A snippet from Part 4 of Light a Candle: (warning: narrative excellence not guaranteed):
How exactly had this happened? Where had everything gone wrong, and why? We were all groping the dark for answers. I knew better than most people that it had almost certainly not happened because of problems with the science. I still winced when remembering the endless odysseys to the OHSU library, wheedling my way in to do forbidden research—or at least research that it was forbidden to do in any more convenient way if you’re weren’t either a student or a professor. It also didn’t really explain anything to say that Astellas had been willing to do the JV and then leaped on the opportunity to take over the company outright. Who wouldn’t have done that? Why were they able to do it? That was the real question, and the key.
Pentecostal protestors weren’t marching with pickets around Pfizer. The top corporate officers at Janssen Pharmaceuticals weren’t raving evangelicals. Death threats weren’t being sent to the entire board of directors at GM. Nothing immediate was happening, and perhaps it would be better if it were. The obvious and immediate threat could be confronted and fought. But the sneaky sludge clogging the gears had been building up for many years. In brief? The long-term situation created by “religious” protests had led to the current reality, which was that Ocata’s perceived worth was a fraction of its real one. The market ran on fear, uncertainty, and doubt. Logic often had little to do with value that was perceived. Ocata did not have current cures that were commercially available. People couldn’t take their blind grandmas to the retinal specialist and bring them back crying, “I can see again!” Embryonic stem cell research was buried under layers and layers and layers of smothering superstition, fear, and a strange hatred. So direct experience was all that would convince the average person. And it was still years away from happening.
Except that in Japan, it wouldn’t be. That culture simply didn’t care; they were untroubled by the shibboleths. They knew that saving people’s lives, adults’ lives, children’s lives, was more important than hysterically clinging to some insane illusion about the value of a blastocyst that would otherwise have been thrown into a dumpster behind a fertility clinic.
Another rant was definitely shaping up. I rubbed my nose.
Check this out!!
The EU agrees to fast track desperately needed meds.
The EU is pulling FAR ahead of us with this one. The European Medicines Agency (EMA) has decided that trial medications for incurable and untreatable diseases can be fast tracked and approved for use with small populations– IF they’re getting great results. (Such as the success that Ocata has shown with its stem cell based cure for the most common cause of blindness in the developed world. HINT HINT HINT.) That is not happening here.There is no genuine fast track for medications that show that kind of desperately needed promise. The “breakthrough status” that is available for these types of meds is very inadequate.Very few medications have ever been granted this status until Phase III of testing; real promise might be shown much earlier than that. And quite honestly, this situation why I decided to support the Right to Try laws in the U.S. As imperfect as they are (and they do have issues, beyond a doubt) they may provide pressure for the FDA to adopt the same thing that the EMA has now done.
It’s easy to say that adopting the same policies in the U.S. would lead to little regulation, and that is a real concern. But look at what’s happening here. The EU is not somehow throwing out all regulation.In fact, that’s just what they’re avoiding with this decision. Here’s why. If you or a loved one ever have a terminal/disabling disease, reason and logic will go straight to hell. You won’t care what’s regulated or what isn’t. Believe me, you won’t. You’ll do anything at all that might help– and that means you’ll be vulnerable to some really bad choices. People do make those questionable choices right now, and there are more of them available than ever before (illegal stem cell clinics being a good example.) The only way to stop this is to give desperate people other options.
The EU is doing what they need to do in order to accomplish this. We can do it too, and we have to. We can’t play these games with people’s lives anymore here while the rest of the world figures out exactly how to help those who suffer.
Posted in Laws and Politics, Right to Try
Tagged cures, EU, European Medicines Agency, European Union, incurable, miracles, ocata, patients rights, right to try, stem cells
This is REALLY exciting… I had a few thoughts about it to share on Facebook, and I’m reposting them here:
Cures for autoimmune diseases ARE possible!! They’re on their way, and they could be almost here! Well, there’s just ONE problem… they originally came from a stem cell line where at SOME point, LONG long ago, a three day old blastocyst was destroyed. One that would otherwise have been thrown out at a fertility clinic. One that never had a chance of being an embryo. Fifty million people have autoimmune diseases in America alone. Are they more important than one blastocyst that was sacrificed years ago? There are people who say yes. We are headed for a showdown. Share if you are on the side of the fifty million!!
New Ocata Press Release About Autoimmune Treatments in the Pipeline!!
A reviewer on Amazon asked me if I knew anything about new Alzheimer’s treatments in development, which led to this! I don’t think Amazon is letting through links in reviews or comments anymore, so this is definitely the best way to get it.
Here’s a great, brand-new scholarly article about the current state of stem cell therapies being developed for Alzheimer’s (personally, as y’all probably know by now, I think that’s where the cure will come from.)
“Stem cell therapy for Alzheimer’s disease and related disorders: current status and future perspectives.”
The best part is that the full article is available free on Pubmed Central. Here’s the link for that:
Absolutely free full text PDF!
Another thing I know of is some new work with identifying more information about a gene that carries risk for developing Alzheimer’s. The stem cell link is that induced pluripotent stem cells are being used in the process (which is the best use for them at the present time, I think. IMHO, they’re so not ready for clinical application.)
