tag:blogger.com,1999:blog-5472921328078253036.post7948740744024625968..comments2024-01-27T19:53:22.965-08:00Comments on Current Research into Cures for Type-1 Diabetes: JDRF Funding for a Cure 2013Joshua Levyhttp://www.blogger.com/profile/05300553471793001620noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-5472921328078253036.post-50029757986162529802014-01-09T21:14:15.891-08:002014-01-09T21:14:15.891-08:00This comment has been removed by the author.prernahttps://www.blogger.com/profile/12609056556854803588noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-14740151266949649202013-12-03T18:06:23.189-08:002013-12-03T18:06:23.189-08:00Joshua, I do understand and in see your "one ...Joshua, I do understand and in see your "one more thing" comment.<br /><br />Of course, if the non-profit contribution to a for-profit results in a cure, I'd be very happy. So, from an abstract and highly theoretical standpoint, you are absolutely right. The thing is, in this case, we are talking about the for-profit who is actually in the very lucrative business of treating the disease "as is", meaning cronic and forever-dependant on it.<br /><br />I would absolutely agree with JDRF funding a cure-oriented for-profit underfunded company (e.g. run by a brilliant scientist with great ideas but no money, helping him/her not to depend exclusively on private equity, debt and other hard to find alternatives), not a treatment-oriented rich company.LarConBrihttps://www.blogger.com/profile/05673609391515865814noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-25297706556830965732013-12-03T18:02:43.163-08:002013-12-03T18:02:43.163-08:00Dear jazs07
Please note I never said it is immora...Dear jazs07<br /><br />Please note I never said it is immoral "for private companies to donate". I said it is immoral for a CHARITY to donate its money to a for-profit company who is in the business of selling insulin. By the way, I find it naive from JDRF's standpoint and totally immoral from the Recipient's standpoint. How can Eli Lilly even accept JDRF money? That is what I am referring to.LarConBrihttps://www.blogger.com/profile/05673609391515865814noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-5363703738850645842013-12-03T17:59:55.643-08:002013-12-03T17:59:55.643-08:00Josh, thanks for this productive exchange. I don&...Josh, thanks for this productive exchange. I don't think it is even debatable that JDRF's funding of basic research takes place, as the JDRF itself clearly states this. <br /><br />Please see a specific example of charity money going to fund a 45 bln market cap company here:<br /><br />http://ezinearticles.com/?Cure-for-Type-1-Diabetes-Is-One-Step-Closer&id=6821710<br /><br />and a Facebook discussion about it here<br /><br />https://www.facebook.com/permalink.php?story_fbid=310947548961980&id=161403643908447<br /><br />I also refer to my comment on Dr. Gerry Fishbones generic defence of JDRF's partnership with the industry.<br /><br />https://www.facebook.com/notes/dr-gerry-fishbones-blog/another-frequently-asked-question-of-jdrf/358419790861969LarConBrihttps://www.blogger.com/profile/05673609391515865814noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-12885727305798847582013-11-10T01:12:54.455-08:002013-11-10T01:12:54.455-08:00@GabLarConBriCar Joshua is right it is not immora...@GabLarConBriCar Joshua is right it is not immoral for private own companies to donate or fund a clinical research, who cares if it will benefit the company well we can also benefit from such studies. <a href="http://www.studyscavenger.com" rel="nofollow">Recruiting research volunteers</a> is quite hard these days for some reasons, some take part if there is money involve.Jazziehttps://www.blogger.com/profile/02802875754135268729noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-41931064569744476672013-10-31T21:22:03.971-07:002013-10-31T21:22:03.971-07:00One more thing: I'm not convinced that it is a...One more thing: I'm not convinced that it is always immoral for a non-profit to give money to a for-profit. Non-profits have specific goals. If the best way for a non-profit to achieve their goal is to give money to a for-profit company, then why not? <br /><br />Many non-profits find it is better to outsource some of their activities to for-profit companies. It makes sense to me to use capitalism for those things it is best for, while non-profits do those things that capitalism does not do well.