Posted on 11/26/2007 10:52:06 AM PST by blam
Row over 'tree man' virus samples
By Felix Lowe and agencies
Last Updated: 5:00pm GMT 26/11/2007
An Indonesian fisherman who developed tree-like growths on his hands and feet is at the centre of an international medical spat after his country's health minister criticised doctors trying to treat him.
Indonesia's health minister, Siti Fadilah Supari, lambasted the US doctor currently treating the 35-year-old man, who has the rare affliction caused by the Human Papilloma Virus.
Indonesia's health minister Siti Fadilah Supari (second right) inspects Dede's tree-like growths
Mrs Supari is angry that Dr Anthony Gaspari has taken blood and tissue samples out of the country to the United States in a bid to diagnose the illness. She claims such samples could be used in the future to make vaccines that the poor could not afford.
Developing nations such as Indonesia risk exploitation unless they maintain control over their virus strains, Mrs Supari said.
But her comments have now offended Dr Gaspari, an American dermatologist at the University of Maryland, who maintains that, while he took the samples without permission, his sole motivation was getting treatment for the man.
Known simply as Dede, the man, who lives in a village south of the capital Jakarta, has massive root-like warts growing from his arms and legs which have gone untreated for years.
"We did take samples, and the reason we did was to render a diagnosis. We did it for humanitarian reasons, to help the patient," Dr Gaspari said, stressing his willingness to put in writing that the samples were not for commercial use.
Mrs Supari, who has famously refused to share bird flu samples with international scientists, made her comments on Sunday after returning from a World Health Organisation (WHO) conference in Geneva.
"We are offended because the samples were taken from Dede without our permission," she told reporters at the hospital where the man was being treated. "If they are taken abroad, they could become lucrative commodities."
The intergovernmental conference was aimed at rebuilding a global system for sharing viruses. Indonesia is the nation the worst hit by bird flu, with a total of 91 human deaths recorded.
Mrs Supari has, however, steadfastly refused to share samples of the deadly H5N1 strain of the disease until she receives assurances they will not be used to make expensive pandemic vaccines.
For its part, WHO wants to make sure the virus has not mutated to a form that spreads more easily between people.
Virus Ping.
Better for people to die than risk a company making money
Gives whole new meaning to “Getting a woody”.............
I wonder why that poor man hasn’t died from secondary infections? His “hands” look like a good place for that.
What a friggin’ moron. Probably a socialist.....
Bigger question. Were they taken with Dede's permission? Or does "The State" own the patent on his illness?
All those sex-starved NEA teachers should show that photo in their child sex education classes.
Huh? Is he trying to accuse America of using these infections for our benefit? Lemme guess, in this moron's next breath he criticized Americans for doing nothing to combat turd-world (did I say turd, I meant third) afflictions.
He can’t throw well but he’s a hell of a fielder.
virus ping
(Thanks, blam!)
Thanks for the ping. I saw photos elsewhere of this poor man, how horrible for him. I doubt any blood samples would be of any profit to anyone, but I hope it could help him in some way.
“Mrs Supari has, however, steadfastly refused to share samples of the deadly H5N1 strain of the disease until she receives assurances they will not be used to make expensive pandemic vaccines.”
Yeah, wouldn’t want a vaccine after all.
As if the viruses are an asset.....is that the argument? Is there any mystery to why these countries remain mired in poverty and disease? Unbelievable.....simply unbelievable.
“We are offended because the samples were taken from Dede without our permission,”....
&&&
Well, maybe Dede should be offended that your country is so backwards that no one there has been able to treat his horrible disease beyond shaking chicken entrails at it.
It can be argued that the degree of success or advancement of the economic status of the bulk of the individuals in any country is pretty much dependant on the individual’s ability to have and hold and direct their personal property. This includes both low or non-existant confiscatory taxes, low levels of graft or bribery required to conduct business, freedom of movement, association and investment, and little or no banditry by government, militias or Achmed Blow.
The way this woman is talking about the country owning the viruses, their citizen’s blood, controlling treatment protocols, etc. I am assuming this is pretty much a third world country.
The Republic of Indonesia is the world’s most populous Muslim-majority nation.
Need I say more?
This lady should be cleaning bedpans, not blabbering about medical care policies. We can see where her brilliant policies have gotten this poor man.
Anything taken from this man’s body is his to give. He chose to give it to a doctor who is really trying to help him. Now it belongs to the doctor, unless the patient specifically retained some rights to it. His condition is so extraordinarily rare that any medication developed specifically from his sample would surely be one of those “orphan drugs” that has no profit potential at all. The extreme growths he has are the result of a problem with his immune system’s response to a common virus, not some extraordinarily virulent or rare strain of the virus.
