Do they over prescribe pain medication and depression drugs
Do they over diagnose things like ADD?
How good was the securities and exchange commission? Is the FDA and mainstream medicine any worse?
There was much talk about Bernie Madoff, but he was not the only thing wrong with the financial system, nor is the example I gave about the CNN documentary the only issue facing mainstream medicine.
You can read up on this if you like, Art Caplan a well known bio ethicist has written many articles showing mainstream medicine having some snake oil
What does this have to do with the FDA other than make people think that the FDA is evil in being involved in all of these things. Heck, if you read this you'd think that the FDA was responsible for the Great Recession after Bob threw in the Securities and Exchange Commission.
Yes, there are real problems with the FDA, especially in terms of how slow they are, but this has nothing to do with over prescribing for cancer and over diagnosing ADD, and adding these things to the discussion isn't fair and clouds the problem and therefore the possible solution.
Do we need an FDA? Yes. Does the FDA need reform? Yes.
Is there a way that it can be reformed? Yes. Every government body has the possibility to be reformed. Will it be difficult? Yes. But as per my post (http://inspiredsciforum.com/post/10465) the FDA itself was asking for comment in regards to Creating an Alternative Approval Pathway for Certain Drugs Intended to Address Unmet Medical Need; Public Hearing You can see the notice here.
These kinds of proceeding as well as talking about the problems (kept in perspective) is the way to actually try to affect change in the FDA. If we just take the position that we cannot change it, we'll end up accomplishing very little.
Don't get me wrong, these conversations are important, but if we don't do anything with the conversation it just gives people, especially new people that unfortunately grows everyday, the idea that nothing can be done.
So let's keep the conversation in perspective and discuss some solutions to this problem as well as trying to keep on topic so that we don't compound the problem and make tackling it even more difficult.
Thanks Dennis, but I think you miss the point here. I know in your heart you are trying your best to help cure efforts. But without setting a high standard all efforts won't get us more than something like methylprednisolone or ampyra. And having monies designated for cure research doesn't mean they will pay for good research. We need to be vigilant and not fight with each other.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
To be honest guys i think this thread is in danger of going round in circles now. It has highlighted some interesting points and created worthy discussion. bob i think stemcellsnatombomb may have a very good reason for not being able to reply as yet and will have to respect that. It seems, after all that everyone is promoting SCI research in their own way and that is to be applauded.
Thankyou to all who have participated in this discussion and thankyou for keeping it civil
I think it's best if members create their own topic for posting whatever they want. That way we can have multiple discussions going without the need to complicate/derail existing threads
Thankyou paolo for the reply Ive spent some time this morning reading some of the information on the links you have provided and im getting a clearer picture! Indeed it seems that the opportunity for monies that are intended for their given purpose can be 'diverted' to 'other' sources. This is such a waste and a shame
I started to read through the New Jersey guidelines for research programs and was interested in their funding priorities. The first point was clearly defined:
Studying strategies to promote neuronal growth and survival, encourage the formation of synapses, enhance appropriate myelination, restore axonal conduction, replace injured cells, or otherwise improve function after spinal cord injury.
This above statement, to me in my understanding is a very clear definition of 'cure research', in a broad sense and i appreciate that this would have to be translated into areas of research that promoted this and be broken down into various studies that hold a hypothesis are working towards this aim.
Then as i read through further points i can see how they diversify into other areas eg: associated conditions to Spinal Cord Injury and Supporting the investigation of promising new approaches.
I compared this then to the guidelines Wings for Life Spinal Cord Research Foundation. It does seem that their guidelines would be less open to monies being improperly diverted. I read through one of the grant applications and did notice that the criteria for funding is not specific to a 'cure'
I can see how the small percentages you state are in fact as low as you say...and indeed something needs to change.
In the case of Wings For Life I should have pointed you first to "Key Areas of Research" www.wingsforlife.com/en/research/#key-areas That gives a general idea of how money are spent. Then the guide lines this year have been improved a bit since it has been added that: "another preference is given to projects which focus also on chronic spinal cord injury" www.wingsforlife.com/fileadmin/user_upload/downloads/2013_Guidelines_Project_Grant_09.pdf This change has been the result of a discussion me and others have had with WFL people for few years. One very disturbing thing is that we all have chronic SCI while SCI research is mostly acute oriented. That is even more disturbing if you think of all the people with chronic SCI that work to raise money that, even when they actually end up in cure research, go to acute cure research that will never benefit us. Than there is still the issue of sloppy scienze...
So the situation is depressing... but the fact that we could make happen a little change gives me hope that we can make bigger changes happen.