Elucidating Molecular Phenotypes Caused by the SORL1 Alzheimer’s Disease Genetic Risk Factor Using Human Induced Pluripotent Stem Cells.
So take a look at those (especially the first one), and I’ll have Day Six of the UC-Davis conference coming up very soon. 🙂
If you haven’t seen this one already, you do NOT want to miss it!!
Stem cell treatment of degenerative eye disease.
A really great, broad overview of what’s going on with the usefulness of different types of stem cells and vision right now. It’s even BETTER if you have institutional access and can read the entire article… but either way, don’t miss this one.
At the end of Part 2, the opening night of the conference had just ended. We pick up the next day with the main speakers. More secrets of illegal stem clinics are revealed…
At the main conference the next day, I searched through tired-looking pastries on the side table, keeping a close eye on the other attendees. Virtually everyone seemed to be an academic. Paul Knoepfler was like an adorable teddy bear, huggable and self-effacing, all but blushing when I asked for a picture and an autograph.
There was the bouncy-ball-man again. He was leaning forward and talking loudly to a woman whose name tag proclaimed she was Alison Sorkin, a UC-Davis professor of bioscience. I tried to read his name tag, but he was turned away from me. He certainly did sound enthusiastic. A tall man leaned partly against a pillar, listening with a faint smile on his face, the corners of his eyes gently creased. I guessed his age at around sixty-five; he had the healthy, fit look of a man who had spent his life doing rigorous physical work. But his eyes were very sad. A woman stood listening to them all, a few feet away, her dark hair cut in a pixie shape around her soft face. Her hands nervously plucked at each other, and she seemed to be taking a series of short deep breaths, as if building a sentence that never quite got all the way to her lips. I wondered who all of them were. The identity of the woman mystified me just as much as the bouncy-ball man. I would be willing to bet that she wasn’t an academic either.
We all took our seats (and very uncomfortable ones they were, too,) and the presentations began.
Posted in Stem cell ethics
Tagged Cell Surgical Network, CSN, cures, FDA buyers' club, Gerhard Bauer, investigational drugs, Leigh Turner, Lisa Ikemoto, Neuralstem, paul knoepfler, stem cell clinics, stem cells, StemGenex, ted harata, tim caulfield, uc davis
At the end of part one, Tim Caulfield, keynote speaker at the conference, was addressing the problem of illegal stem cell clinics worldwide…
Tim Caulfield looked up. “So what’s the harm?” he asked.
I wasn’t sure if anyone in the audience was supposed to answer the question, but I did not have a good feeling about whatever was coming next.
Posted in Uncategorized
Tagged cures, dickey wicker, embryonic stem cells, FDA buyers' club, geron, hype, Neuralstem, ocata, oklahoma, paul knoepfler, regenerative medicine, right to try law, shirley vs sebelius, stem cells, tim caulfield
So… I’ve been promising to post material from the Feb 12th conference for a while, and here it FINALLY is! I’ve been moving to a new house… and I didn’t have net access for weeks and weeks… and the dog ate my homework… and, okay; enough already. I think I’ve been trying to fit these notes into literary form, because they will become an important aspect of the book. But it’s more important to get them out there for people to read. So… keeping in mind that these are fairly rough… here’s Part One!
The scene opens on February 11, at Tim Caulfield’s introductory talk…
Posted in Stem cell ethics
Tagged athletes and stem cells, cures, emcell, gordie howe, hype, Integrated Medical Center, investigational drugs, paul knoepfler, peyton manning, rafael nadal, regenerative medicine, stem cell, tim caulfield, uc davis
I’m leaving for the conference today, yay! I’m really excited about this one. There are so many important issues in this area with stem cells right now, especially with the Gordie Howe story. So much of the stem cell field is unregulated right now the second you get out of the U.S., and that’s an issue that has to be addressed. Here’s the link to the pdf of the agenda for the day:
Symposium Flyer 2.12.15 (1)
Now that the holidays are finally over, I’m really getting some of these stem cell activities in motion. Yay! That includes a wonderful opportunity to go to UC-Davis for this Feb 12th event. They might still have some spaces left, so if anyone reading this is within any reasonable drive of Davis, I URGE you to check out Paul Knoepfler’s post on the subject. Here’s the piece on his blog, and that’s how I found out about it. What it makes this so exciting is that they’re apparently going to be talking about some REAL, GENUINE ethical issues. To wit… what on earth are we going to do about all of those stem cell clinics popping up in various and assorted countries? You know, the ones with the weird, dubious, expensive treatments that the FDA would never approve in a gazillion years? And while we’re on the subject, when is the FDA going to do anything about regulating, say, $10,000 stem cell creams? And what about those “Right to Try” laws? They passed in four states in November, but what is the federal government going to do, if anything? What should they do?
Anyway… it looks like it’s going to be an amazing seminar, and I’ll come back with lots and lots and lots of notes!! 🙂
Posted in Stem cell ethics
Tagged Alison Sorkin, cures, embryonic stem cells, hope for terminally ill, hype, induced pluripotent stem cells, investigational drugs, Leigh Turner, Mary Ann Chirba, paul knoepfler, Richard Garr, Timothy Caulfield, uc davis, university of california, university of california davis