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Re: IMPORTANT BRCA1 TESTING UPDATE!!!From: Bert Gold (bgold@itsa.ucsf.EDU)Thu Apr 11 15:02:38 1996
On Thu, 11 Apr 1996 MNudel@aol.com wrote:
> Bert, Mitch, Here is the issue for me, although it may be a bit personal and idiosyncratic: First, my a personal digression: There is much breast and ovarian cancer in both my and my wife's ashkenazic jewish families. This has resulted in many mastectomies and oophorectomies and at least one death (My wife's aunt). There have so far been no prophylactic surgeries among those in mine or my wifes' kindreds. My thinking is that there might be honorable alternative approaches toward coping with a predisposition toward breast cancer other than high level surveillance OR prophylactic surgery: That it might be possible through use of breast cancer support groups such as those which have been organized at Stanford and featured on Bill Moyer's PBS program and book 'Healing and the Mind', to improve survival and intervention strategies. In one study, conducted at Stanford, breast cancer patients doubled their survival times by being enrolled in supportive group therapy. Now, I don't know the psychoneuroimmunological mechanism for this (and I don't think anyone else does) but it appears to be true! The problem is that although I have broached this topic to many in the know at NIH, they are unwilling (at least as of this date) to make an initiative in this area (as in so many others, these days, as research funding generally is in a crashing tailspin). Ambivalence toward funding is especially true in this area, because of the controversial nature and uncertain outcome of such psychosocial research. So, who will pay for such counseling? Even if we can agree that some significant counseling intervention is required in order simply to aide those contemplating the $295 expenditure to take the test at the Genetics & IVF Institute, will 3rd party reimbursement provide resources adequate to the counseling task at hand? I could be wrong, but I think not. Also, I am concerned that requesting such resources from third party payers entitles them to know the outcome of the tests. Genetic tests, especially those with informative possibilities for those with predispositions to cancer, ARE different than other medical tests in that they can be used to determine future insurability, not only of that individual, but perhaps of that entire family. This concerns me, too. Francis Collins has asked the Senate to adopt legislation on this issue, which would prohibit insurance companies from including genetic considerations when they decide whom to cover and what premiums to charge. I agree with Francis about this... Unfortunately, Nancy Kassebaum (R-Kansas) has prevented this bill from succeeding to date. I am concerned about this, too. So, I guess my long winded answer to your question is that I am VERY enthusiastic about the possiblity of saving lives (or at least staving off death) as a consequence of the BRCA1 test; but at the same time, I feel awful about the road our nation has taken toward its future, and I think knowing a great deal about each of our genes and not being able to do anything about that knowledge (for want of resources), is a great sin.
-- Bert Gold, Ph.D. "If only we stay with that principle University of California, San Francisco which counsels us always to hold School of Medicine to the difficult, then that which Department of Pediatrics now seems to us most foreign, will Program in Medical Genetics become what we most trust and (415) 476-2850 find most faithful." - R.M. Rilke
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