R
Radioactive Man
Guest
My employer is promoting the Tour de Cure 150 mile bike ride which is done in April (from
Knoxville, TN). I believe the entry requirement is to raise $150 from in donations and pay a $30
entry fee. Being a triathlete (thus already riding a few miles anyway) and having the type 1
disease myself, I am seriously considering signing on. However, I have a lot of unanswered
questions about how this actually helps fund useful diabetes research, provides medications to
those who cannot afford it, etc.
I have seen these sorts of events take place for many years, but I'm left wondering where are the
results? If research is being funded by all these charitable contributions, then shouldn't we be
seeing some non-proprietary drugs and procedures entering the market? I looked on the Tour de Cure
web site (http://tour.diabetes.org) and couldn't find any useful info as to what specific studies or
activities are being funded.
My own experiences with the U.S. health care system only compound my frustration with it. Upon
diagnosis, the very first thing my doctor did was prescribe me two very expensive and very
proprietary insulin formulations (Lantus and Novolog), for which I've ended up paying much of the
costs out-of-pocket.
On top of that, I've also been affected by the lack of availability of experimental treatments and
all the hoops through which drug companies must jump before any significant portion of the
population can benefit. In my case, I am speaking of the fact that I could not get access to a drug
with high potential benefits and minimal side effects. Specifically, it was Diapep 277 - I tried to
get into a clinical trial of this drug (with randomized 50% placebo) but failed because my c-peptide
levels were too low. This drug has already been tested in other countries and found to stop or
significantly slow the progression of type 1 diabetes. The catch is that it must be administered
early enough to save the few remaining beta cells. It would not have gotten me off insulin, but it
would have resulted in better control and lower insulin doses over the long run and probably only 1
daily basal injection instead of the 2 that I currently use. At this point, it is almost too late
for this drug to be of benefit to me, except for the possibility of preserving the tiny remaining
fraction of beta cells for future cloning.
Logically, the mortality rate and severe complications associated with the type 1 disease should be
weighed against the side effects of any new treatments. Unfortunately, this does not seem to be the
case in the U.S., thus even well-funded research is doomed to years of waiting for regulatory
approval while those with the disease are killed and maimed by it.
Again, I'm left asking the question of who actually benefits from all these fund-raising events held
by the ADA and others? If I cannot see good results from these sorts of events, then I cannot, in
good conscience, ask my friends, family, fellow church members, etc. to support it.
Knoxville, TN). I believe the entry requirement is to raise $150 from in donations and pay a $30
entry fee. Being a triathlete (thus already riding a few miles anyway) and having the type 1
disease myself, I am seriously considering signing on. However, I have a lot of unanswered
questions about how this actually helps fund useful diabetes research, provides medications to
those who cannot afford it, etc.
I have seen these sorts of events take place for many years, but I'm left wondering where are the
results? If research is being funded by all these charitable contributions, then shouldn't we be
seeing some non-proprietary drugs and procedures entering the market? I looked on the Tour de Cure
web site (http://tour.diabetes.org) and couldn't find any useful info as to what specific studies or
activities are being funded.
My own experiences with the U.S. health care system only compound my frustration with it. Upon
diagnosis, the very first thing my doctor did was prescribe me two very expensive and very
proprietary insulin formulations (Lantus and Novolog), for which I've ended up paying much of the
costs out-of-pocket.
On top of that, I've also been affected by the lack of availability of experimental treatments and
all the hoops through which drug companies must jump before any significant portion of the
population can benefit. In my case, I am speaking of the fact that I could not get access to a drug
with high potential benefits and minimal side effects. Specifically, it was Diapep 277 - I tried to
get into a clinical trial of this drug (with randomized 50% placebo) but failed because my c-peptide
levels were too low. This drug has already been tested in other countries and found to stop or
significantly slow the progression of type 1 diabetes. The catch is that it must be administered
early enough to save the few remaining beta cells. It would not have gotten me off insulin, but it
would have resulted in better control and lower insulin doses over the long run and probably only 1
daily basal injection instead of the 2 that I currently use. At this point, it is almost too late
for this drug to be of benefit to me, except for the possibility of preserving the tiny remaining
fraction of beta cells for future cloning.
Logically, the mortality rate and severe complications associated with the type 1 disease should be
weighed against the side effects of any new treatments. Unfortunately, this does not seem to be the
case in the U.S., thus even well-funded research is doomed to years of waiting for regulatory
approval while those with the disease are killed and maimed by it.
Again, I'm left asking the question of who actually benefits from all these fund-raising events held
by the ADA and others? If I cannot see good results from these sorts of events, then I cannot, in
good conscience, ask my friends, family, fellow church members, etc. to support it.