Feedback my opinion page

Comment from a highly respected MD and PhD who has done both clinical and research work in neurology:

A provocative page and food for thought. I sure agreed with the top part on
not screwing around on your health just to save a few bucks.

I was really interested to see your take on competition in research. I have
to think about that some. Competition certainly has as many good aspects as
bad. For instance, it causes people to busts their buts working day and
night and weekends trying to beat out someone who could publish before them.
And once you publish, you have to give out all your reagents even to your
competitors (because you have to agree to do that to publish in any good
journal). There is an enormous amount of collaboration going on in science;
I have engaged in many productive collaborations with incredibly generous
scientists from other labs, who have often shared their reagents with me
before they have even published them themselves. I give out all of our
reagents and protocols, even to direct competitors, and I know many
scientists who do the same. You tend to hear the bad stories. The reason I
prefer to focus on my own ideas is not for credit but because I really want
to know the answers to certain important questions (like why the CNS doesn't
regenerate) and I think many of my ideas are pretty good! I was offered a
position running a new neurobiology group at Millenium Pharmaceuticals last
year and I thought about some of these issues. The idea of team work and a
collaborative effort toward a common goal appealed to me, but the loss of
academic freedom to pursue my own ideas and the thought that I might someday
have to work on some idiots ideas were intolerable to me. Because I don't
want to waste my time. At the present time, American science is hurtling
forward at an incredible rate. It may not be a perfect system, but I believe
it is the best in the world and deserves way more credit that you are giving
it.

Judah Folkman is one of my personal scientific heroes. He is a remarkable
character who has perservered through thick and thin in his line of research
for 30 years and has discovered a family of blood vessel growth inhibitors,
angiostatin and its homologues, that are going to revolutionize the
treatment of cancer. Anybody who says they can't reproduce his results, at
this early stage in the game, should be strongly doubted. Negative results
don't mean anything, especially when they are from people new to the field
and with much less experience than Folkman. It is in the interest of
Genentech, for instance, one of the companies that said they can't reproduce
his work, to say stuff like that because they are trying to develop their
own competing products. If he says angiostatin blocks tumor growth in mice,
then I believe it. This is not a guy who trys to make a big splash; he's
someone whose stuck with the same problem for 30 years and developed all the
basic science carefully step by step. The story of angiostatin is a
beautiful, internally consistent, story. He gave a spectacularly good talk
at STanford a couple of years ago (The second annual Zapphoroni lecture) and
it is available on videotape if you would like to hear it.

<and a second comment from the same individual who is an MD and PhD>

Reflecting on what Les had to say last night, I find it a sad commentary
on modern managed care. That a triathloner should present with back pain
and no weakness and end up with a weak foot is inexcusable. Yet he was
treated "by the book" for managed care. In the old days, he would have
been admitted into the hospital the day he hurt his back and been examined
daily, by a neurologist, for any signs of weakness. Thus he would have
avoided the daily trips to the doctor he had to make as an out patient
which couldn't have helped. And he could have been operated the day he
developed foot weakness as opposed to several days after. More importantly
he would have been seen by a neurologist right away who would have probably
detected a subtle weakness undoubtedly missed by the GP who saw him (who
only tested to make sure he could stand on heels and toes, thus testing
only for a gross weakness).

It's a sad commentary on modern medicine. The frustrating thing is that
the managed care "experiment" is not a real experiment. No data is being
collected on the relative merits of each system; clearly it's an effective
way of containing costs. But do we really want to pay that price? I had my
own experience with managed care when I developed breast
cancer a couple of years ago (it runs in my family; we have the common
Ashkenazi Jewish BRCA mutation). Fortunately it was picked up real early
before it spread, but the managed care system discharged me after bilateral
mastectomies on the same day as the operation (#@$%!!) even though I
couldn't walk, eat, void, and had severe pain). Fortunately I have a
greater than 90% chance of being cured (and I have had all the at risk
tissue, that is breast and ovaries, excised), so I am fine now, but it was
an unpleasant experience.

I don't know what the answer is but apparently our society has deemed
that a substantial sacrifice in the quality of health care is appropriate
to contain costs. Les is not totally paralyzed so there is a good chance
he will have some substantial recovery of strength; how much recovery only
time will tell. He seems like an awfully nice guy and my heart really goes
out for him. Let me know how he does.