I think the growths are largely cut off from his circulatory system. They are giant warts. Must be some circulation into them, or they’d just chop off the worst of them, but I think that’s the basic explanation for the lack of infection.
Actually his hands look just perfect for punching this dingbat “health minister”.
He took it without her permission because she’s a socialist dolt who refused to give her permission.
Does anyone imagine that there is big money to be made in treating tree disease? How many prescriptions would you sell for this illness in the US? What a maroon.
But it’s a curious scientific question what causes this, and it’s worth trying to find a cure for this guy and also to investigate what causes something like this to happen.
Yes, viruses can be an asset, cellular lines can be a (hugely profitable) asset, biologicals can be patented, and the medicine made from them can be worth untold millions.
If you want to be angry, start with the patent office which has allowed naturally occurring biologicals to be patented. The scientific and patent communities are beginning to re-think certain aspects of this issue, but damage has been done and in some places, governments are balking at handing over what may turn out to be worth huge piles of cash.
Do a search for the HeLa cell line to see how important a few cells can be and how much controversy there is over patient consent.
He's Dede, Jim...
How much is it worth if his virus, which is a common-to-humans virus, is somehow different and they are able to use his samples to solve the problem of why viruses sometimes kick into overdrive like his is doing? Can you imagine how much that would be worth?
IMO, the doctor should have asked. Maybe he would have had to have taken the samples to help the guy if his request was turned down, but as it is, we'll never know because he didn't ask.
I wouldn't like a foreign doctor coming here, practicing medicine without the permission of our government. These people don't either. What's controversial about that?
Mrs Supari has, however, steadfastly refused to share samples of the deadly H5N1 strain of the disease until she receives assurances they will not be used to make expensive pandemic vaccines.
I saw this as pertinent, too. Seems like a question of 'turf' to me.
Every human being has an inalienable, indefeasible, God-given right to self-preservation. Any governmental interference with that right must be called by its proper name: tyranny.
The mere suggestion that a government, ANY GOVERNMENT, has the right to control the virus or to restrict citizen access to treatment is reprehensible. This man is not a citizen, he’s a subject.
If the government claims a right to restrict access to the virus or blood samples, that would then seem to impose a concommitant, reciprocal duty to treat the poor fellow. They’ve obviously failed miserably and they are hopelessly backward.
Well, maybe, just maybe, THE INDIVIDUAL is in the best position to assess who is able to provide the best treatment, not the government? Just a thought....
This poor man is infected with a novel strain of the virus. Said doctor returns to the US, discovers useful and profitable properties of said virus and takes out a US patent.
For some reason the virus samples die off, and in order to 'protect' his patent the doctor now has the legal right to obtain more samples with or without the patients permission....
L
Yep, because somewhere in the Koran Allah said he was a Marxist-Leninist opposed to anyone ever making a profit. Yep, sure. This woman seriosuly needs to stop reading Marx.
Intellectual property rights do not trump the right to maintenance of bodily integrity.
I seem to recall reading somewhere that the Moose-slime view of disease and affliction is that it is Allah’s will. That may account for some reticence to treat this disease.
So you are in favor of foreign doctors coming here and practicing medicine behind the back of the local licensing boards, as long as individuals agree to it?
Or are you against medical licensing altogether, and you’d like a chance to try your theory and go it alone?
Here’s a case where that happened: http://www.northcountrygazette.org/news/2007/11/10/dental_death/
You can see for yourself how it turns out when unlicensed doctors work in the US.
Our country, our rules. Other country, their rules? Don’t like it? Don’t go there. That’s how we do it here, and we call it sovereignty. They do too.
I agree that he has a right to seek treatment, but foreign doctors don’t have an automatic right to practice in this country. We have rules and licensing to prevent that. This doctor didn’t seek the proper permissions to treat in that country. He broke the rules.
Foreign doctors don’t have that right in our country, either. Why is this doctor demanding what a foreign doctor wouldn’t get here?
I don’t want doctors coming here and demanding the same privileges the doctor claimed in this case - practicing medicine without supervision. Why do you think that this is a good idea?
I have no knowledge of whether your assertion is actually enshrined in law or not. Nor do I know of any case law on the matter.
But it's an interesting little thought experiment nonetheless.
L
The right to any treatment by any doctor is not a right, either.
Think it is?
The FDA would stridently disagree with you.
