Rogue Medic: Bone Marrow Donations Blocked By A Bad Law

Friday, October 30, 2009

Bone Marrow Donations Blocked By A Bad Law

First, a little information about the process of bone marrow donation. I do not know if this is being used regularly, or anything about the outcomes of the patients it is being used on, but it looks as if it should lead to much better outcomes.

Now, the part about the bad law.

Saving Lives: Challenging the Ban on Compensating Bone Marrow Donors

I have been registered with the National Marrow Donor Program for a couple of decades. I have not yet matched any patient in need of a bone marrow transplant.

Why donate?

Bone marrow donation may be the difference between life and death for a patient. Bone marrow donation would not be a major inconvenience for me. The comparison is not even close. Too often, I put up with major inconveniences for much less of a good outcome.

There are some pretty personal questions that need to be answered, but you can review the exclusion criteria here.

I will have at least one more post on the problems with donation regulations.

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1 Comments:

PJ Geraghty said...: Every time the discussion begins anew about compensating donors, the same issues are brought up...it would increase the ability of the rich to obtain organs, it would exploit poor, desperate people for their organs...it's not without complications for the donor, etc. All of these are legitimate issues.

What is rarely brought up is the potential for greed on the donor's part having a negative impact on the recipient. Donors, of course, require medical screening. If there is a financial incentive to donate, there is a corresponding incentive to lie about the suitability of the donor. There are donor conditions that, if unreported, might go undetected and which could be harmful or fatal to the recipient. This is a major reason that blood donation is now entirely unpaid.

I'm all for removing financial disincentives to donation, but paying people to be donors opens up a large box of unintended consequences.; Friday, October 30, 2009 9:13:00 PM EDT

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Some Quotes

what is not true, as everyone knows, is always immensely more fascinating and satisfying to the vast majority of men than what is true - H.L. Mencken.

Every valuable human being must be a radical and a rebel, for what he must aim at is to make things better than they are. Niels Bohr.

How wonderful that we have met with a paradox. Now we have some hope of making progress. Niels Bohr.

An expert is a man who has made all the mistakes which can be made in a very narrow field. Niels Bohr.

Every sentence I utter must be understood not as an affirmation, but as a question. Niels Bohr.

Some subjects are so serious that one can only joke about them. Niels Bohr.

I have no special talents. I am only passionately curious. Albert Einstein.

Few people are capable of expressing with equanimity opinions which differ from the prejudices of their social environment. Most people are even incapable of forming such opinions. Albert Einstein.

Never memorize what you can look up in books. Albert Einstein.

The prestige of government has undoubtedly been lowered considerably by the prohibition law. For nothing is more destructive of respect for the government and the law of the land than passing laws which cannot be enforced. It is an open secret that the dangerous increase of crime in the United States is closely connected with this. Albert Einstein.

the chance is high that the truth lies in the fashionable direction. But, on the off-chance that it is in another direction - a direction obvious from an unfashionable view of field theory - who will find it? Only someone who has sacrificed himself by teaching himself quantum electrodynamics from a peculiar and unusual point of view; one that he may have to invent for himself. I say sacrificed himself because he most likely will get nothing from it, because the truth may lie in another direction, perhaps even the fashionable one. Nobel Prize speech - Richard Feynman.

So we really ought to look into theories that don't work, and science that isn't science. Cargo Cult Science - Richard Feynman.

I call these things cargo cult science, because they follow all the apparent precepts and forms of scientific investigation, but they're missing something essential, because the planes don't land. Cargo Cult Science - Richard Feynman.

If you've made up your mind to test a theory, or you want to explain some idea, you should always decide to publish it whichever way it comes out. If we only publish results of a certain kind, we can make the argument look good. We must publish both kinds of results. Cargo Cult Science - Richard Feynman.

If a reasonable launch schedule is to be maintained, engineering often cannot be done fast enough to keep up with the expectations of originally conservative certification criteria designed to guarantee a very safe vehicle. In these situations, subtly, and often with apparently logical arguments, the criteria are altered so that flights may still be certified in time. They therefore fly in a relatively unsafe condition, with a chance of failure of the order of a percent (it is difficult to be more accurate).

Official management, on the other hand, claims to believe the probability of failure is a thousand times less. One reason for this may be an attempt to assure the government of NASA perfection and success in order to ensure the supply of funds. The other may be that they sincerely believed it to be true, demonstrating an almost incredible lack of communication between themselves and their working engineers. Rogers' Commission Report - Richard Feynman.

For a successful technology, reality must take precedence over public relations, for nature cannot be fooled. Rogers' Commission Report - Richard Feynman.

Science is a way of trying not to fool yourself. The first principle is that you must not fool yourself, and you are the easiest person to fool. Richard Feynman.

Science alone of all the subjects contains within itself the lesson of the danger of belief in the infallibility of the greatest teachers in the preceding generation ... Learn from science that you must doubt the experts. As a matter of fact, I can also define science another way:

Science is the belief in the ignorance of experts. Richard Feynman.