From another MD:

Interesting opinions....
1) I agree that the "system" is flawed in that it is designed to give
"reasonable" care to the most amount of people at a reasonable cost.
That is, due to limited resources, whether its equipment such as MRI,
good doctors, or organs for transplant, there can be a shortage, and
healthcare often has to be rationed. FOr instance, at the VA, the
govt. allocates a certain amount of health dollars which means we have
a certain numner of MRI's available which means some patients who have
cancer may wait for 2 weeks to get there scan. It seems intolerable,
but its better than anywhere else in thje world. In canada, you would
wait 3 months, in Africa, you'd go to a witch doctor. In the grand
scheme, there is not the financial structure (nor should there be) to
support a "health-care-on demand" for every citizen in the U.S. THIS
IS NOT TO SAY THAT THOSE WHO CAN AFFORD A HIGHER LEVEL OF CARE SHOULD
NOT SEEK IT. BY ALL MEANS, YOU CAN ALWAYS FIND DOCTORS WHO WILL AVAIL
THEIR SERVICES/EQUIPMENT TO HIGH BIDDERS.

This type of 2-tiered system may feel anti-democratic, but it already
exists in subtle ways. In my opinion, everyone is entitled to a basic
health service. Basic heatlh service will not get you an immediate
MRI for low back-pain. This delay, on occasions, can have medically
serious consequences. But, you get (or don't get what you paid for
through your insurance plan. IF YOU WANT MORE, YOU CAN ALWAY GET
BETTER CARE IF YOU CAN AFFORD IT! Steve, you are in this group, and I
urge you to take full advantage. This type of super-care is a
privilige, not a right, and only those who can afford it will have
access to it. I have no problems with a 2-tiered system.

2) Inefficiency of medical research: it's a tradeoff. drive for
career & glory vs. drive for profits. in neither do you have complete
intellectual freedom, but the system still works and both industry and
academia have played huge roles in the expansion of medical science in
the last 20 years. Effective collaboration and teamwork HAS been a
key component of this!

From: Jim Roskind ([email protected])

From my experience, your suggestion in pretty far off base.

There is a a really good paper suggesting that an MRI is a very poor diagnostic tool. Simply put, too many folks with *no* back problems end up having stuff that shows on an MRI :-/. As result, finding based upon an MRI *only* are nearly useless. I've had MRI and CAT scans. In the end, MRI seemed the least conclusive of all, and at best provided supporting evidence garnered from other tests (reflexes, strength, xray, etc.). (...but it is wicked cool technology!!!! ;-) ).

There is lot of evidence that too many folks are getting back surgery that is doing little to help them, and a lot to hurt them. The suggestion that conservative treatment be explored first is quite correct. Lots of doctors are in lots of distinct camps on this... but I've been reading a LOT of stuff, and I think your pages are pretty misleading.

With regard to your "quote" from a doctor, the assertion that "most surgeons" want back surgery asap "even when there is only pain" is (from my experience) far from accurate. The only doctor I've found that spoke cavalierly about back surgery to date is Carragee at Stanford. I think he's probably more than quite good, but I believe he's also overly zealous about surgery.

If you'd like to hear a good "surgery is dangerous" story, you could talk about a friend of mine that had a fusion performed on his mother. Aside from the large risks of general anesthesia, and the risk of surgery near the central nervous system, back surgery often entail major abdominal entry (yes, they routinely enter from *both* the front and the back during a single fusion!!!). A small mistake was made on my friend's mother during 12 hour surgery, whereby a blood vessel to the intestines was clamped. Most of the intestines had to be removed, and then all sorts of other organ failures followed. The good news is that she *never* woke up from the surgery, felt no pain, and was (I think) gone within about a week.

Back surgery is nothing like knee surgery. Bad knee surgery can leave you with a limp. Bad back surgery can leave you bedridden, with debilitating pain, or simply paralyzed from the belly button down (to pick a convenient point of reference). Trying to cut the process short, and not get a second opinion, is IMO stupid.

...well... that's how I see it.

Jim