<br /><br />JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-4687307434803164202013-10-31T21:21:04.793-07:002013-10-31T21:21:04.793-07:00This comment has been removed by the author.Joshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-34536418663236733312013-10-31T21:12:54.556-07:002013-10-31T21:12:54.556-07:00GabLarConBriCar: About your point 2 above, maybe ...GabLarConBriCar: About your point 2 above, maybe you should give an example of JDRF paying for basic research at a for-profit company. You've complained about it twice, but does it really happen at all? (I know that JDRF does fee-for-research contracts, but that is different. JDRF is not giving away money in those cases, it's paying for a specific service of some kind, and owns the results. It's like JDRF paying for PR services or payroll services, etc.)<br /><br />As for selling more insulin, as I've said before, I think that "smart insulin" type products are a potential path to a cure, so proper for JDRF to fund. You many differ, of course.<br /><br />JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-60600792443981011402013-10-29T18:39:56.234-07:002013-10-29T18:39:56.234-07:00Dear Joshua, thanks for your individual answer to ...Dear Joshua, thanks for your individual answer to each one of the three items I had commented upon. Here are my contributions to your points<br /><br />1- on how much JDRF spends on cure, your numbers are way different than what JDCA reports. Of course I have no way to audit who is right. Please see page 4 of the following report, where the JDCA clearly indicates that out of the 205 mln spending, the JDRF spends 28% on cure research (25% idealized + 3% practical).<br /><br />http://www.thejdca.org/wp-content/uploads/2013/05/How-Much-Practical-Cure-Research-Do-the-Non-Profits-Fund.pdf<br /><br />2- No, I don't consider big pharma the evil enemy. I consider it immoral that funding raised by a charity for cure purposes is given to a profit oriented company for basic science or to develop products to sell more insulin. <br /><br />3- Corporate Governance: yes, I did read the report. The JDRF rating is 2 out of 5 overall, which I do not consider brilliant at all. In the specific field of accountability, it got 1 out of 5.LarConBrihttps://www.blogger.com/profile/05673609391515865814noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-50581023564354671832013-10-23T21:46:08.229-07:002013-10-23T21:46:08.229-07:00This is my reply to GabLarConBriCar (her quotes st...This is my reply to GabLarConBriCar (her quotes start with a dash "-"). Each of her key points gets a separate comment from me:<br /><br />- corporate governance standards are way deficient. Details in http://www.thejdca.org/wp-content/uploads/2013/08/Corporate-Governance-STAR-Review.pdf <br /> <br />Did you even read that JDCA report that you linked to? It compared four diabetes charities and found that JDRF was the best one for governance! Of course, it pointed out many ways that JDRF could get better. And I'm sure it can improve. But in the meantime, it did the best of the four compared. <br /> <br />JDRF also does well on other measures of governance. Charity Navigator has a specific "Accountability & Transparency" section, and JDRF got 4 stars there. (So did the other major charities: ADA, DRI, and Joslin). <br /> <br />--JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-31642522624218838452013-10-23T21:45:35.383-07:002013-10-23T21:45:35.383-07:00This is my reply to GabLarConBriCar (her quotes st...This is my reply to GabLarConBriCar (her quotes start with a dash "-"). Each of her key points gets a separate comment from me:<br /><br />- their "partnership" with the industry is at least questionable in its logic. In summary, charity funding goes to big pharmas to develop ways to sell more insulin (read artificial pancreas, smart-inteligent insulin, even basic science! and others). <br /> <br />Certainly some people consider big pharma to be the evil enemy. If you are one of those people, then giving even one cent to big pharma is too much! My view is simple: anything to cure type-1 diabetes. If that means funding a university researcher, that's fine. If that means funding a small start up, that's fine. Same for a big company. I think it's very important that you fund companies differently than university researchers! You need a lot more controls, and contracts, and so on. But that is exactly what JDRF does. <br /> <br />I have previously blogged about JDRF partnering with "big pharma" specifically for AP research here: <br />http://cureresearch4type1diabetes.blogspot.com/2010/01/why-fund-j-and-j-animas-dexcom-close.html <br />In that blog posting, you can see that I'm nervous about it, but I do think it can be done well, and I do see the benefits of doing it (if done carefully). <br /> <br />Also, you seem to think that "smart insulin" is just another way of selling insulin. I disagree completely! I think smart