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 The Harry Johns Interview (Page 2 of 5)

We do not have the same potential in Alzheimer’s yet. We hope to, and we are certainly working on that as well as you know, Gary. But until we do, the voice of the person who has the disease today is one of the most important voices in the entire discussion as far as I am concerned. What we really want to accomplish, for us as an organization, is to learn from them what we can do with them and for them, and with their guidance so we are doing the kinds of things they see as most appropriate and most beneficial.

Gary Barg: I think that is really important for the person with Alzheimer’s to have a voice as long as they possibly can. What is the early stage advisory group doing?

Harry Johns: One of the problems as I see is that lawmakers have not really fully recognized the impact of Alzheimer’s disease. Part of that is because we do not see the person who has it. We all know the devastating effects of this disease, but I am afraid congress and policy makers across the country have not acted in a way that we think is commensurate with the impact of the disease. At the Alzheimer’s Association, we are trying to provide care and support for all of those affected today and, tomorrow before we have the disease eliminated, and ultimately trying to eliminate the disease. We believe it is just absolutely critical that we have all these voices engaged in the discussion.

Gary Barg: I think that is very appropriate. There is a lot of talk now about companies being able to develop new blood tests that can identify who is going to develop Alzheimer’s disease. Does the association have an opinion on these tests, and are you involved in any of these tests?

Harry Johns: Well, we certainly funded some of this kind of research, even including some of the things that are in the news right now. We played a role in some early funding. But our position in terms of the testing at this stage is that we need more medical evidence before we would recommend any kind of specific test, Gary. But we are certainly believers today that even with the detection tools we have got, it is just vitally important that people have the option, and we think should take advantage of the option, to get the disease detected at the earliest stage they possibly can, rather than going through a process without knowing what is happening to them; without being able to plan for their lives, without being able to take advantage of the treatments that are available today, even if they are not yet good enough. They are not as good as we need them to be, but they are better than not being treated. We believe early detection with the tools now available is very important, and we will continue to advance on that front as well. We will continue to look at and fund research that will ultimately get us the kind of testing that would do a better job of this.

Gary Barg: What interesting research do you see on the horizon?

Harry Johns: There is a lot of interesting research on the horizon. I am not a research expert, but the people that I talk to in the research community are pretty generally excited. That ranges from the possibilities for earlier detection tools to ultimately treatments for the disease--things like the Alzheimer’s disease neuroimaging initiative that we helped initiate and have funded, where we are getting information on biomarkers.



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