| Living With Huntington Disease |
| On March 11, 2002, CBC TV National News ran a story entitled Measuring Up,as part of a series they are doing about genetics and related issues. This installment featured Jody Schuyler, a young woman from Ontario who underwent genetic testing and found out that she does have the gene that causes HD. The segment also featured an interview with Dr. Michael Hayden at theUniversity of British Columbia, and one of Canada's highest profile HD researchers.During the course of his interview, Dr. Hayden made two specific statements that some of you have already asked me about, and which others of you should be aware of. With respect to genetic testing, he said: DR. MICHAEL HAYDON: There's going to be a really early age of onset for those people. When you ask those people why they want to know, they want to know because living at risk has been a burden for them. The uncertainty is incapacitating. It's plagued their lives. It's very hard to live at 50 percent risk. And now we can tell with very high degree of certainty as to when Huntington disease will manifest with a very narrow range, a few year's range. And that becomes very helpful for people as they plan their future. With respect to a treatment for HD, he said: HAYDON: Within five years, we think that there will be a new approach to therapy for this illness. This will either be for a known drug which is focused on a particular mechanism that we can understand or there'll be a new drug in clinical trials. I fully expect that many of you will be approached by clients and others with questions on these statements. In many cases, people won't have the details quite right. For reference, the quotes that I've included above are taken directly from TV transcripts and represent precisely what was said on both of these issues. Initial feedback would suggest that Dr. Hayden has expressed his opinion regarding the link between CAG repeat length and age of onset, and that there is some disagreement on this point. Regarding the research point, I am in the process of obtaining further clarification.Please feel free to refer any inquiries from our community to me, unless you feel comfortable fielding these questions yourself. For the moment, untilI have more information, here are the main speaking points: The Society was not aware in advance of the specifics of Dr. Hayden's comments and is currently in the process of getting more information about both these points. The Huntington Society does not have any direct influence over, or responsibility for, the protocols governing the genetic testing process. While genetic testing centres across Canada do release CAG repeat lengths to clients who test positive for the gene, obtaining this information is left up to the client. In a recently published paper, Dr. Hayden asserts that, in fact, CAG repeat length is an accurate indicator for age of onset. At this time, genetic testing centres do not attempt to inform a client about when they could anticipate onset of the disease to begin. There is considerable optimism in the HD research community with respect to finding a viable treatment for HD, whether it is within five years, or ten years. While not all researchers can agree about the timing of when such a breakthrough will happen, they are in agreement that it can and will be achieved. That's basically it. As always, any media inquiries on these issues should be automatically sent to me. As I get more information on both of these points, I will keep you posted. If you have any questions or concerns, just give me a shout. Shawn |
| Press Release from Shawn Mitchell March 14, 2002 |
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