ALS: THE INTERVIEW PRESENTS RICH MACKNEY! (PART 2 OF 3)

These photos remind me of the indomitable spirit of Friendship. Last month, 22 of us showed up at the Walk to Defeat ALS and we pushed Rich in his wheelchair 3 miles around Tempe, Arizona Town Lake.
In this photo, captured a couple of weeks earlier at Rich's fundraiser there were over 200 people! There was also a live rock band, dancing and celebration. There are many members of "The Mackney Warriors". I joined Bill and Wolfgang pictured here with Rich!

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In this installment, I asked Rich to cover an excellent point he made with me during one of our conversations several weeks earlier. I felt it was a powerful point to be made and Rich agreed to recap for me some fascinating insights into Stem Cell Research. Let's pick up our conversation...

Manning: One of the things we talked about before that was a great point that you made was that all too often when we're talking about Cancer research, we focus on Cancer. With Parkinson's, we focus on Parkinson's and so forth. But if we were able to get representatives from every different disease that could potentially benefit from stem cell research, that might accelerate progress. Am I understanding that correctly?

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Mackney: I think you're exactly right, Michael. In fact, my understanding of this technology is that once we begin to unlock the secret of how you instruct a stem cell to do a certain job, then creating a data base of instructions that cover a whole host of different problems, sicknesses and diseases will come very, very quickly. The problem we have today in the U.S. is that the FDA mandates a multi-year process of clinical trials that starts in a petri dish in a lab and that moves on to mice and rats, and that moves on to a small handful of people and then moves on to a slightly larger larger group of people. Then 5, 7, 10 years after you started, the FDA will say, 'Now you can use this therapy on the masses'. I'm saying, we have to break the stranglehold that the FDA and big Phama have on slowing down the pace of stem cell research proper and create a mechanism in this country to allow terminally ill people to stand up and sign a waiver saying, 'We understand there are no guarantees. But we are living in a very shortened time line. We're seeing so far, that this type of stem cell therapy doesn't seem to hurt you, so we're willing to take the risk that this might just slow down the progression of the disease. So, I'm willing to accept the risks, why won't you let me try?'

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Manning: Sure.

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Mackney: And that speaks to, unfortunately, the nature of this country to sue anybody for anything all the time because there's money to be made. We need to figure out how to stop that because it's standing in the way of helping people stay alive to live.

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Manning: The plan that you and I talked about this past summer was one that I felt was very straight forward and well planned out--it was 'Let's try and slow it (ALS) down this year, stop it next year and reverse it the following year'. Is that still your plan?

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Mackney: That is absolutely my plan! Based on what I just told you, I do feel that I will have to continue to look outside of this country this year to slow down the progression of my disease and look outside of the country next to stop the progression of the disease, and I'm hoping that the year after, that we have found a way to open the eyes of our legislators and control agencies in this country so that we can be applying what will be proven methods of stopping and reversing this disease.

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Manning: One of the things that struck me about the point that you made in an earlier conversation we had was that if you were testifying tomorrow morning to Congress, and you asked the question: 'Would everyone in this room raise your hand if you have anyone in your family or a loved one who has a disease or an illness?' There would be a large show of hands!

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Mackney: Most assuredly!

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Manning: So, the question then becomes 'Why would you stand in the way of keeping this technology even one day from your loved ones?' And that's really what confounds me. It's a really frustrating process. Perhaps it's politics, perhaps it's...a number of things. But it's a very frustrating bottle neck.

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Mackney: I think if you look at health care in this country today, you find that the priority is not based on curing you of your illness. The priority is on treating your symptoms. I understand that in the case of big Pharma, it would be highly desirable to treat your symptoms and keep them in check for your entire life, because that means a big tremendous windfall for them. And I don't see them trying to find a cure tomorrow, because their money stream would come to an end. When you look at how tightly related big Pharma is to representatives and to the FDA directly, I think we have a system that has existed for many decades that cannot easily be undone. So, I think we need to be able to understand that possibly it is going to take being there in the stem cell arena that is developed in the near term outside this country, and then have people like me who one day soon can show up in Washington with my own representative and say, 'Look at me. I've stopped my disease. Look at me. I've reversed my disease. Look at me. This is what I did. This is the Science that helped me. I'm one of thousands of data points that exist today. How can we fast-track this tomorrow through the FDA and bring this therapy to the millions of Americans who can take advantage of this now?'

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Manning: We've seen an example of this, I think, in the U/S. Army where there was some research that found from the depths of the sea, some micro-organisms that you told me about where if someone suffered a gash--for example--and they were bleeding, they could put this paste of micro-organisms directly onto the wound and stop the bleeding. And I understand that when the Army heard about this and saw the potential for saving lives on the battlefield, it was fast-tracked through without any of these problems with the FDA. If only we could do this now!

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Mackney: I think that's a good example, Michael. What it says is that if you have a very promising technology and you also have a customer who has a tremendous amount of clout of with our own government who sees we can manage this from the technology, that you'd have a fantastic one-two punch to take this and ramrod a very positive therapy through the system in a fast pace. Personally, I feel stem cell therapy is ten-times more beneficial than this (current medical) therapy, which is very good in its own right. So, we just have to find someone we can show this to who has a lot of clout with our government to go to Washington and say, 'We need this now'.

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Coming Up Next: The Conclusion of Our Visit and more...

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