So what’s going on right now? With just a little more digging, I found out. HB 2300 is in a senate committee, and there will be another hearing on Wednesday, June 3rd, at 3:00. Let’s keep our fingers crossed!
Okay, so let’s put this issue in context. I am not an atheist.(Although my sister is– hi, Chris!) But the actions of religious groups related to Right to Try laws are becoming really disturbing, and quite honestly, hypocritical as could be. Hypocrisy has got to be my least favorite quality, and the Florida Council of Bishops is putting on a big display of that quality right now.
The Florida Conference of Catholic Bishops and Florida Right to Life now oppose the Senate version of the “Right to Try Act” (SB 1052) because Sen. Jeff Brandes, R-St. Petersburg, the bill sponsor, has added a provision dealing with end-of-life decisions by the patients.
The groups are specifically questioning an amendment that would let Florida join more than two dozen states that allow frail or terminally ill patients to arrange for a “physician order for life-sustaining treatment” (POLST), which outlines specific end-of-life procedures. For instance, the POLST — which is an arrangement between the patient and his or her physician — could determine whether the patient would receive tube feedings or would opt for medical care for “comfort only” rather than more intensive treatments.
So what does this really mean? They’re willing to keep terminal patients from the right to try experimental drugs so that they can keep people from the right to end their own lives. Whatever happened to ALL that concern about civil liberties they had for business owners???
So Paul Knoepfler has an excellent article on his take on Right to Try on his blog (find it right here.) I think that it’s balanced in a lot of ways, and yet I do have to say that I think there are more issues that need to be take into account. There’s a piece of advice that I’ve seen floating around the web for quite a while: if you write something online that you feel is significant, make sure that it’s preserved in a more permanent way than on Facebook, as a comment on someone else’s post, etc etc etc. That’s what I’ve done here. 🙂 So… here’s my comment on Paul Knoepfler’s post on Right to Try issues. Continue reading →
In 2011, my life was shattered when I was diagnosed with a mysterious, incurable disease that always ends in blindness. The only hope on the horizon was a drug that broke all barriers in early testing. This drug, which replaces damaged cells in the eye, comes from the new class of stem cell based treatments that could cure the incurable, providing hope for patients with cancer, heart failure, ALS, cerebral palsy, and many more fatal and disabling diseases.
I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.
That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.
I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
Here’s the link for the original South Korean article showing even more positive results for patients when the Ocata technique was used. This is a much smaller study with only four people, and I think the real value is that it supports the original results in the Lancet. There were two AMD and two SMD patients, and when I read the full article, I could see that all of them had improvements. Three were very significant (vision improved 50%, 100% (twice as good, and I can never remember if that should be 100% or 200%), and 1300% improvement– yes, vision that was thirteen times better than before the study!
The fourth person wasn’t considered to have significant improvement, but I’m not so sure that I would agree. Their vision went from being able to read one letter to two, and when your vision is that bad to start with, any improvement helps.
Anyway… I highly recommend reading the whole article. The complete pdf if available for free, which is usually not the case– so take advantage of it!
YES! These are the results we’ve been waiting for from CHA in So. Korea. They are great, and they 100% support the Lancet results from Ocata’s own trials. The thing that really impresses me about the CHA results is that just like Ocata’s, they were published in a peer-reviewed journal instead of being released through a company announcement. I have to say, I’m kind of over company announcements. (Remember when StemCells Inc did that??) Anyone can announce anything. I can announce that I just won Powerball. That doesn’t make it true! An article in a peer-reviewed journal is the gold standard.
So if you read the Oregonian, by any chance, you really should look in the op-ed section today… because my article is there! 🙂 It’s also online at this link: Oregon Needs a Right to Try Law
I’m so grateful to the Oregonian for printing this!! Of course, that having been said, it was PAINFUL to have to keep that piece to 500 words. There was SO, so much that I had to leave out– the gap between patients and experts, the crucial role of patients’ anger and sadness and frustration, the specific criticisms against Right to Try laws, their limitations and strengths, the entire history of Right to Try, many more details about exactly how the law is making it through the states and what might happen next, and so on and on and on and on!! Well, there will be more articles, believe me. 😉 For now, check this one out!
So… I’m working on an article about Right to Try laws from a patient’s point of view, and one of the best sources for research– on that subject or any other related to stem cells– is Paul Knoepfler’s blog. I check it pretty much every day. Today, there was an article about stem cell clinics. I’ll let you-all go over there and check it out, but I posted a comment that I kind of like. I’ve often heard the advice that if you write out a long comment on someone else’s blog, you really should publish it somewhere else, too. (For one thing, I can’t be absolutely sure it’ll make it through moderation.) So here it is– my take on stem cell clinics (for the day, anyway.)
BTW, I’m not a fan of them. At all. Sorry, I know some people have had good experiences, but I’m just Not. A. Fan. So that might come through a tad… Continue reading →
Here it is, and you don’t want to miss this one! The ending just might be my favorite bit so far.
In the brief break between speakers, I quickly looked over my notes about ALS. 8 out of 100,000 people were affected. There were many different phenotypes, some sporadic; some genetic; some caused by God only knew what. Even when ALS was familial, the specific genes involved were very difficult to pin down. Abnormal ones could occasionally be successfully targeted with success, but that was rare. There had been 160 treatment trials in the past 5 years, and out of those, only one effective drug had emerged, which was Riluzole.. And “effective” was a relative word in that case, to say the least. Continue reading →
Ocata does have a Wiki page, of course, but it needed a little updating. There’s a LOT that could potentially be added because so much exciting stuff has happened recently, and today I added the news about the official completion of Phase I/II and the EMA pivotal trial designation. There’s still a lot that could be done, but I’m really glad that the page exists in the first place. Go and take a look!