insulin could easily be a functional cure (or within a hair's breath of one). Take one injection a day, or maybe one a week, and no carb counting, no blood checks, no long term complications, no middle of the night lows, etc. I'm sure you would claim that because you need to take an injection once a day, it's not a cure, but is it really all that different? As for AP some will consider that cure, and some will not. (Although if it leads to an implanted device, then more people will consider it a cure.) But even if not a cure, it will have a huge impact on long term complications. In a sense, that is how JDRF thinks of it, it is funded out of their "treatment" section, not the "cure" section. Finally, I don't think JDRF funds basic research at large pharma companies: were you thinking of something specific, when you wrote that?<br /><br />--JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-8878424884479592132013-10-23T21:44:59.993-07:002013-10-23T21:44:59.993-07:00This is my reply to GabLarConBriCar (her quotes st...This is my reply to GabLarConBriCar (her quotes start with a dash "-"). Each of her key points gets a separate comment from me:<br /> <br />- only a fraction of their resources goes to cure, while most of their funding campaigns tell donors their money is for cure. <br /> <br />Well, it is certainly true that about 61% of JDRF's funding goes to cure based research. For comparison, about 30% goes to treatment, and about 8% to prevention. (Artificial Pancreas research is under treatment, and is about 12% of total). My guess, is that people who have had type-1 for a long time lobby for more money into treatments, while those newly diagnosed lobby for more into cure research. So I'm sure JDRF is "getting yelled at in each ear" when it comes to allocation. <br /> <br />But as for their funding campaigns, it depends where you look. Their logo, at the top of most (all?) of their web pages, says very specifically: "Improving Lives. Curing Type-1 Diabetes". (and Cure is in a different color.) That seems spot-on to me. On the other hand, near the bottom it says things like "Walk to Cure Diabetes" and "Ride to Cure Diabetes", which does over emphasize the cure part. If you click on "Research Progress", you see four sub areas, all of equal size: JDRF Research, Cure, Treat, and Prevent, so that seems pretty reasonable. I think if you look at the whole web page, you get a feel for all the things that JDRF funds. But if you only look at one slogan, yes, that one slogan might only talk about the cure. <br /> <br />Budget info: http://jdrf.org/about-jdrf/fact-sheets/research-funding-facts/ <br /> <br />--JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-90535972094365811582013-10-23T20:44:02.200-07:002013-10-23T20:44:02.200-07:00Emily: My understanding is that JDRF funded Dr. Fa...Emily: My understanding is that JDRF funded Dr. Faustman prior to her BCG work (over 10 years ago), but never funded her BCG work. My list is by cure, not by researcher, so Dr. Faustman's BCG work is non-JDRF funded, even though she was funded by them prior to the BCG work.<br /><br />As far as the BCG work goes, she has published a phase-I study, which was unsuccessful. (Failed pre-set primary end point.) She has said that she has already raised enough money to run a phase-II trial, so I expect to see results from that as well. But as the first trial did not work out, I'm not expecting much from the second. To the best of my knowledge the second trial has not yet filed cliniical trial registry paperwork, or started recruiting. --JoshuaJoshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-63445937674278543452013-10-23T20:06:34.636-07:002013-10-23T20:06:34.636-07:00Leo: I don't think 140 character tweet is a go...Leo: I don't think 140 character tweet is a good way to learn about what they are doing! :-) Their clinical trial paperwork does not mention Sertolin cells at all: http://www.clinicaltrials.gov/ct2/show/NCT01652911. You might want to ask them where it says they are using Sertolin cells or what press release they issued that says they are using Sertolin cells right now. I just don't see it. --Joshua<br /><br />Joshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-40336617587692918592013-10-22T22:03:35.443-07:002013-10-22T22:03:35.443-07:00Hi
hmm I have tweeted Sernova this
