Author Topic: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding ?!  (Read 30206 times)

kindandcaring

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Hi Everyone,

I had to share this...
I found from the Sjogren's World links page..that in 2002 a Vaccine for Sjogren's had been developed...very promising except I asked myself what happened to it !
Well I persevered and contacted the sick kids organisation.

I received an email today telling me although promising ..the project for a Sjogren's Vaccine has been shelved at this time ....due to the lack of funding.

A travesty ?! ...Im sure most would agree if this is true...for our kids sakes especially..

Heres the link to the original press release re: Sjogren's  Vaccine
http://www.sickkids.ca/mediaroom/custom/Sjogrensyndrome.asp

« Last Edit: August 22, 2008, 12:41:14 AM by kindandcaring »

lynnmarie219

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #1 on: August 06, 2008, 07:38:41 PM »
Hi K and C,


Yes this is a travesty.....I wonder why this is the first I have heard of this.

Thanks for bringing it to our attention.....maybe with more time the project will get the funding it needs as sjogrens is becoming much more widely known today than it was years ago. We can only hope and encourage the people who have the power to promote and fund this type of research to keep up the work that was started years ago!

kathylee

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #2 on: August 06, 2008, 10:05:49 PM »
Unbelievable.   Actually I guess it is believable is the sad truth.

Kathlee

kindandcaring

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #3 on: August 07, 2008, 03:56:04 AM »
Yeah I don't know what the go is...Im concerned that if a potentially disease stopping answer has been found specifically for our disease why we would let it slip without checking it out first..as you say Lynn Sjogrens is (albeit) slowly gaining recognition as is the words 'Autoimmune Disease' ..so it seems even more wrong that money is not being found to allow this answer to be developed.

Why is money being put into research ..when we are not developing the answers that we already have..

A Vaccine is a proactive cure...in effect families prone to Autoimmune Diseases could be Vaccinated for Sjogrens..in effect eliminating the disease..(at least the hope)

why would you not pursue this .!

The Sjogrens AI Charities that have money and spend it on Research..perhaps they are not aware..


Sorry to sound a bit angry...guess I am a bit.


Its probably true to say that Pharma's are not going to be interested in a preventative cure...also the same problem that the Faustman TB Vaccine is facing..where it is totally privately funded...and is probably why a Sjogrens specific Vaccine didn't get enough money..as not enough numbers and rich enough people who are concerned about Sjogrens to be able to fund it...all my assumptions but Im scared Im right.

At least we know what happened..I hope it A) Does not happen again and B) As Lynn says..it will be re-funded once more...in the meantime I shudder to think of how many more people will contract this disease and suffer...when just perhaps a Vaccine (by now developed) could have prevented it.





« Last Edit: August 07, 2008, 04:07:37 AM by kindandcaring »

Linda196

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #4 on: August 07, 2008, 04:17:57 AM »
Unfortunately this is one of the victims of medical funding in a country where the bulk of funding goes to providing free medical care...the money for research has to come from outside the system, and drug companies are the first resource, charitible donations are the second. Drug companies aren't favourable to funding research into expensive projects that don't offer high return, and the return on a one time vaccine for a disease that they had trouble finding 100 people to include in a study just doesn't spell profit.

I was involved in our hospital's research department in 2002 when Dr Bookman was recruiting for this study, and from a patient database of over 300,000, we didn't have any who met the study criteria. If it had occurred 2 years later, I would have qualified!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

kindandcaring

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #5 on: August 07, 2008, 04:45:24 AM »
Wow linda

Thanks for sharing your info and thoughts...

So two things are major stumbling blocks....one obvious is as you detailed ..funding..and the other the process.

Gotta be a better way/s

or the relatively small number of people diseases are going to struggle always to get their rightful cure.

What  can we do ....collaborate in funding efforts maybe..rallying the charities to the cause..focusing on developing the potential answers already known instead of funding more research ?!

..but we cant change the process to make it easier..thats beyond but the powers that be. ?!

Though..perhaps if they change the way trials are accessible with the accessibility to the billions via the internet may provide the patient access for trials such as these...it is at the moment all disjointed..this is a human world wide problem..