Hmmm its becoming clearer to me now too. What can be done to change this paolo? You mentioned the AIDS movement,I am presuming that money that was donated was used specifically for its purpose in researching a cure and money as not spent elsewhere, where it shouldnt have been?
I am going to start a thread about what we can learn from the AIDS movement, they have changed medical research at all levels to get an effective therapy ASAP. Their problem now is that the present situation for AIDS is very convenient for big pharma, actually it would be counter productive for big pharma to eradicate AIDS while at the time of the AIDS movement the big pharma companies were very actively investing (together with the NIH etc.) to develop the current effective therapy they make lots of money from.
To track how donated money are spent it's a big job and needs to be done. Sometimes to look at finantial reports it's enough to detect problems, but in many cases you need also to understand scienze rather well to see what's wrong. Here to have an honest scientists on our side it's essential. AIDS people had some researchers helping them.
Just a suggestion in question form to find out if he wants to make it one of his campaigns
Dear Bob,
I would like to respond to your 'suggestion' about a campaign around the NJ fund and why I've not done, and won't do, a campaign around it at the present time. It's not about right or wrong, just or unjust, or even whether I want to or don't want to. Also, Dr. Wise Young has never threatened or harassed me about it. So please read on.
So let me explain why I haven't tried to organise any action in NJ even though I still think some kind of community action is necessary. I agree that it is true that not enough is going to chronic cure, and that has become even less in the recent past. I don't make this claim willy nilly as I went through all their spending over the last ten or so years and came to this conclusion. I believe that just like some other 'cure paralysis' funds, this slogan is used to sell it to the community, legislators, and voters, and then a lot of work is done studying non-chronic-cure issues (which is also in their mandate along with care and chronics). Let's face it, 'cure paralysis' means getting you and me out of our chairs to the ordinary Joe and they think it's a good thing.
But still, the point of any campaign is not to kill the fund, and keeping in mind that their mandate is not only cure, the goal is to win more, not all, of this money over to chronic cure. This is what shapes the campaigns I do. I'll even go one step further and tell you that if they were ever in danger of losing the money I would try to help them keep the money by offering critical support while pointing out that by not using more money for chronics they face the real danger of losing funds as there is nothing to grab the imaginations of the public and voters or people may even think that regardless of all the money, paralysis is impossible to cure so why through good money after bad.
In my opinion, it's easier to have money that already exists spent on chronics than it is to win brand new money. I'm not the police and I do just 'go after' groups that don't do exactly as I think they should.
Stating this, I think that in NJ the first step in any future campaign should be to try to get NJ people involved. Without people on the ground in these government funded and controlled programmes, petitions, etc., do not work and only tend to pit the community against itself, pin an anti-care label on us, and is ineffective. So why do it? I don't find simple expressions of discontent or anger to be worthwhile.
What did I want to do it NJ? You'll see from my postings on CC that I think it's important to win over those already involved and to this end I approached those people. I had hoped that we could get wording in some of the research calls for exclusive chronic projects similar to what Wings for Life does in some projects. This would have required no change in the law and the fund could still have continued to fund other mandated research items. In the end, I was turned down by these people. In the future we may have the chance again, but at this point I think it's not going to work and I've moved on to other projects. I based this decision by talking with those who have helped in past campaigns and whose opinions I trust.
So why did I get involved supporting Roman Reed in California and the Minnesota folks? Because I reached out to those on the ground and built a relationship of trust. The last thing I want to do is screw up the efforts of those doing the bulk of the work, so I didn't just move in and set up a petition as this would have been counterproductive and may have hurt their efforts more than helped if this is not what they were looking for.
So what's the difference between governmental controlled funds and foundations like Rick Hansen (RH) and Christopher and Dana Reeve (CDR)? Very simple, these are two orgs with international appeal and based very much on the fighting spirit of their founders. Of course the bulk of their money comes from their own governments, but that money is reliant on their reputation as cure fighters. When that is challenged, concessions can be won. I think we've seen that with RH and just a little with CDR (granted I have only ever done one campaign to CDR). I also knew from talking with others (I spend A LOT of my time discussing with others) that they believed there was widespread support in the community to be able to run a campaign that wouldn't explode in our faces.
But even with these foundations, we need to build on those concessions and organise real groups in those countries who can deal with winning more for chronic cure. You'll see that I'm working on organising such a group in Canada.
So in the end, I'll just recap.
I am not the police looking for diversion of funds etc. My role is not to stamp out injustice and tilt at windmills in the SCI world. I work on campaigns that I think have an impact. Building links with those already on the ground and offering support is necessary, and helping to build those groups for the future is one of the biggest goals. Getting more members of the community involved requires that the campaigns have some efficacy so doing things that we know are doomed to failure tend to turn people off. Winning money for chronic cure is the goal and blowing off steam or expressing anger unnecessarily is useless.
