Tom,
OK, the AMA probably does destroy competition. But...
how do we combat this? They are probably not the place to
start. Don't you think the insurance co's. who pay the
bills and ultimately make the decisions is the place to
start? That's what we think, go to the source and you may
find the solution. If it is needed, we can go to the
political arena.

Jim,
Your statement of "those of us in the US are dealing
exclusively with surgeons" is so relevant to our discussions
on this forum. Maybe the field of rheumatology (sic?) is
the answer. I don't know, but there definitely needs to be
a primary care physician for DD that is not a surgeon, be-
cause honestly (and fairly) surgeons perform surgery. A
doctor who is knowledgeable about the disease needs to be
the first reference. If that Doctor then refers to a sur-
geon, fine. That surgeon should still be able to offer
surgical/procedural options. However, some with the disease
may never make it to the surgeon.

Tom,
Thanks, we've also followed your postings. You have
obviously been an active participant on the forum for some
time and seem to think along the same lines. Will email
you about the avenues we are pursuing. We firmly believe
the insurance route is the way to proceed. As far as DD
Sufferers not having the clout, who knows? There seem to
be more people we either come into contact with or hear
about with this disease that would ever have believed. My
(Mary Beth's) older brother has just developed it. That
brings our immediate family total to 4. (In two different
family trees now.)

Tom,
Is he addressing us?
Mary Beth

In my view, this is what is working against us: When a patient presents with DC, any well trained physician will automatically refer to a surgeon because that's the ONLY option they know of. And unfortunately for those of us with a more aggressive form of the disease, many have one surgery later in life and NEVER NEED MORE CARE!
If multiple surgeries were the norm for the vast majority of sufferers, alternatives would be seen as more necessary. As it is, however, about 50% of us get cut, recover, and never look back. I am not endorsing surgery, just looking at some of the facts surrounding the status quo.

On the bright side, a viable and effective alternative IS being tested and pursued by The Establishment in North America. Should it be successful it may well open the door to other alternatives (like NA) once the surgical strangle hold is finally broken. I realize if I keep bring this up around here I'll eventually be labeled a possible shill for BioSpecifics, but it's surprising to me how little their work is mentioned on the very web site they are paying to keep on the air. Some of the eloquently stated reservations about collagenase injections sound a lot like Sean when he's putting down about NA! Let's have a little American can-do optimism. (Maybe I just haven't had this disease long enough to be pessimistic)

I think the party line should be to boycott surgery, encourage all to seek NA, but root for the successful outcome of FDA Phase III injections.