Posted by Alan F. Bachrach, M.D. on June 08, 1999 at 00:50:46:
In Reply to: Re: JDF I Still Want Answers posted by Mary E. on June 07, 1999 at 21:48:32:
Dear Mary E.,
My family has been fighting this disease for only three years (June is our "aniversary month"). So my perspective may be somewhat limited.
As best I can tell, JDF has become much more focussed in the past 2 years. Many on this forum were very critical of JDF prior to that (particularly Al Gordon), but as we have seen specific improvements (such as the Harvard Center) we have become more supportive.
As a physician I can tell you that there are many diseases for which no fundamental changes in survival have occured for many years. By and large this is true for many cancers (eg; colon cancer, breast cancer, pancreatic cancer, malignant brain tumors, etc.) and for many of the diseases I see as a neurologist. For example, the benefits of the new treatments for Alzheimer's and ALS are relatively marginal in my opinion and they cost a fortune. We have better treatments for Parkinson's symptoms, but fundamentally we probably are not changing the course of the disease to any great extent. Immunologic treatments for M.S. which can be terribly debilitating may slow the rate of disease progression, but the benefit that might be obtained for a specific patient is very difficult to predict. Jillions of dollars have been raised to research a cure for various forms of muscular dystrophy and as far as I know, steroids for Duchene Dystrophy is about all we have come up with (other than supportive therapies such as bracing, pulmonary hygiene, etc.).
So, the failure of JDF to achieve its' goal of a cure by the end of the decade should be viewed with some perspective. I believe that the money is being better allocated at this point than it was a few years ago, but even had it been more effectively allocated in the past I am not sure a cure would have ensued by this time. Understanding of immunology is accelerating, but to some extent science moves at its own pace and serendipity, genius and persperation all have to occur for advances to be made.
I would be interested to hear some specific charges, but I do not find their failure to achieve the goal of a cure to be a reason for anger or abandonment.
Alan