I'm sorry for the length of this post, but since Bob wanted an answer, I gave it, and as you can see the reason for not doing a 'campaign' in NJ is not just a simple answer (also one of the reasons why it took so long).
Bob, I will leave you with this.
You can do any campaign in whatever manner you wish anytime you want, so I'd like to know why, if you disagree with my inaction, you don’t just do it on your own. The blog and google forms are free.
Dennis Tesolat
www.StemCellsandAtomBombs.org ______________
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
Martin Luther King
I would like to respond to your 'suggestion' about a campaign around the NJ fund and why I've not done, and won't do, a campaign around it at the present time. It's not about right or wrong, just or unjust, or even whether I want to or don't want to. Also, Dr. Wise Young has never threatened or harassed me about it. So please read on.
It's pretty clear to me how Wise feels about exposing him "The thing that makes me shake my head in bewilderment is the fact that without Dr. Young and this great website he founded, some of the 501(c)3 foundations that were formed because they used this website as a springboard, would not exsit and yet they sometimes seem to be the ones to instigate the whispers here and there that Dr. Young is some how off the mark and he needs to be reeled in and brought to instant justice with embarrassing posts on the very forum he dedicated his life too!!" As said by his administrator Jim
So let me explain why I haven't tried to organise any action in NJ even though I still think some kind of community action is necessary. I agree that it is true that not enough is going to chronic cure, and that has become even less in the recent past. I don't make this claim willy nilly as I went through all their spending over the last ten or so years and came to this conclusion. I believe that just like some other 'cure paralysis' funds, this slogan is used to sell it to the community, legislators, and voters, and then a lot of work is done studying non-chronic-cure issues (which is also in their mandate along with care and chronics). Let's face it, 'cure paralysis' means getting you and me out of our chairs to the ordinary Joe and they think it's a good thing. So you do realize the funds aren't appropriated in a manner more beneficial to a cure
But still, the point of any campaign is not to kill the fund, and keeping in mind that their mandate is not only cure, the goal is to win more, not all, of this money over to chronic cure. This is what shapes the campaigns I do. I'll even go one step further and tell you that if they were ever in danger of losing the money I would try to help them keep the money by offering critical support while pointing out that by not using more money for chronics they face the real danger of losing funds as there is nothing to grab the imaginations of the public and voters or people may even think that regardless of all the money, paralysis is impossible to cure so why through good money after bad.
In my opinion, it's easier to have money that already exists spent on chronics than it is to win brand new money. I'm not the police and I do just 'go after' groups that don't do exactly as I think they should.
Stating this, I think that in NJ the first step in any future campaign should be to try to get NJ people involved. Without people on the ground in these government funded and controlled programmes, petitions, etc., do not work and only tend to pit the community against itself, pin an anti-care label on us, and is ineffective. So why do it? I don't find simple expressions of discontent or anger to be worthwhile. I am having trouble understanding you on this one as with all your campaign you didn't rely on only local support, I also feel when it came to Rick Hansen you were ready to have his head
What did I want to do it NJ? You'll see from my postings on CC that I think it's important to win over those already involved and to this end I approached those people. I had hoped that we could get wording in some of the research calls for exclusive chronic projects similar to what Wings for Life does in some projects. This would have required no change in the law and the fund could still have continued to fund other mandated research items. In the end, I was turned down by these people. In the future we may have the chance again, but at this point I think it's not going to work and I've moved on to other projects. I based this decision by talking with those who have helped in past campaigns and whose opinions I trust.
Are you aware the civilian board member on the NJ Comm for spinal cord injury is a supporter and friend of Dr. Young and has supplied food at some of Young's events?
So why did I get involved supporting Roman Reed in California and the Minnesota folks? Because I reached out to those on the ground and built a relationship of trust. The last thing I want to do is screw up the efforts of those doing the bulk of the work, so I didn't just move in and set up a petition as this would have been counterproductive and may have hurt their efforts more than helped if this is not what they were looking for.
So what's the difference between governmental controlled funds and foundations like Rick Hansen (RH) and Christopher and Dana Reeve (CDR)? Very simple, these are two orgs with international appeal and based very much on the fighting spirit of their founders. Of course the bulk of their money comes from their own governments, but that money is reliant on their reputation as cure fighters. When that is challenged, concessions can be won. I think we've seen that with RH and just a little with CDR (granted I have only ever done one campaign to CDR). I also knew from talking with others (I spend A LOT of my time discussing with others) that they believed there was widespread support in the community to be able to run a campaign that wouldn't explode in our faces. The difference is simple, you must try to correct the fault, whereas Roman Reed wasn't the fault, but the government was. With CDRF and RHF they were the fault and not the government. BTW your campaign against CDRF was that they made claims of curing people to get them out of their wheelchairs, and yet you left Wise alone with his claims of people walking with minimal assistance and that he regenerated the spinal cord. Perhaps because you post frequently on CareCure you heeded Jim's warning.
