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CNN Live Event/Special

Michael J. Fox Testifying Before Congress in Fight Against Parkinson's

Aired May 22, 2002 - 10:41   ET


CAROL COSTELLO, CNN ANCHOR: We want to head back over to Capitol Hill, because Michael J. Fox is now testifying before Congress in the fight against Parkinson's.

Let's listen in.


MICHAEL J. FOX,ACTOR: ... development of a cell line specifically for the study and treatment of Parkinson's.

Last fall, we launched a $2.2 million initiative to develop cell lines with characteristic deemed relevant to Parkinson's. As with our other programs, the scientific response was overwhelming. We received applications from a veritable who's who of cellular biologist worldwide.

The number and the quality of the proposals compelled us to double the program's budget to 4.4 million, which made it possible for us to support portfolio projects, exploring all the promise and techniques for creating cell lines for adult, fetal and embryonic cells.

The number and diversity of these programs will allow for a meaningful comparison of these exciting technologies. In our request for applications, we made it clear that we valued results over technique or cell source. Our program is to develop an effective tool to stem and treat Parkinson's, not to support new technologies for their own sake, or to pick favorites among emerging therapies.

As any patient will tell you, their favorite therapy is the one that works. This is an obvious and logical approach if your goal to cure a disease, but often the political debate can lead to arbitrary decisions, or otherwise obscure the fact that the goal of the research is to treat, heal and cure.

I want to commend you, Senator Harken and Specter, along with Senators Feinstein, Hatch and all your other bipartisan colleagues, for supporting the human cloning prohibition act of 2002, which strikes the necessary balance between development of potentially life- saving research and inappropriate applications of this powerful technology. It's important to make clear that the debate is not about promoting one type of research over others; it's about protecting researchers from being demonized or criminalized so they can go about their work exploring new opportunities to treat illness and disease.

Development of such promising new therapies puts us on the threshold of a new era in medicine. Today, neurologists may be able to do little more than tell you the name of the disease that's taking away your life. Or in some cases, he or she may be able to give you a prescription or two to ease the symptoms for a few years. It's not a great proposition.

But their is a paradigm shift under way. Understanding of the brain in neurological disorders is advancing at a staggering pace. Moving from definition of the disease to treatment to the possibility of repairing the brain and restoring lost function. The time has come where the brain no longer just a place for research. It is a place for cures. The NIH recognizes this shift and has taken some steps to respond.

Unfortunately, vacant leadership positions have rear ended the bold action we need. Our foundation has succeeded thus far, mostly by tapping into the enormous backlog of promising yet underfunded and unfunded science.

We didn't create this opportunity. We're simply responding to it with whatever resources we can muster. As exciting and gratifying as it is, seeing the possibility only increases our impatience and sense of frustration over what is not getting done. NIH has the resources and the infrastructure to do much more.

To meet the opportunity, I encourage the new NIH director to immediately fill the open NINDS director position and to do so with someone committed to using all available tool, including the director of discretionary budget authority. I believe the NIH should responsibly pursue all available regenerative therapies for Parkinson's and other diseases, and adopt an aggressive, proactive Bunsen burner approach to creating cures, not just research.

I'll shorten my comments. In describing our efforts, we often make analogies to great achievements like the moonshine. But I'm here to tell you that administering a successful research program is not rocket science; it's mostly common sense and the will to get things done, and we're going to get this done. This subcommittee, this Congress and the NIH have the opportunity to make it happen in times for where more people today living with Parkinson's.

Thank you.


LIN: You just heard Michael J. Fox testifying before a Senate subcommittee, really touching to see, because he is shaking so much more nowadays. It seems like he is so much more. Members of the Senate obviously touched by his testimony today. We wanted Dr. Sanjay Gupta to stick around to tell us... LEON HARRIS, CNN ANCHOR: He was trying to sneak out of here. But we're glad you happened to be here right before we kind of went to go to coverage. How familiar are you with this case, because it occurs to me, as we sat here and watched, we saw Muhammad Ali, whose symptoms were totally different than those we saw here from Michael J. Fox.

DR. SANJAY GUPTA, CNN MEDICAL CORRESPONDENT: You're seeing sort of an interesting think within Parkinson's Disease. Michael J. Fox has had an operation. Muhammad Ali, as you know, sort of characterized by a few different things. He's very stiff. He's very rigid. He was Slowness of movement, and he has tremor, but it's a very different sort of tremor than Michael J. Fox's. All these tremors, it's almost like he's so stiff, that he has tremor because of his stiffness, whereas Michael J. Fox has actually had an operation called the paladotomy, which actually loosened him up.

HARRIS: What is that?

GUPTA: Basically, what a paladotomy is, you think about the brain sort of being in balance, part of the brain keeping you stiff and part of the brain keeping you loose. Before the operation, he was on the too stiff side, and he was given an operation to make him actually looser, and as you can see now by looking at him, much looser than normal even, lots of sort of writhing movements that correspond to that.

COSTELLO: Will this fix itself? Will there be some happy medium?

GUPTA: Probably not, unfortunately, for him, and these operations really are not a cure for Parkinson's Disease. They really are designed to treat the symptoms. As we see in the case of Fox, he's actually become looser than he would have wanted to probably, or that a normal person would be.

HARRIS: Which case would have more wear and tear on the body. It would seem to me that you would actually have a bit of a trade-off there between being so tensed up and being so loose that you might actually be wearing yourself out more than the other.

GUPTA: Neither one of the options is good options. Certainly the Parkinson's Disease, both of them still have the disease. The disease itself is associated with all sorts of different problems, including wear and tear on the body, wear and tear on all the organs of the body. I'm not sure. There are medications that Fox is probably taking now to try and ironically decrease the looseness, sort of take medications to reverse what he was trying to have before.

COSTELLO: He's so young. He's in his early-40s, if that.

HARRIS: Real quickly, speech, is he going to be losing any control over his speech, as we see in Muhammad Ali.

GUPTA: He very well might, as, again, the disease not being cured. He might start to get this sort of stilted speech, halting speech that develops over time. And with time, he may not be able to really speak clearly at all.

HARRIS: Interesting. There is time to work on a cure.