U.S.Women with breast cancer denied access to lifesaving treatment

Great Debates
61

Yeah, wouldn’t it be grand. Maybe Ms. Esterly could try some laetrile. Maybe she could even make it at home … what does it matter if she doesn’t know how to remove the cyanide?

And if she decided that she felt a little tense, she could grab her own sedative. We could point her to web pages where she could get some thalidomide … very effective as a sedative.

And on and an and on …

The system we have now is not perfect. It can take a long time to get effective treatments qualified. Probably a few effective treatments are not approved. But we are protected against many dangerous drugs, treatments, and people.

Throwing out regulation is not the answer. Sick and scared people are easy prey, and there’s no lack of potential predators. Or do you believe there’s nobody out there who would prey on sick people? Do you think that there are no treatments that are dangerous and inefective, but some people think they are great?

62

And what if treatment X never works, but she doesn’t take the treatment that sometimes works because someone (who makes a lot of money from treatment X) tells her that treatment X works? What if treatment X doesn’t work but does actual harm? What if treatment X actually does work 1 in 1000 times, and works on Ms. Esterly, and her endorsement is used to seduce people on whom it won’t work away from other therapies? What if limited research support money is diverted from promising programs to hopeless programs? And … there’s lot’s more, but I hope you get the idea.

Medical regulation protects us from far more harm than it cuases.

I recomend that you look at How Quackery Harms

63
64

Um, Jo Ann, if you planned to respond (instead of just quoting) the text didn’t make it.

Smartass said:

In a way, I agree with you. I have a strong libertarian streak that says, “Hey, if you are presented with all of the evidence and still want to do it, goferit.” However, that does not allow fraud or liars. While I am not sure if this doc is either, he sure seems to be light on the evidence. If he presented his actual evidence (say that it works 1 in 1000 times) and Jo Ann still wants to do it, that’s her choice. But that’s not what he’s done. He’s made claims and refused (or not been able) to back them up. That, to me, is a whole different kettle of fishiness.

65

JonF:

And if she does any of these things, the person she has hurt is…herself. She currently has a fatal disease. Without a cure, she will die, and you will continue on your merry way. Do you really feel comfortable saying it is better for someone else to be making her decisions for her?

And if not all of us want to be “protected”? I have no problem with scientific enquiry into the efficacy of medicines. I say the more information you have, the better decisions you can make. The problem I have is with this presumption of making life-and-death decisions for other people.

-VM

66

Smartass said:

So we should allow fraud and bogus claims to go along their merry way? Or should we protect people from such hucksters?

67

If she takes the treatment and becomes sicker would she be no longer be eligible for treatment funded by taxpayers or private insurance contributors?

picmr

68

David B:

I think you are talking about two different things. I believe we already have laws that allow us to punish people for fraud.

As for protecting people, I would say it depends on how you want to go about it. If you want to protect them by giving them good information on treatments, warning them about treatments that don’t work, or suggesting sources of additional information; I would say you were doing a good deed. If you want to protect them by making their decisions for them, I would say that you are taking away their freedom.

I believe that freedom includes the right to make a bad choice (obviously, if this bad choice is deciding to kill someone, that is a separate issue).

-VM

69

Smartass said:

Yes, and the FDA is one organization that helps enforce those types of laws – in particular, the types related to medical claims.

Is it “making their decisions for them” to keep snake oil hucksters from peddling their wares? I don’t think so. I made comments a little earlier today about my thoughts on this, and you didn’t respond to those.

Yes, provided they are allowed all the information and the person providing the other side is not doing so fraudulently (either intentionally or not). I think this is just such a case. He will not or cannot provide evidence, yet he continues to make his claims. This is “taking away” freedom in the same way that protecting folks from con artists is “taking away” freedom. There is a line, and this is past it, IMO.

70

picmr:

Ah, picmr my friend, we haven’t grapple in several threads. Obviously, you probably know that I am against having the taxpayers fund treatments. As for private insurance contributors, I believe that is a business decision for them, for which they will answer to the market.

-VM

71

Oops. That should have read, “As for private insurance companies…”

-VM

72

David B:

I would say that if Dr. SnakeOil claims that his treatment will cure cancer and it doesn’t, then he has committed fraud and we don’t need a massive bureaucracy and set of regulations in order to convict him of it. On the other hand, if he says it might cure cancer, then it is not fraud. Obviously, you think the chances of this happening are vanishingly small (as do I), but I don’t think that puts you or I in the position of evaluating these chances for the person whose life is at stake. Like I said, the more information the better, but I still think it should be her choice.

I assume you are referring to this:

I think if he is making unwarranted claims, then those who have fallen victim (or their families) could address this with civil litigation. I don’t think it justifies the monster that the FDA has become.

Obviously, this lady knows both sides of the story, and still wishes to give it a try. He has not provided enough support to satisfy you, me, or the medical community. But he has, somehow, satisfied her. While I would hate to see her taken advantage of, I do not presume to wish to take away her freedom to control her own body in the name of protecting her from that possibility. She will probably die soon regardless, with or without our “protection”.

Obviously, you and I draw that line in a different place. Why is it that your version of the line is more valid than mine?

-VM

73

Ok, let’s stick with private insurance companies. This would not be on a list of approved treatments, and taking of such a treatment would probably void the contract in the same way that setting your car on fire because you thought it would make it go faster would probably void your car insurance.