But even with these foundations, we need to build on those concessions and organise real groups in those countries who can deal with winning more for chronic cure. You'll see that I'm working on organising such a group in Canada.
So in the end, I'll just recap.
I am not the police looking for diversion of funds etc. My role is not to stamp out injustice and tilt at windmills in the SCI world. I work on campaigns that I think have an impact. Building links with those already on the ground and offering support is necessary, and helping to build those groups for the future is one of the biggest goals. Getting more members of the community involved requires that the campaigns have some efficacy so doing things that we know are doomed to failure tend to turn people off. Winning money for chronic cure is the goal and blowing off steam or expressing anger unnecessarily is useless.
I'm sorry for the length of this post, but since Bob wanted an answer, I gave it, and as you can see the reason for not doing a 'campaign' in NJ is not just a simple answer (also one of the reasons why it took so long). Don't Pass the buck
Bob, I will leave you with this.
You can do any campaign in whatever manner you wish anytime you want, so I'd like to know why, if you disagree with my inaction, you don’t just do it on your own. The blog and google forms are free.That's the problem "If you don't like what I'm doing than do it yourself" We should try to work together like the Aids Groups did.
I think a good example to clarify my point is to look at the New Jersey Commission on Spinal Cord Research: www.state.nj.us/health/spinalcord/index.shtml The commission was created after the effort of people with chronic SCI that wanted a cure. Almost 15 years later about 40 millions $ have been spent and about 10% has gone to cure research and less than 5% has gone to chronic SCI cure research (chronic phase of a spinal cord injury—a few months later when the person's condition has stabilized). If you have time you can see all the research projects that have been supported (in most cases even a non educated person can easily detect research that has nothing to do with cure): www.state.nj.us/health/spinalcord/directories.shtml
When I first looked into this I thought it was "too bad to be true", but it is true... and this NJ commission is just one example.
The point DJ is if not even elected officials can be trusted let's not over trust some researchers especially the ones that brag and exaggerate and boast and tell heartwarming stories and have no science
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
The point DJ is if not even elected officials can be trusted let's not over trust some researchers especially the ones that brag and exaggerate and boast and tell heartwarming stories and have no science
What does this have to do with the FDA other than make people think that the FDA is evil in being involved in all of these things. Heck, if you read this you'd think that the FDA was responsible for the Great Recession after Bob threw in the Securities and Exchange Commission.
Yes, there are real problems with the FDA, especially in terms of how slow they are, but this has nothing to do with over prescribing for cancer and over diagnosing ADD, and adding these things to the discussion isn't fair and clouds the problem and therefore the possible solution.
Do we need an FDA? Yes. Does the FDA need reform? Yes.
Is there a way that it can be reformed? Yes. Every government body has the possibility to be reformed. Will it be difficult? Yes. But as per my post (http://inspiredsciforum.com/post/10465) the FDA itself was asking for comment in regards to Creating an Alternative Approval Pathway for Certain Drugs Intended to Address Unmet Medical Need; Public Hearing You can see the notice here.
These kinds of proceeding as well as talking about the problems (kept in perspective) is the way to actually try to affect change in the FDA. If we just take the position that we cannot change it, we'll end up accomplishing very little.
Don't get me wrong, these conversations are important, but if we don't do anything with the conversation it just gives people, especially new people that unfortunately grows everyday, the idea that nothing can be done.
So let's keep the conversation in perspective and discuss some solutions to this problem as well as trying to keep on topic so that we don't compound the problem and make tackling it even more difficult.
FDA’s new “breakthrough therapy” designation was the talk of the town in 2013. At the beginning of the year everyone wondered what on earth it meant and by the end of the year everyone wanted to have one—and it seemed most of them did, with 34 granted, far exceeding anyone’s expectations, including FDA’s. Setting aside the question of where all these breakthroughs have been hiding until now, the question for 2014 will be, can FDA continue to support this “high-touch” approach for all these reviews, especially with continuing strains on its budget? Having mandated this program in FDASIA, will Congress pour the money on?
Additional Information on progress at the FDA with FDASIA can be found HERE.
"The FORE—SCI replication program was established by NINDS after extensive discussions among the spinal cord injury (SCI) research community of two perceived problems.
The Fore-SCI replication program ran out of money and has not been reinstated with funds as of now. Budgets cuts with sequestration has really hurt progress. The SCI field has felt the pinch in a big way so we no longer have NINDS replication labs funded by the NIH. They're gone.