I tend to agree. This "Health Minister" thinks that there are so many cases of this that drug companies are going to invest the millions to tens of millions to hundreds of millions of dollars into a cure so that they can make a few hundred dollars of a profit???
Besides, if Indonesia "owns" a virus, they should be made to pay for the depredations that it does around the world, shouldnt they? It's "theirs" after all.
What a concept.
In taking those samples the doctor was practicing science, not medicine. Many thousands of foreigners come to the U.S. to practice science without the government’s permission.
The foundational premise of licensing, any licensing, is that the government knows what is best for us. Bunk.
Sovereign individuals, not the government or government agencies, must be the ultimate decision makers. If an individual wishes to seek the treatment of a witch doctor, an accupuncturist, a midwife, a naturopath, what business is it of the government?
Furthermore, licensing does not insure competance. It merely provides a false sense of security. How many people are injured annually by licensed physicians?
I’d rather go it alone. I don’t need or want the government to “take care of me” “for my own good.”
Ah yes, the undying cells of Henrietta Lack was it?
I don’t know if he asked or not. But he would certainly have known that this woman refuses to cooperate with WHO in their efforts to control the bird flu epidemic. So if he traveled all the way to Indonesia to visit this patient, he presumably knew ahead of time that she had a record of refusing to release vital medical information.
Yes, you are right. Sometimes highly unusual cases provide the information needed to understand a scientific problem. If so, the knowledge could be priceless, but priceless mainly in the sense of advancing biological knowledge, not money in the pockets of the drug companies—probably.
And if it were, so what, if it leads to a new cure?
Then who owns my body? The government and the FDA? Puh-lease.
I have a God-given right to seek out any treatment I deem appropriate for my situation. The government is not the source of my rights and I refuse to acquiesce to the fallacious notion that the government can tell me how to treat any disease that by afflict my body.
Query: How many people have died waiting for FDA “approval” of life saving drugs?
Why do you think the government has the right to guide or direct the treatment of any individual? Why isn’t the choice of whether to utilize the services of a foreign doctor or an American doctor strictly within the purview of the individual?
The government has taken unto itself several duties for which there is no authorization. We are nothing more than a bunch of timid animals who have been conditioned to ask permission of the all-powerful state to treat ailments and afflictions of our bodies. What is wrong with this picture? Why do you so willingly acquiese?
Who do “the rules” serve? The patient? Or do they serve to perpetuate governmental power?
After all, you can lose your RKBA here over a felony in Mexico (posession of a .22 round).
If so, most jurisdictions preclude profiting from crime, and AFAIK, that is not necessarily restricted to US law.
Thus, while he may benefit intangibly from whatever he can learn, I do not see where he could legally reap a profit from the knowledge, as technically, any information he gleans is the result of obtaining samples in violation of Indonesian law..
Now we weigh the man's individual welfare against the Law of his land, and there is a point.
The samples should have been obtained (if at all possible) with the OK of the government ministries involved there and appropriate agreements and concessions made in regards to any spinoff intelectual rights steming from the study of the virus, within the scope of the agreement, and all up front.
Then everyone gets a slice of any pie to come out of the oven, and maybe the guy gets better, too.
I say "everyone" because I would bet the ministers/ministries/researchers there involved would want their slice, too, and are not altruistically protesting because they think this fisherman is going to come up on the short end.
I'd bet the guy would be happy to be able to scratch certain parts without fear of serious self-inflicted damage.
Yet another offended Raghead, albeit in this case an "educated" female of the species.
Mrs Supari has, however, steadfastly refused to share samples of the deadly H5N1 strain of the disease
Dog in the manger, or sow in the trough? When do clinics & drug stores begin burning?
Exactly what's wrong with putting money in 'the pockets' of drug companies? Drug companies are composed of literally millions of share holders, many of whom count on that evil drug company putting money in their pockets in the form of dividends.
Millions of others count on the drug companies making a profit so the value of the stock they bought in said drug company increases in value.
What is it with the continual bashing of risk-takers these days? Finding and bringing to market new drugs is quite likely one of the riskiest business ventures in history. It literally costs hundreds of millions of dollars to bring a new drug to market and yet people feel the need to bash the companies that are literally saving their lives.
It's one of the stupidest things I've ever seen in my life...
L
This is interesting considering has just gone down between Supari and the W.H.O. and the U.S. in regards to getting samples of the hi path H5N1 that has an 80% CFR in Indonesia. I have no doubt this poor soul would never get treated in Indonesia.
http://scienceblogs.com/effectmeasure/2007/11/flu_virus_sharing_summit_wrap_1.php
Wow,Bump,God bless Him.
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