Stem Cell Action - Be the Change

kevinp

New member
The Genetics Policy Institute is a global entity that is harnessing the internet to promote the development of stem cell therapies.. they have initiated a new program called ?Stem Cell Action?.. It is a revolutionary new method of bringing people together that will advance their development a lot more quickly.. If you have interest in being kept up to date and putting your two cents in.. Please register

http://www.genpol.org/sca/

United we thrive...
 

barbara

Pioneer Founding member
I did read through the site and my understanding is that this is a group focused more on stem cell research at this time. Since they advocate for alogenic treatments as well as autologous, I think they are going to have a long road to hoe before making a dent in the powers that be. However, they do have Big Pharma involvement and money does help. I was a little dismayed to not see more doctors involved on their boards.

The reason I am so supportive of ICMS is that adult autologous stem cell treatment is not under the same regulations as alogenic stem cell therapy and therefore is doable right now. The focus of ICMS is strictly on safe a-asc treatment, nothing else. I believe if we can get a worldwide effort of clinics and doctors adhering to the ICMS guidelines and registry that this will make all the difference in the world to people who need therapy now, not years down the road.

It is good however, to see various groups advocating for stem cell therapy and research in any form. Only a couple of years ago, Jeannine and I were treated like a couple of con artists and snake oil salespeople just because we mentioned stem cell therapy. The world is finally catching up.
 

kevinp

New member
All excellent points Barbara... and certainly well made. I'm not sure about the assessment that they are focused primarily on research as at the 2009 Baltimore conference there were many sessions involving patient advocacy groups. It was actually at that conference I became convinced that the power is in the patient and I know their focus is increasingly there.

It is my impression from my discussions with the people who run the organization that they are interested in the most rapid development of stem cell therapies possible and they are agnostic as to the source. With that in mind, the scientific community is acknowledging more and more that the controversy over the use of embryos as a source of stem cells has become superfluous with the discovery of induced pluripotent stem cells. Recent studies indicate iPSCs are functionally equivalent to embryonic stem cells in any parameter that matters in terms of tissue replacement or regeneration although there is much work to be done. I can see that almost all those interested in stem cell function, autologous or otherwise, will rapidly move to the use of these uncontroversial, patient-matched, and pluripotent cells for most applications. The use of ESCs will be largely regulated to research and study of development while autologous sources will continue to be a sharp point of focus as agents which target these populations in the niches they occupy within the body may prove more and more powerful, negating the need to use external sources of cells entirely for many cases.

I'm interested in hearing more about the results that you may be aware of with autologous stem cells as it is my impression that they are marginal, at least in the areas I've read they have been tried although certainly in some cases it seems such treatments have been worth the effort and expense.

Regardless, I might venture to say that my discussions with others have led me to understand that the major progress we would like to see in all areas of stem cell therapy development will be made outside of North America and Europe, with therapies becoming available in Asia and India sooner because of the resources they are putting into the field and the more permissive regulatory environment. As a patient, I'm quite agnostic as to where I need to fly to get a treatment but it from a cost perspective it is horrible that many will die because they cannot afford the trip. It would be better if they were accessible to as many of my friends and colleagues who needed them as possible.

I would suggest that the supporting multiple organizations is a superior way forward as it is difficult to predict where the breakthroughs are going to take place. As much pressure and support as can be supplied on multiple fronts is for me the best strategy.

I would really love to see all organizations interested in developing stem cell therapies support each other as much as their resources and time make it possible, focusing on the result which binds them rather than the differences which divide. The result is what everyone is in it for.
 

barbara

Pioneer Founding member
You make excellent points as well. ICMS is focused exclusively on autologous adult stem cell therapy because of the laws here in the U.S. It is something that can be implemented immediately. There are lots of articles posted on this forum that deal with successful stories of a-asc therapy. The FDA cannot interfere with the practice of medicine and since the stem cells are within our own bodies, not from another source, this is what makes the difference in the law. The FDA however still wants to try to regulate our own stem cells by declaring them to be prescription drugs. This is being challenged in court. What needs to be accomplished in order to get safe adult stem cell therapy available in the U.S. and offshore is massive support from the public which puts pressure on legislators to get this settled once and for all. With millions of people dying, I cannot foresee much of a battle if we can get one waged. Offshore clinics will benefit as well because it weeds out the bogus clinics and gives patients the peace of mind to know which ones follow safe guidelines and use the registry. The registry is used so that doctors can see what therapy might work best for what disease. Doctors can also license their technology to other doctors that might want to use their proprietary method.

Many people cannot afford the extra expense of traveling as you mention. China for instance has some treatments that require a 30 day stay. The same for many other locations. The other factor to be considered is that some people are too sick to fly or travel any great distance. These problems must be resolved by allowing safe stem cell treatments wherever they live.
The U.S. is miserably behind. While we spend huge chunks of time and money arguing over health care reform, no one addresses the issue that no amount of reform will be able to keep up with the staggering amount of production and money lost because of terminal and chronic disease. There have got to be some cures whether the drug companies like it or not.

An invitation to join ICMS in pushing a-asc therapy through using the guidelines and registry will be extended to all stem cell advocate groups. In order to have success however, any other agenda other than a-asc therapy will have to take a back seat. It simply will not fly at this time.

iPS cells hold the key to the great things that can be accomplished with stem cell therapy. One company that I am aware of is very close to being ready to begin treatment using them. It's an exciting time we live in, but also one of gross ignorance and greed here in the U.S. I am devastated every time we lose a member on this forum or when I hear of someone who is very ill. Withholding treatment for us is downright criminal in my mind.
 
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