Having potential Vaccines sitting on the shelf makes one sit uneasy.




Linda196

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #6 on: August 07, 2008, 06:14:23 AM »
One thing your have to take into consideration is that, in order to qualify for studies, potential people need to meet much more stringent criteria than just being diagnosed with a disease...they have to meet basically all of the diagnostic criteria, and have no other conditions that may simulate the disease being studied, because the results must be specific to the main disease. That means that sero-negative, and often secondary SjS patients, are disqualified. This really narrows the potential source of enrollees.

When you take a diagnostically small group to start with, and remove everyone who isn't textbook, with no factors that muddy the waters, you don't have many left. When I think about it, I wouldn't have qualified for that particular study, because of a pre-existing DX of Sarcoidosis.

I've been involved in medical research from both sides, as a subject and a researcher, and it's an involved, complicated, redundant, repetitive,  microscopically detailed and expensive endeavour. One study I considered actually was willing to pay me $50 to participate...all I had to do was provide my own transportation to California (from New Brunswick, Canada) three times a year and pay for accommodations for four days each visit! Guess what, I didn't enroll! I was a participant in one of Dr Bookman's studies many years ago, but it was primarily statistical, didn't do much for discovering new treatments for Sarcoidosis.

One factor in the SjS vaccine that might be able to bring it back to the forefront is the potential application to Type 1 diabetes, but again, you're dealing with a possible single dose to prevent a disease that provides drug manufacturers with a ready made permanent customer base. I don't mean to paint the manufacturers as heartless money grabbers, but their main reason for being is profit...its business after all. Most of the advances in modern medicine have been financed by drug manufacturers, for the improvement of quality of life for millions of people.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

kindandcaring

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Re: Travesty - Promising Vaccine is dumped - Lack of Funding
« Reply #7 on: August 08, 2008, 12:48:59 AM »
Linda
Yeah I agree with all what you said.
Relaxing the stringent requirements for trials may help..that requires a new process way of thinking...perhaps globally enlisting participants is a quicker way..just need s to be successfully organised and coordinated..

There is always a better way.






 
« Last Edit: August 08, 2008, 01:39:40 AM by kindandcaring »

Epson

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #8 on: August 08, 2008, 05:27:35 PM »
This is called "market driven economy" remember, there are only 4 million people in the U.S with Sjogren's and drug companies aren't in the business of being nice to people.  Most drug companies are publicly owned.  A publicly owned corporations first duty is provide added value to the stockholders.

It's nothing personal against Sjoggies, just not good business to find a cure for such a small demographic.
That's why drug companies spend less on research then they spend on dividends to stock holders, stock buy backs and maybe even advertising, first duty is to the shareholders.

If Mike was still with us he could probably tell you how much uncle Sam spends on drug research, it's a lot.  Besides, if there was a vaccine, everyone would be complaining about having to driving to Canada to get it, because it cost too much in the states and it's not covered by your insurance company.

Face it, you can't win, your a Sjoggie. 

irish

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #9 on: August 08, 2008, 05:46:24 PM »
The one thing that I have noticed is that the number of people said to have sjogrens in US is 4 million and that number has not changed over the years. I think the big reason for this is that there are so many more people than this who are affected but are not diagnosed because it is taking so long for the doctors to get educated enough about this disease.

This is a disease that was only first identified in the 1950's and the dry eye, mouth, etc were the main symptoms. So many of the medical schools have not updated their information and education about this disease.Remember that the new docs coming out of school as only as good as the old docs who are training them. It will take a long time for this to catch up in the medical establishment.

The good news is that so many of us as patients have had to be diligent and aggressive to get diagnosed so we are taking an active part in spreading the news and educating the doctors. In the past 2 years there has been a significant increase of "newbies" on this site which tells me that more people are getting diagnosed. When enough people are diagnosed and there are more articles in the magazines and on TV, newspapers, etc plus enought lives and businesses are interfered with  they will discover that "yes" this is a significant disease that needs attention. The drug companies are going to have to figure out a way to do the studies that are more precise. This will come along as the doctors develop more information about this disease that is oh so much more than just dry eye, dry mouth. We are living in the very early days of identifying this disease and I think we will be seeing a lot more info over the years. About time Too!!! Irish ;D

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #10 on: August 08, 2008, 06:39:39 PM »
Guys thankyou for getting involved with this discussion

Just want to say...dont forget the rest of the Sjogrens World !!..this forum is called 'Sjogrens World'.....many more than 4 million people have Sjogrens in the World..its not just the numbers in the US the drug companies consider...

