[heathergirl67]

I have to admit, it's not my idea. It was someone else's idea that I saw and found intriguing. He suggested this: Not allowing anyone to directly fund research. For example-<br>
Pfizer has a new drug that they want tested. They want to see the effectiveness rates compared to control compared to placebo. So they give the funding that the study would require to Government Program X (GPX). GPX then records the funding and study details. It codes the study as Study #45678 and refers to the drug as Pill XYZ. A separate part of GPX recieves the revised information that contains no indication of its source. It gives the study and its funding to the University of its choice. That way the University has no clue who is funding this study and the results are released with no interference from the funder.<br><br>
Alternate example-<br>
Generation Rescue wants to do a study on the rates of epilepsy in fully vaccinated kids compared to fully unvaccinated kids. They give the funding to GPX. Section 1 of GPX erases all identifying marks of the funder and passes the "cleaned up" version to section 2 of GPX. They distribute the study to the University of their choice. The results are published with no interference from the funder.<br><br>
I thought it had some promise. I don't love the idea of the government getting involved more because their track record is less than perfect, to say the least. But it's a starting point.<br><br>
What do you think of this idea? How would you improve it?

 

[xmasbaby7]

I like it in theory but I fear that the government agency may not be able to remain discreet when pharma has so much money and clout to throw around and poach.<br><br>
I have complete faith in the extreme corruption big pharma is capable of.<br><br>
And I am not even some wacky conspiracy theorist.

 

[Fyrestorm]

No such thing as a gov't agency that is incorruptible.<br><br>
I don't know what the answer is, but another gov't agency or program that can be bought and paid for isn't it.

 

[Pirogi]

It sounds like a really good idea in theory, but then again so does communism. In this scenario, there would be a government database that links the submission details to the final experimental details. And it would be (several) someone's job to manage the database. Also, I would worry about database security.

 

[AllyRae]

Well, of course studies funded from unbiased sources are the best idea. It's more complicated than that though. First, people always have a cause they like to support. People are more likely to send money to the March of Dimes or Autism Speaks or the Susan Komen foundation than they are to send money to "general research fund". People want to support research that is personal to them, and a lot of research depends on organizations that receive citizen donations.<br><br>
And 2, who would regulate what gets funding? As it is now, the "major" well known conditions (autism, breast cancer, etc.) get a lot of funding because there is a lot of interest, citizen pressure/donations, and financial incentive to find "cures". But what about those diseases that aren't as glamourous (for example, I have a bone marrow condition that only a couple thousand people in the country have...it's called an "orphan" disease because it's not of major research interest. All research being done in the area is exclusively funded by patients with the disease or doctors that treat it. It gets very very little federal or pharma money because it isn't a common disease).<br><br>
So, yeah, it's a good idea in theory, but in practice, I think we'd lose a lot of valuable research that is being done on diseases people suffer from but that the general population will never hear about whereas diseases that have created a large propoganda following will get all of the funding from the central organization.

 

[MittensKittens]

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<div>Originally Posted by <strong>Pirogi</strong> <a href="/community/forum/post/15374155"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">It sounds like a really good idea in theory, but then again so does communism. In this scenario, there would be a government database that links the submission details to the final experimental details. And it would be (several) someone's job to manage the database. Also, I would worry about database security.</div>
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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/yeahthat.gif" style="border:0px solid;" title="yeah that">

 

[heathergirl67]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>AllyRae</strong> <a href="/community/forum/post/15374287"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Well, of course studies funded from unbiased sources are the best idea. It's more complicated than that though. First, people always have a cause they like to support. People are more likely to send money to the March of Dimes or Autism Speaks or the Susan Komen foundation than they are to send money to "general research fund". People want to support research that is personal to them, and a lot of research depends on organizations that receive citizen donations.<br><br>
And 2, who would regulate what gets funding? As it is now, the "major" well known conditions (autism, breast cancer, etc.) get a lot of funding because there is a lot of interest, citizen pressure/donations, and financial incentive to find "cures". But what about those diseases that aren't as glamourous (for example, I have a bone marrow condition that only a couple thousand people in the country have...it's called an "orphan" disease because it's not of major research interest. All research being done in the area is exclusively funded by patients with the disease or doctors that treat it. It gets very very little federal or pharma money because it isn't a common disease).<br><br>
So, yeah, it's a good idea in theory, but in practice, I think we'd lose a lot of valuable research that is being done on diseases people suffer from but that the general population will never hear about whereas diseases that have created a large propoganda following will get all of the funding from the central organization.</div>
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With that system it seems like everything would have the same amount of funding as it does now. For example, say someone wants to donate to the breast cancer cause. They would donate their money to the Susan G. Komen organization. Then SGK would donate the money to GPX to fund research of breast cancer.<br><br>
In that sense unpopular causes wouldn't get as much financial support as popular ones, just like today. So it wouldn't be better in that regard, but it wouldn't be worse. It would be the same.

