, far from it. But as far as I know this topic has likely not been discussed. Why not give TB and malaria years instead of disease days in honor of the millions that have died. And why not have rare disease year to raise awareness for a sustained period of time, because let’s face it, 7000 diseases spread over 365 days is still pretty good value.

I hope this makes people think about the value and the inequity of such events. I am in favor of all diseases getting more than their 15 minutes of fame if it makes people realize that not all diseases are treated equally and nor are they funded equally. 

 

 

 

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  1. Neglected and rare disease year starts today » Collaborative Chemistry says:

    […] follow on from an earlier blog wondering how days and years could be dedicated to diseases or scientific topics I can announce that […]

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