@SernovaCorp ...Hi <br />hmm I have tweeted Sernova this<br /><br />@SernovaCorp Hi, I just want to ask if you are using, for the current clinical trial, full immunospression or you are using sertoli cells<br /><br />and the answer was this<br /><br />we are infact using our patented Sertolin™ cells. Please check out our website & feel free to ask us anything else!<br /><br />I am puzzled !!Leohttps://www.blogger.com/profile/17920706152572842376noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-79815880776195849492013-10-22T12:35:02.069-07:002013-10-22T12:35:02.069-07:00I agree fully with GabLarConBriCar that JDRF coul...I agree fully with GabLarConBriCar that JDRF could be using a much bigger percentage of their funds toward research. However, you have Faustman's BCG trials listed under not funded by JDRF. I contacted JDRF and they told me that they have funded Dr. Faustman in the past, but they are not currently. Not sure why this is, I think her research seems very promising.Anonymoushttps://www.blogger.com/profile/07926500283970406162noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-37610813532738333082013-10-19T08:29:48.575-07:002013-10-19T08:29:48.575-07:00JDRF's prominence in the T1 cure community is ...JDRF's prominence in the T1 cure community is obviously undeniable. In this sense, I generally agree with your post. <br /><br />However, as very well pointed out by JDCA and others, their deficiencies are notorious. Just to mention the three most notable ones:<br /><br />- only a fraction of their resources goes to cure, while most of their funding campaigns tell donors their money is for cure.<br /><br />- their "partnership" with the industry is at least questionable in its logic. In summary, charity funding goes to big pharmas to develop ways to sell more insulin (read artificial pancreas, smart-inteligent insulin, even basic science! and others).<br /><br />- corporate governance standards are way deficient. Details in http://www.thejdca.org/wp-content/uploads/2013/08/Corporate-Governance-STAR-Review.pdf <br />LarConBrihttps://www.blogger.com/profile/05673609391515865814noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-19644229839589606882013-10-16T21:14:04.592-07:002013-10-16T21:14:04.592-07:00Joshua you are the best! Thanks for doing all of t...Joshua you are the best! Thanks for doing all of the hard work of compiling and reporting on the research :-)<br /><br />Suzanne<br />mom to Merrick, dx 7/10Suzy Qhttps://www.blogger.com/profile/01524780482749704554noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-45658111281155182592013-10-16T01:02:54.258-07:002013-10-16T01:02:54.258-07:00This comment has been removed by a blog administrator.Anonymoushttps://www.blogger.com/profile/04364830144685438209noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-79275859739675752222013-10-09T23:57:56.415-07:002013-10-09T23:57:56.415-07:00Hi
I totally agree with you!
I must have skipped r...Hi<br />I totally agree with you!<br />I must have skipped reading this "To protect the islets from immune cell attack, the patients are given an antibody and immunosuppressive medications."<br />I do hope sertoli cells do their job<br />Best Regards<br />LazarLeohttps://www.blogger.com/profile/17920706152572842376noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-29918441191822674172013-10-08T21:22:51.387-07:002013-10-08T21:22:51.387-07:00Sernova's work is interesting. However, their...Sernova's work is interesting. However, their current clinical trial is using full immunospression. (It is no different than many other transplant trials which I do not follow, because they require long term immunospression. I consider that trading one set of issues for another set, which is no better, and might be worse.<br /><br />I know that they have plans to add sertoli cells to their Cell Pouch, and they hope they will not need immunospression. At that point, they really will be testing a cure, and I will list their trial then. (Obviously, I'm already following it.)<br /><br />Some might think of this as "splitting hairs", but (in my opinion) the current trial is not aimed at curing type-1 diabetes. It is laying the foundation for a future trial, which will.<br /><br />Joshua Joshua Levyhttps://www.blogger.com/profile/05300553471793001620noreply@blogger.comtag:blogger.com,1999:blog-5472921328078253036.post-10706578892629116242013-10-08T09:01:13.936-07:002013-10-08T09:01:13.936-07:00Hi
Great to see this summary but I do not see my ...Hi <br />Great to see this summary but I do not see my favorite for a cure in it... I do want you to take a third look (according to your blog you have two entries about them) at Sernova & Edmonton's lead scientist dr James Shapiro in case you have missed it .. They are in clinical trials like 6 months already and they recently announced preliminary positive results http://sernova.com/press/?ID=166<br />Keep up the good work informing us<br />Best Regards<br />Lazar Tomovski Leohttps://www.blogger.com/profile/17920706152572842376noreply@blogger.com