 

[heathergirl67]

I am taken aback by all of the negativity here, to be honest. I've never seen anyone offer up an idea that could get research headed in the right direction. I've offered up several ideas and hypotheticals: What study, under perfectly unbiased conditions, would convince you that vaccines are safe? Wouldn't it be great if there was an independently wealthy couple would fund unbiased scientists to research the safety and efficacy of vaccines? And my most recent idea for a way to maintain funder anonymity. I also asked repeatedly for your ideas. All in an effort to make vaccine research more reliable. I thought that's what we all wanted.<br><br>
But the results of all of these have been overwhelmingly negative. I am just baffled as to why people who take such issue with the integrity of vaccine research are SO disinterested in trying to improve it! I can only come up with two reasons:<br>
1. The bottom line is that they just don't want to vax, no matter what. If reliable studies came out showing vaccines are safe, they still wouldn't vax, but they wouldn't have "I don't trust the science" to hide behind anymore.<br>
2. They have a very defeatist/cynical attitude. As in, Things will never get better, so why bother trying?<br><br>
Please note, I am not pro- all vaccines. There are some that I consider unsafe and unnecessary. And I'm NOT saying that all anti-vaxers must fall into one of these two categories. I just don't know what else to think about people who are so worried about the safety of vaxes but seem so reticent to even entertain the idea of improving things.

 

[mama1803]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>heathergirl67</strong> <a href="/community/forum/post/15375130"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I am taken aback by all of the negativity here, to be honest. I've never seen anyone offer up an idea that could get research headed in the right direction. I've offered up several ideas and hypotheticals: What study, under perfectly unbiased conditions, would convince you that vaccines are safe? Wouldn't it be great if there was an independently wealthy couple would fund unbiased scientists to research the safety and efficacy of vaccines? And my most recent idea for a way to maintain funder anonymity. I also asked repeatedly for your ideas. All in an effort to make vaccine research more reliable. I thought that's what we all wanted.<br><br>
But the results of all of these have been overwhelmingly negative. I am just baffled as to why people who take such issue with the integrity of vaccine research are SO disinterested in trying to improve it! I can only come up with two reasons:<br>
1. The bottom line is that they just don't want to vax, no matter what. If reliable studies came out showing vaccines are safe, they still wouldn't vax, but they wouldn't have "I don't trust the science" to hide behind anymore.<br>
2. They have a very defeatist/cynical attitude. As in, Things will never get better, so why bother trying?<br><br>
Please note, I am not pro- all vaccines. There are some that I consider unsafe and unnecessary. And I'm NOT saying that all anti-vaxers must fall into one of these two categories. I just don't know what else to think about people who are so worried about the safety of vaxes but seem so reticent to even entertain the idea of improving things.</div>
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What baffles me is why others are so interested in the decisions that I make in regards to my own family. Why do you need to think anything or draw conclusions about what other people are worried or not worried about?<br><br>
My dh and I have made the decision not to vax our children and we don't "hide" behind anything. There is no need to hide because we aren't doing anything wrong or shameful. We, as parents, have made a decision and it isn't anyone else's business how or why we came to the decision we did. Even if a study came out and said that a certain vax was safe doesn't mean we'd run out and get it because a vax being safe does not equal said vax being <span style="text-decoration:underline;">necessary</span>.

 

[heathergirl67]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>mama1803</strong> <a href="/community/forum/post/15375200"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">What baffles me is why others are so interested in the decisions that I make in regards to my own family. Why do you need to think anything or draw conclusions about what other people are worried or not worried about?<br><br>
My dh and I have made the decision not to vax our children and we don't "hide" behind anything. There is no need to hide because we aren't doing anything wrong or shameful. We, as parents, have made a decision and it isn't anyone else's business how or why we came to the decision we did. Even if a study came out and said that a certain vax was safe doesn't mean we'd run out and get it because a vax being safe does not equal said vax being <span style="text-decoration:underline;">necessary</span>.</div>
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Who said I was interested in the decisions that you make for your family? I fully appreciate and respect the choices of the women here because I believe that most of them have put a lot of effort into making the right decisions for themselves and their families. I guess I just supposed that you might want to discuss vaccinations because... you know... this is a vaccination discussion board. That's not a crazy assumption, IMO.<br><br>
Also, I'm not demanding that you justify your choices to me. I'm simply curious as to why people who are interested in the safety of vaccines are so reticent to consider ways that could make the study of them more accurate.

 

[Fyrestorm]

Heathergirl,<br><br>
I think on your last thread you got some pretty good ideas...one overwhelming one was getting rid of the vaccine manufacturers sweet deal with immunity for damages.<br><br>
Disallow pharma lobbyists.<br><br>
Stop pharma advertising<br><br>
Stop pharma political contributions<br><br>
After all that is done, we can start to discuss the actual studies - maybe we could start with a long term study choosing several thousand vaccinated kids and several thousand children who have reamines vax free...I would offer my DD up for the unvaxed part of that study.

 

[MittensKittens]

I saw your other thread about studies and study methods too, and I am not disputing that the things you are "proposing" sound sane, and even necessary. Perhaps, one of the things you mentioned might even convince me of the safety of vaccinations. I am just doubting that concepts like long term unbiased studies, and independent, non interest-based research, are going to happen. That's not cynical or defeatist. I've been politically active for more than half my life, and I know how government works. I know things can be changed. I also know it takes an awful long time. It's great that people are thinking about this, but it will be too late for my family to benefit from any such changes, if and when they occur.