The only way to have real success in science, the field I’m familiar with, is to describe the evidence very carefully without regard to the way you feel it should be. If you have a theory, you must try to explain what’s good and what’s bad about it equally. In science, you learn a kind of standard integrity and honesty. Richard Feynman.

Some people say, "How can you live without knowing?" I do not know what they mean. I always live without knowing. That is easy. How you get to know is what I want to know. Richard Feynman.

I don't know anything, but I do know that everything is interesting if you go into it deeply enough. Richard Feynman.

So, to test the prevailing intellectual standards, I decided to try a modest (though admittedly uncontrolled) experiment: Would a leading North American journal of cultural studies . . . publish an article liberally salted with nonsense if (a) it sounded good and (b) it flattered the editors' ideological preconceptions?

The answer, unfortunately, is yes. Alan Sokal.

Medicine is a science of uncertainty and an art of probability. William Osler.

Common sense in matters medical is rare, and is usually in inverse ratio to the degree of education. William Osler.

The greater the ignorance the greater the dogmatism. William Osler.

The desire to take medicine is perhaps the greatest feature which distinguishes man from animals. William Osler.

One of the first duties of the physician is to educate the masses not to take medicine. William Osler.

In the fields of observation chance favors only the prepared mind. Louis Pasteur.

Science knows no country, because knowledge belongs to humanity, and is the torch which illuminates the world. Science is the highest personification of the nation because that nation will remain the first which carries the furthest the works of thought and intelligence. Louis Pasteur.

Not far from the invention of fire must rank the invention of doubt. Thomas Henry Huxley.

The great tragedy of Science — the slaying of a beautiful hypothesis by an ugly fact. Thomas Henry Huxley.

The foundation of morality is to have done, once and for all, with lying; to give up pretending to believe that for which there is no evidence, and repeating unintelligible propositions about things beyond the possibilities of knowledge. Thomas Henry Huxley.

My business is to teach my aspirations to conform themselves to fact, not to try and make facts harmonise with my aspirations. Thomas Henry Huxley.

There must have been a time, in the beginning, when we could have said – no. But somehow we missed it. Tom Stoppard

Footnotes

^- I am attempting to make it easier, when I use research, to navigate to the information in a footnote, look at the information, and return to where you were. If you click on the number of a footnote in the text^[1] <- click on the [number], it will take you to where the [information] in the side bar is at the top of the screen. A blog post that has been very helpful in teaching me this is How to make real footnotes from TypePad versus WordPress. If you click on the "back to footnote" up arrow in front of the information -> ^ [information] <- click on the ^, it will take you to where you clicked on the footnote, with the footnote at the top of the screen. . . . . . . Up Here ^

Disclaimers

This is a mostly medical blog, so here is the HIPAA incantation to ward off evil whiny spirits.

HIPAA (Health Insurance Portability and Accountability Act of 1996) is generally misrepresented by those in health care, but there are no violations of HIPAA here. There are some patients I could not discuss without changing details, so details may be omitted, or changed. That may decrease the dramatic effect of some of what I write, but patients are entitled to their privacy and have been since before HIPAA became the ignorant administrators' equivalent of a two year old yelling NO!

I am not dispensing medical advice. If you accept medical advice off of a blog, instead of consulting a physician, you probably should not be treating anyone, including yourself.

I do not have any connection to the products I mention, other than using them and being satisfied, dissatisfied, or some combination of the two. If I have any potential conflict of interest, I will mention it clearly.

What I write does not change your protocols. If you do not like a protocol, take it up with the medical director. I have several inadequate protocols, too. I call medical command and persuade the physician that what I am requesting is in the best interest of the patient. It is rare that I am turned down, but the dose is often inadequate. I call back before I need more, so the patient does not have to put up with the OLMC delay in treatment. Health care providers should be anticipating where the care of the patient is headed - both for good and for bad.

I may be blunt, but I do not mean it personally. There are few mistakes that can be made that I have not made. I continue to try not to be stupid; you may conclude that I fail.

I welcome any relevant comments and much that is not relevant. I reserve the right to delete any inappropriate comments. I decide what is appropriate based on my own nebulous standards. Criticism of ideas is expected. Criticism of writing style is appreciated.

I avoid obscenity because I believe that the English language provides enough opportunities for creativity that resorting to the words that may not be said on TV (and some that may) is unnecessary. I may quote something that contains some of these words, or I may link to something that does, but that is as bad as I will be with those words.

On the other hand, you may feel that the ideas I present are offensive. My aim is to encourage thought, dialogue, and creativity - not to tell you everything is OK. You may leave this blog at any time and bury your mind in comfortable, familiar ideas.

If you feel that the ideas I present are not challenging, please encourage me to address whatever you feel I do not adequately address.