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We want our lives back
July 23rd, 2012
Scott,
We’ve spoken briefly over the years and our opinions have varied about potential treatments for diabetes, but do you believe something is gonna happen? The miracle breakthrough? Is it realistic to think something can get commercialized when pretty much every diabetic out there believes a cure or better treatment will never happen because they make too much money off us? That would absolutely devastating if true.
I know your trying your hardest to make the Islet sheet a reality. In your opinion are the chances more likely it will work effectively than not work? Have you looked into some of the other research groups like Sernova, ViaCyte, Exsulin, Zhao’s Stem Cell Educator, CureDM? I’m so F****G tired of dealing with diabetes I just can’t imagine going on like this for many more years. People are clueless to how bad this is. I want my life back before its gone. I’m going on nearly four decades and am running out of life. I can’t sit back and wait for the FDA. Someone has to do something as fast as realistically humanly possible.
I would like to donate a few bucks, but would you prefer to the islet sheet or Patient 13 [a documentary film about Scott and the Islet Sheet research]. I’ll gladly be patient 14 if there is a slot open.
God bless,
Gary
Hi Gary,
I understand your frustration. I have developed patience over these many years but I have my frustration moments, mostly focused on the people who channel funds into various unpromising approaches to a cure. How could they be more wrong? But on one thing I disagree with you: Big Pharma is not capable of stopping a cure if they wanted to; there are just too many actors and drug companies are always trying to get an advantage. I can say from direct personal experience that certain big firms do see encapsulated islets as a potentially valuable product and are acting accordingly. Far more damaging has been the indifference of JDRF to ventures such as Islet Sheet Medical.
To put it plainly, the Islet Sheet is as close to a cure as we will get in my lifetime. And we will have proof of that in the next year.
I am familiar with the other approaches you mention. Sernova’s Cell Pouch System may be useful in conventional islet transplantation but provides no immune protection, so it helps with neither of the critical issues: supply of tissue and immune suppression side effects. ViaCyte has a competing macrocapsule that has been shown to be effective in rodents. We think the Islet Sheet will function better in large mammals. But on the positive side ViaCyte’s progress in transforming human embryonic stem cells into islets has been excellent, and when the time is right I hope we can try putting their cells in the Islet Sheet. Exsulin is developing a drug targeted at regeneration of insulin-producing islets in patients with established type 1 diabetes. Several such ideas are in development, including Denise Faustman’s. (CureDM has the same approach but to date they have published little.) I do not understand Yong Zhao’s paper; I hope someone repeats it. As I have said, these approaches are worth trying given the risk and benefit. But I think it would take extraordinary luck for any of them to work in human beings. We need to know a lot more about both islet development and islet autoimmunity.
Gary, I want my life back too. But my life is at the moment mostly about getting the Islet Sheet shepherded through large-animal studies so we can raise the funds needed to get it into the clinic and the market. I would be happy to have that part of my life in my past.
Scott
Sernova’s Cell Pouch System, when the whole product is package the cell will be protected with out immune suppressing drugs. I know I have email the company to get answers. The first step is to test the pouch using immune suppressing drugs. I was told this approach is being used because it would take way to long to try to get all of the technologies approved at the asme time. So they are working on get one product approved at a time while the other is still being developed. As for CUREDM the company was sold to big Pharma, and I can not even find mention of this product on the web site the company was sold to. Also I notice you did not comment on Dr. Zhao work is very promising. Some Doctors in Spain are going to try this approach on 30 patients in the near future.
Brian, thanks for the update. I hope the study in Spain goes ahead because Dr. Zhao’s publication did not have much data I would like to see.
Sorry I made a huge mistake I should have included the link I should always provide some type of refernec. It is in Spanish. http://www.hayalternativas.org/noticias/?p=1015
Slightly off topic…While I remain very optimistic and hopeful about discoveries and innovations that will truly cure diabetes, there are ways that we as type 1 diabetics can wrest firm control of our condition. Dr Bernstein’s approach outlined in his book “Diabetes Solution” uses a logical low-carb approach to minimizing reliance on insulin and reducing the paralyzing uncertainty of blood sugar control.
After adopting his techniques for the last 2 months, I have never felt more free and in control in my 12 years of being type 1 diabetic. As a neurosurgery resident with long and unpredictable hours, managing diabetes can be a challenge. With Dr. Bernstein’s method, however, I feel as close to a cure as ever with numbers now typically running 75-110. It’s obviously not a cure and requires some dietary discipline, but until Scott’s work is complete it’s something that we as type-1 diabetics can take control of now.
Here is a link to some info on Dr Youngs research..
http://www.biomedcentral.com/1741-7015/10/3/
You will have to copy/Paste it.
Sernova’s system (based on transplants already performed on 19 patients by Dr. Rafael Valdes in Mexico City) does offer protection from autoimmune attack. Using the Sertoli cells from the testicles which naturally protect against autoimmune attack, these Sertoli cells are transplanted with or alongside the porcine islets. Dr. Valdes transplanted 19 patients with porcine islets, surrounded by porcine Sertoli cells in a fairly large device with tubular chambers. But he did not conduct large animal studies first. He had success, although only a few of his patients remained insulin free for two years, virtually all had reduction of insulin, few hypoglycemic episodes; in short, similar to the results LCT has gotten. If his research was allowed to continue, we would probably know for certain if his approach was a cure or just a therapy to help aid euyglycemia. I do hope that Sernova is consulting with him (though I doubt that, having used his idea), because when the DRI tried to duplicate his procedure, they failed. Valdes responded as to why they failed, but basically he was silenced and his research was stopped as they felt it was too dangerous. The patients he transplanted, to my knowledge, claimed improved glycemic control for years after the transplants. We all know these transplants do not last more than five years or so and Valdes was not able to transplant again so the two patients who were completely off insulin now use insulin, but less and better control, last I read. I do not like the looks of Valdes’ device, cosmetically, but that is beside the point.