 

[heathergirl67]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Fyrestorm</strong> <a href="/community/forum/post/15375269"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Heathergirl,<br><br>
I think on your last thread you got some pretty good ideas...one overwhelming one was getting rid of the vaccine manufacturers sweet deal with immunity for damages.<br><br>
Disallow pharma lobbyists.<br><br>
Stop pharma advertising<br><br>
Stop pharma political contributions<br><br>
After all that is done, we can start to discuss the actual studies - maybe we could start with a long term study choosing several thousand vaccinated kids and several thousand children who have reamines vax free...I would offer my DD up for the unvaxed part of that study.</div>
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I agree, those are excellent starting points. I would like to expand it, though, because it's not just pharmaceutical companies who have a vested interest in the results.

 

[Fyrestorm]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>heathergirl67</strong> <a href="/community/forum/post/15375313"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I agree, those are excellent starting points. I would like to expand it, though, because it's not just pharmaceutical companies who have a vested interest in the results.</div>
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<br>
But they have the most on the line

 

[MittensKittens]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Fyrestorm</strong> <a href="/community/forum/post/15375269"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Stop pharma political contributions</div>
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Do you think that is possible? Who is going to legislate that?

 

[heathergirl67]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Fyrestorm</strong> <a href="/community/forum/post/15375334"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">But they have the most on the line</div>
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I would argue that organizations such as Generation Rescue have a lot on the line, too.

 

[Fyrestorm]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>heathergirl67</strong> <a href="/community/forum/post/15375346"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I would argue that organizations such as Generation Rescue have a lot on the line, too.</div>
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Since pharma is not immune to law suits on their other drugs, they are beginning to rely on vaccines to be their big money makers. There are something like 200 new vaccines in the pipeline that will easily get pushed through the FDA and added to schedule - all with complete immunity. The HPV vaccines are several hundreds of dollars per series (how many children between the ages of 9 and 19 are there out there for them to stick?) That adds up to a whole lot of money on just one vaccine...Operation Rescue (or any other organization) is not on the line for that kind of cash...no where near. Operation Rescue also has a lot to gain if studies were allowed out that proved that neurotoxic chemicals actually cause neurological damage - but only if big pharma looses their free ride

 

[ammiga]

For me, the reason that I don't play the game of "what do you think of this idea" is not because I'm a negative and not because I am afraid of losing some wall to hide behind. It's because I don't think any of them are likely to happen, and that's just being realistic. Once you really get to know how and why these tests are conducted, funded, concluded, and published, there is way too much going on here to sift through and fix it.<br><br>
It simply isn't fun for me to come up with all the things that need to be fixed to make vax studies something that I could buy into. It is frustrating and sad. Now, if you were someone that actually was starting this sort of study with the funds and connections to back it up, and you were looking for how to get started, you would probably be met with much more helpful answers<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">. Most of us are just so saddened by the state of these things that when suggestions are brought up hypothetically, it's pretty easy to see where they fall short in the real world.

 

[xmasbaby7]

I have lobbied my legislators in DC about supporting the bill to fund a study to compare vaccinated and unvaccinated children; even though I am still cynical that the study will be unbiased enough, I see this as a practical, feasible first step.<br><br>
Are you in a position personally to implement any of these changes you are putting so much energy into?<br><br>
Comparing Generation Rescue's interests to Big Pharma's however strikes me as quite naive. From a political clout perspective, talk about David and Goliath to the greatest exponential factor. Generation Rescue has press visibility as an asset to generate popular interest, but that doesn't convert into legislative power AT ALL.<br><br>
But even their media asset is always sensationalized by low brow media, like US Weekly type mags, and network coverage is there to counter anything said with a CDC press release.<br><br>
I don't call it a fair fight with the same stakes at all. A single 501c(3) organization up against the most affluent global corporations?

 

[heathergirl67]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>xmasbaby7</strong> <a href="/community/forum/post/15377878"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I have lobbied my legislators in DC about supporting the bill to fund a study to compare vaccinated and unvaccinated children; even though I am still cynical that the study will be unbiased enough, I see this as a practical, feasible first step.<br><br>
Are you in a position personally to implement any of these changes you are putting so much energy into?<br><br>
Comparing Generation Rescue's interests to Big Pharma's however strikes me as quite naive. From a political clout perspective, talk about David and Goliath to the greatest exponential factor. Generation Rescue has press visibility as an asset to generate popular interest, but that doesn't convert into legislative power AT ALL.<br><br>
But even their media asset is always sensationalized by low brow media, like US Weekly type mags, and network coverage is there to counter anything said with a CDC press release.<br><br>
I don't call it a fair fight with the same stakes at all. A single 501c(3) organization up against the most affluent global corporations?</div>
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I wasn't comparing their political clout or financial stockpile. I was just trying to point out that pharmaceutical companies aren't the only ones with a vested interest in study results going their way.