The nature of the medical market is that you employ an agent to make decisions on your behalf because you are uninformed. Providers do not fund or sanction treatments like these because they are of the view that the desperate do not make systematically better judgements than the calm uninformed.

74

picmr:

If this lady is dying, I doubt she’s too concerned about losing her insurance. Even if she is, don’t you think that she should have the freedom to choose to lose her insurance? Or do you think that she should be required to keep it?

This all sounds perfectly reasonable to me. Sounds to me like the providers have a strong motivation to fund research into the effectiveness of medical treatments. What do we need to involve the government for?

-VM

75

Well, because the government is the insurer of last resort.

Fortunately of unfortunately, it is not possible for a government to say “this person made a bad call, so be it”. People would get upset at this attitude, and the medically indigent get treatment.

No society can credibly commit to not helping the sick if they have no insurance or if they act recklessly.

picmr

76

picmr:

Note that I don’t think the government should be the insurer of last resort. Since I think this is wrong, it is not going to justify, for me, additional wrong things that occur as a result of it.

What about this:
-Let’s say you think the medically indigent should get treatment.
-I also think the medically indigent should get treatment.
-My brother thinks that the medically indigent should not get treatment.
As a solution, I propose that you and I contribute voluntarily to a fund that provides insurance to the medically indigent. In terms of what treatments it does or does not allow, it is answerable to us. The people that get upset can speak their minds with their dollars. No need for the government to say anything.

-VM

77

Just remember, guys, that in this instance, Jo Ann is not saying that she is completely forbidden from getting Dr. Burzynski’s “treatment”. In fact, Dr. Burzynski has been granted permission to conduct clinical trials of his alkali-soaked Antineoplastons on terminal cancer patients. Her main gripe seemed to be that she can only receive Dr. Burzynski’s treatment if all other, conventional treatments for metastatic breast cancer (i.e. treatments which have been proven effective to some degree in clinical trials) have failed.

78

Smartass said:

I disagree. We need specialists in the area. We can’t just expect some cop and jury of our peers to understand the ins and outs of medical treatment, scientific evidence, etc.

I’m sorry, but bullshit. Anything might cure cancer. Putting that word in there doesn’t change the fraudulent nature of the claim.

Oh, great. If he sells some snake oil and kills some people, the families can sue. Well yippee for them. Aren’t they lucky? It sure would be nice to stop the guy before he can kill them, though, wouldn’t it?

I have seen nothing in any of her posts indicating that she really knows or understands both sides.

Con men “satisfy” people every day. That doesn’t make it right.

Because I’m right, of course! :smiley:

Disclaimer: I want to make it clear that I am not calling the doctor in this specific case a fraud or a con man – the truth is that I don’t know and can’t say either way. I am using comparisons to make points about possibilities of people taking advantage of others.

79

On the other side of the coin, why is the government so determined to protect people from their own stupidity.

I’d say the government and the medical profession has done it’s job. The treatment in question has been clearly debunked for anyone with even a moderate interest in the subject.

How much farther do they need to go to protect people from their own stupidity?

If somebody wants to go to a witch doctor or a snake oil salesmen to cure their cancer after all that’s been said and done to prove why it’s foolhardy, I say let them.

80

**Smartass[/b}:

And others. Did you read the link I posted, which has a long discussion of how others are hurt by such actions?

One obvious one that I’ll bring up is that treatments are essentially never free; if she pays for a useless treatment, she’s given the treater money to expand with.

That’s a tough one. I believe that the vast majority of people (probably including myself) are incapable (for reasons of intelligence and/or knowledge and/or whatever} of making a rational decision about whether a particular treatment is statistically dangerous or efficaceous. When it comes to the decision of whether to apply a treatment to a particular individual, I would like to allow that individual to make the decision … but how do you do that and protect those who want to be protected and detect frauds and detect people who are not intentionally fraudulent but are wrong?

Do you believe that people should be allowed to make their own decisions when it is scientifically provable that those decisions are wrong? How about when it’s scientifically provable that those decisions are dangerous (perhaps even fatal) to those people and damaging to others?

I disagree. Quantity of information is not the major factor. You need both information and the ability and background knowledge to evaluate that information. Doing this for cancer treatments is a full-time job that many people just can’t do; they don’t have the time and/or they just don’t have the native ability. I’m not being elitist; I include myself in that group. I certainly don’t have the time and there’s a good chance I don’t have the ability.

How do you suggest that we prove Dr. SnakeOil has committed fraud?

[/quote]
On the other hand, if he says it might cure cancer, then it is not fraud.
[/quote]

I strongly disagree. If there is no reason to believe that Dr.SnakeOil’s treatment will cure cancer, then I believe that claiming that it might is fraud.

How would you handle the case in which Dr. SnakeOil’s treatment is chorinated flourinated dihydrogen monoxide (i.e. tap water) without the FDA?

Ah, that’s just the thing you want when a family member dies becasue of making a poor choice. How about saving that family member’s life instead? Well, sadly we can’t do that in every case; but we can do it for a large portion of the cases. All we have to do is set up laws that define how to test a treatment scientifically and an agency to enforce that law.

That’s not at all obvious to me; can you provide wuotes taht support your assertion?

What reasons do you have to believe that? Many breast cancers have high cure rates with conventional therapy. I’m certainly not enough of an expert to evaluate her case, althoug I know enough to realize that the fact that she mentioned “metastatic” decreases her chances (assuming she’s correct). Are you enough of an expert to diagnose and prescribe based on the information she’s provided?