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Hey Martha, Every time I do research into funding of chronic diseases in this country I'm very disappointed in our priorities. People on the list are probably tired of hearing me talking about this country's misplaced priorities. But the facts are very clear on this matter. Quite simply AIDS receives far more than they need in federal funding for disease research. I said period! AIDS is still a daunting problem for this country. I'm not one of those people who says that lifestyle has a huge impact on whether you acquire the disease or not. There simply is one reason we don't receive as much funding. In a word it is Organization. In the 1980s when the AIDS virus took the country by surprise, the largest group affected were gay men. Although the numbers breakdown has changed fairly significantly, this still is true today. The gay community had already organized for fear that homophobia was beginning to endanger any chance of not being ridiculed, harassed and assaulted. With activists already in place organization became much easier and therefore provided a greater ability to be heard and seen. Multiple sclerosis is a disease that strikes a younger population that often sees long periods of remission and therefore is far less debilitating over longer periods of time. Again this makes them far more mobile, more energetic and also tied to younger population as a support system. Although there are far fewer at half million people afflicted with what can be a terribly frustrating and sometimes deadly disease, Multiple Sclerosis has demographic superiority with less than half the people affected. As far as Alzheimer's goes, I don't have a clue except for they have approximately four million people affected. Other than that, they share many of the impediments previously mentioned. What's worse is that they are not able to draw from all their faculties. They certainly have more physical mobility in most cases. You are right in that we need a far more aggressive approach. It seems that is all Congress responds to. What else do we have for evidence? Funding levels only speaking as loud as the voice asking for them. This is a sad but true story. I think the signs are pointing to a much more aggressive approach by the people of list. But, we do need to make more noise. I can hear the noise getting louder every night when I open my window and shout, "I'm mad as hell, and I'm not going to take anymore!" Regards, Greg Leeman 37/7 (Martha Rohrer) wrote: > In a letter to the editor of our local newspaper on May 16, a reader > reported the following information obtained from Congressman George > Radanovich in response to a query: > > Federal money spent funding the following: > > Heart Disease: 737,563 deaths .. 31 percent of total deaths ...$851,581 > > Cancer: 538,455 deaths .. 23.3 percent of total deaths .... $21,711,809 > > AIDS: 43,115 deaths .... 1.4 percent of total deaths ... $5,598,000 > > The writer noted the disparities and cited examples of the attention- > getting devices used by AIDS activists, and ended saying, "We need to > communicate to our representative that we want action on those diseases > affecting us." > > After reading that, two points came to mind: If allocations are based on > death statistics, we stand a weaker chance of appearing numerous enough to > be considered very seriously, since the immediate cause of demise is > likely to be something else, like pneumonia or an associated disease. > > Also, I noticed was that it is those three diseases that tend to come to > the public's mind immediately. MS and Alzheimers do too. PD has gotten > media coverage with reports on palladotomies and other brain procedures, > but the public seems to have gotten the impression that these are cures. > We need to get loud and aggressive and informative to get our fair piece > of the money pie that pays for research. When business wants to improve > sales and their image, they hire a public relations firm with a good > track record whose job is to place their client's name and product in the > public's face wherever they go. Awareness and image is the way it is done. > Our group here on the PD list are doing that very well, but there are a lot > of people with PD who are hidden from the world and are trying to cope with > meager informational resources. Perhaps we need to seek out those > compatriots and get them involved too. There are a lot more of us out there > than our congresspeople are aware of. > > Now where is my pen and paper .... Dear Congressman, Its me again..... > > Martha Rohrer > [log in to unmask]