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Old 09-19-2010, 08:56 PM   #21
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My mom has a disease which is still not very well understood and also doesn't have developed therapies for cure or treatment. Fortunately in this case it is not as fatal as cancer, but it is still progressive and ultimately terminal. As a result, she has had a keen personal interest in this kind of thing.

In the end, she does what is best for her own survival first, and then if she can help out future "diagnosees" by being in a clinical trial, then she'll consider it. In her case the nearest clinical trials may be in the next state over, and require traveling there every few weeks for the trial. She considers that hassle, plus the likelihood that the drug or therapy will be promising, plus how her current therapies are working, plus the probability of getting assigned to the control group, and then makes up her own mind after consultation with my dad and her doctor. I think the score at the moment is that she's on three different therapies, has been turned down for one clinical trial, and has turned down another. I think she's still looking a little bit, because even with the three therapies she's still going slowly downhill. Oh, and that's another thing -- how much of your remaining life do you want to spend doing research on various clinical trials to see if there's something there for you, as opposed to just living your remaining time out the way you want to?

Tough questions...

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Old 09-19-2010, 10:08 PM   #22
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The other side of this is someone who dies sooner than they would have if they had not taken something...

I have a friend who's wife had scleroderma.... I do not know much about this illness, but I did not think it was fatal.... I was surprised that she died... later I had heard that she had died because of an adverse reaction to some 'experimental drug'.... I have never asked my friend what really happened and do not plan to do so.... but she died suddenly while she was in the hospital... so the news from others can be true....
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Old 09-20-2010, 12:50 AM   #23
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It's all an interesting conundrum. My story is almost a novel, unbelievable but true.

Latest story:
I have a sibling with PPMS. When Zamboni's treatment became the rage my DS(ister) pressed sibling to get it. While not without resources, he was a bit wary. His symptoms also included a bit of what his DW describes as "brain fog". They were also suffering a bit of a cash flow problem due the disease forcing him to move to a single story house (bought and old one not sold) as well as rent his farm (as opposed to operating it). It didn't seem immediately possible until the rest of us (siblings) gave them a cheque. I contributed since: it wasn't a lot of money, with PPMS you NEVER get better (if the procedure helps, the sooner the better). He had the procedure. I really didn't notice a lot of difference. His DW did. Then, in her eyes, he went down hill to about the starting point. Based on this, I'm a sceptic. However I have heard many anecdotal stories that rival the miracles of Lourdes. I remain sceptical.

Older story:
My DF died many years ago of a neurolical disease that kills about 1 in a million people. For those who die (and their family) it is a life shattering event. For society, it means squat. There will never be any research into causes and cures of this disease since it affects so few people. I fully understand this.

My post upthread does not suggest that clinical trials are wrong, imoral or anything else. I do suggest that any theory that that contradicts current medical thinking (whether that thinking is based on any facts) will get no research, no trials and no chance. After all, like AGW, the science is "settled", before the trials unless "big pharma" or someone else is ready to fund it.
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Old 09-20-2010, 08:31 AM   #24
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It's all an interesting conundrum. ...

My post upthread does not suggest that clinical trials are wrong, immoral or anything else. I do suggest that any theory that that contradicts current medical thinking (whether that thinking is based on any facts) will get no research, no trials and no chance. .... unless "big pharma" or someone else is ready to fund it.
It is an interesting conundrum. Since the trials do cost a lot of money, it's clear that any business is not going to pursue the research and a trial unless they have a reasonable chance to recoup their investment and go on to make a profit. I don't think they should be demonized for this any more than most of us worked most of our hours at a job the pays a salary over doing mostly pro-bono volunteer work.

So you are correct, the 1 in a million (orphan diseases) are not likely to get attention from business. This is an area where we might want the government to step in a supply/fund the research. But we want our government to be reasonably cost efficient also - does it make sense to spend big bucks on 1 in a million issues, when there are unfunded issues affecting a much larger population?

There is probably some middle ground (and maybe some of this is also in place?). Are trials less restrictive for orphan diseases? Maybe the government could provide some kind of incentive to shift research away from the profitable areas where we have effective medicine, to th less profitable ones that would provide more total 'quality of life' overall?

Although I'm generally a capitalist & free market proponent, one area that I think our government might be able to some good for us: fund research for potentially very low cost medications and processes. Businesses have little interest in discovering non-patentable or very cheap products - they won't get their money back. But the govt does not have this need, and if the overall benefit was positive to citizens, it could be a good use of taxpayer funds. A different kind of 'profit' (reduced spending).

-ERD50
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Old 09-20-2010, 08:26 PM   #25
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So you are correct, the 1 in a million (orphan diseases) are not likely to get attention from business. This is an area where we might want the government to step in a supply/fund the research. But we want our government to be reasonably cost efficient also - does it make sense to spend big bucks on 1 in a million issues, when there are unfunded issues affecting a much larger population?
That's why it's so frustrating to the MS community in Canada that CIHR (the Canadian Institutes of Health Research), which is the equivalent of NIH in the US, is not funding the studies. The Federal Minister of Health had an advisory panel of experts look at the issue, and they advised her that there is insufficient scientific justification to do a good study at this time. CIHR rejects about 83% of the grant proposals submitted to it (including some of mine) because it has very high scientific expectations, and many well designed studies don't get funded. Maybe Rich can comment on the NIH.

Interestingly, several ministers of health in Canadian provinces have pledged to support studies, including a follow up study of patients who have had the treatment. They are under a lot of pressure from lobby groups.
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Old 09-30-2010, 01:02 AM   #26
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Interestingly, several ministers of health in Canadian provinces have pledged to support studies, including a follow up study of patients who have had the treatment. They are under a lot of pressure from lobby groups.
Nothing I'd like to see more. DB is in Europe now getting "follow up treatment" for his MS. Apparently (according to the docs there) they should have used stents instead of whateverplasty.
Let's do some studies. If it works, great. It's probably better and cheaper than today's treatment.
If it doesn't (SH!T HAPPENS), it will save a lot of patients a lot of money and heartache.
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Old 10-07-2010, 09:54 AM   #27
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It's bad journalism, not bad science. Participation in a clinical trial is voluntary. Patients are informed they might get the trial drug. I hope I never find myself in the position where my last hope is a clinical trial. But if it is, I will volunteer.

There are two types of people in the world. Ones who look victims and ones who look for the greater good. Clinical trials do not have victims.
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Old 10-07-2010, 09:59 AM   #28
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. Clinical trials do not have victims.
If you will limit this to "ethically conducted" clinical trials, no problem. I've seen a few that would "turn the hair on a bald head".
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Old 10-07-2010, 10:48 AM   #29
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It's bad journalism, not bad science. Participation in a clinical trial is voluntary. Patients are informed they might get the trial drug. I hope I never find myself in the position where my last hope is a clinical trial. But if it is, I will volunteer.

There are two types of people in the world. Ones who look victims and ones who look for the greater good. Clinical trials do not have victims.
I agree with all but your last sentence. Some trial treatments have serious or fatal side-effects -- rare but not negligible. The greater good is compelling argument for supporting ongoing research, unless you are the one who is struck by one of those uncommon outcomes.
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Old 10-07-2010, 12:25 PM   #30
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Thought you might be interested in the take on this article from some colorectal cancer patients here: The Colon Club • View topic - ethics of clinical trials including me (I had rectal cancer 5 years ago -- probably cured).
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