Tag Archives: hope for terminally ill

UC Davis 2nd Annual Stem Cell Ethics Symposium: Feb 12th.

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!! 🙂

Working in hospice , Part One

So today was the wrap party for NaNo (National Novel Writing Month,) and I read from the stem cell book I worked on all through November. (Yep, it’s the planned book on this site, And the Blind Shall See: The Promise of Stem Cell Cures.) It came from the section on working in hospice with Alzheimer’s patients. People were really touched (and I’m not going to try to claim that it was from the amazing writing quality!) No, it’s because everyone can relate to the desperate need for cures for degenerative diseases. And yet it’s basically a situation where even the most educated people never know almost anything about what’s really going on with truly effective stem cell research (like Ocata’s.) If you’ve ever lived with the situation of caring for a relative who has a degenerative disease like Alzheimer’s, you know how utterly draining it is, how much it takes out of you. I saw it every single day when I worked hospice. And it isn’t just older people, believe me. There was one woman I knew who died of MS when she was only thirty-six years old. I’m going to put up a series of posts on working with patients who had degenerative diseases, and there’s quite a range of those. Alzheimer’s, other types of dementia, MS, COPD, severe arthritis, and on and on and on. These might not be the most cheerful stories in the world– but we’re working on a happy ending through regenerative medicine! 🙂

Arizona Passed “Right to Try”

So… as everyone may have heard, Arizona voters just passed Proposition 303, the “Right to Try Law.” This event didn’t get anywhere near the media press that it should have (I didn’t read anything about it until today, in a Vancouver B.C. paper.) Here’s a good summary:

The measure will allow investigational drugs, biological products or devices to be made available to eligible terminally ill patients. The term “investigational” refers to medical treatments that have completed phase one of a clinical trial but have not yet been approved for general use by the Food and Drug Administration and remain under investigation in clinical trials.

I don’t know. I’m afraid that this is one of those things that sounds better than it is… one of the main problems being that it doesn’t do anything at all towards helping patients and their families to actually afford these drugs. Insurance companies do NOT need to cover them, which really, really bothers me. And there are a lot of companies who I wouldn’t trust a zillionth as far as I could throw them with an anvil tied on when it comes to this issue.

But… four states have already approved the same kind of referendums (Colorado, Louisiana, Missouri and Michigan.) The Colorado initiative was a lot better known, and the interesting thing is that biotech company Neuralstem has been a big player. The irony is that they’re one of the very few companies I would halfway trust to do a decent job with this, and yet I think they’re clearly participating in the process of opening the door to that slippery slope– remember that anvil-tied-on thing?

Overall, another issue, of course, is that these are state laws, and they’re going to be superceded by federal law when it comes to what the FDA will and won’t do. So that may sink the whole project. And then there’s the fact that only terminal illnesses will be covered. What about AMD? What about diseases that steal all quality of life and yet aren’t strictly “terminal?” Why not cover those too, if any are going to come in under the law at all?

I think the final message is that these “right to try” laws represent an idea that is something to watch. I can see both good and bad here. And hopefully, the bad won’t predominate. YMMV.