Therefore although the numbers probably are way smaller than perhaps Diabetes....worldwide...its anybodies guess how many more millions of Sjogrens affected people there are !

Epson I agree to disagree that we should accept that we are 'Sjoggies' and just accept that's the way it is...we have Autoimmune Diseases...the Vaccine likely could treat other Autoimmune diseases as well.
We are talking here about money...and if that's all it is..then money could be raised.

I get angry with big Pharma's just as much as anyone..and i am reminded all the time where the money goes..not really where we need it..


We cant just forget about the future and our children...its a bit similar to the arguments about global warming...you can stick your head in the sand or you can fight for a future ...its not about accepting your disease...we dont have a choice anyways..but its about looking forward...not standing still..

We must fight for our right to live !





irish

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #11 on: August 08, 2008, 09:12:23 PM »
I forgot to add that several years ago I read an article that stated that the researchers in some circles are beginning to think that the "Sjogrens" may be the initial autoimmune disease that actually leads to other autoimmune diseases. That could be very possible. Might be that most people have sjogrens in some shape or form but no dry eyes and negative blood work. But, they may be positive for lupus and one of the many other autoimmune diseases. Will be very interesting to see this thing unravel. Irish ;D

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #12 on: August 08, 2008, 10:00:59 PM »
Irish
Yeah I think they call Lupus the cousin of Sjogren's..its all related at the top by being an Autoimmune Disease..therefore the significance of any potential Vaccine such as this ..is ..Huge ! ..
many of us go on to acquire other AI's.. I myself have a fair collection already..it would be another advantage being able to stop this occuring.

This particular Vaccine is unique..the studies revealed that it reversed the symptoms of the Sjogren's disease even when Sjogren's was fully developed in the body.. (we are talking  mice here still but nevertheless...a unique result)

I can add a little more info for those who are interested.
A patent for a lot of the ideas behind the Vaccine has just been re-applied for and republished..Im assuming to protect rights that would otherwise become public domain..

....so at some level at least it appears someone wants to keep this alive.

For interested parties wanting to know the science behind it all ...do a google on patent # US20080058271






Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #13 on: August 09, 2008, 06:47:39 AM »
Has anybody forwarded this information to the Sjogren's Foundation yet?  I'm going to go ahead and do it again anyway - this is worth funding.

A vaccine that can REVERSE the disease process after it has developed - this is indeed huge.

I'm going to see Dr. Vivino in September - he does a lot of research - I'm going to give him this information and try to stir up some interest as best I can -

I've never been in sales, more of a computer geek - can any of your sales people out there give me some tips on how to promote this project?  I wish I was Bill Gates and had a pile of money and could just hand it to a researcher and say there you are - go for it.  (Sigh, OK enough wishful thinking - back to reality.)

Sue

Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #14 on: August 09, 2008, 12:41:44 PM »
I sent an email to research@sjogrens.org

Dear Sir or Madam:
 
I am a Sjorgren's sufferer and I belong to a forum called Sjrogren's World Community Forum. 
 
See the following thread:
 
http://sjogrensworld.org/forums/index.php?topic=6133.0
 
 
Recently one of our members came upon some very promising research towards a vaccine that in animal models actually reverses the progress of Sjrogren's even after the disease has fully developed.
 
See
 
http://www.sickkids.ca/mediaroom/custom/Sjogrensyndrome.asp
 
Upon further inquiry, our members learned that this promising research had been discontinued due to lack of funding.
 
We believe this would be a worthy endeavour to fund and I would like to submit this to the Foundation for your considerations.
 
Sincerely,
Suean Jennings
Mansfield, Pennsylvania

OK, misspelled my own name so this definitely proves I have brain fog.  Also, probably shouldn't have said "our" members, just "some" members or maybe just "I" want to see this being funded!

Sue