Category Archives: Stem cell ethics

The Missing Word: Why we don’t have stem cell cures.

If you have been following stem cell research at all, and especially if you or a loved one has an incurable disease that could only be cured by a stem cell-based treatment, there’s one question that has burned in your mind and kept you up at 3 a.m. more than once. And it’s this.

After so many years of heavily funded ADULT stem cell research, why don’t we have stem cell cures?

The answer is both simple and heartbreaking. The wrong kind of research has been funded. If adult stem cell research was ever going to get much of anywhere, then the last stem cell treatment approved by the FDA would not have been in 1956. Yep, you read that right. NINETEEN FIFTY-SIX.As in fifty-nine years ago.

Funding for embryonic stem cells has been blocked not once, but FOUR SEPARATE TIMES. The federal funding block would still exist if Shirley vs. Sibelius hadn’t narrowly been struck down by the Supreme Court two years ago. The only type of stem cell therapy that holds any real hope of helping suffering human beings has been defunded, demonized, villified, and found guilty by association.That’s why Ocata’s revolutionary stem cell research is going to Japan, where they really don’t care about the supposed “morality” of using HESC’s. (The irony, of course, is that Ocata’s stem cell technology doesn’t destroy embryos at all. The research itself is guilty by association.) No, they care more about cures, which is apparently too much to ask in the U.S. (and apparently the entire Western world, seeing as how Nouse is a British source.) How can this be? This article pretty much sums it up. Business plus politics equals science: The underworld of regenerative medicine

But there is a GLARINGLY MISSING word in that headline. One word. How do we know? This.

“The company’s focus is regenerative medical treatments using human embryonic stem cells (ES). There is widespread controversy about their use, many of you will know and have a different opinion regarding how and when, if ever their use is justified. The very creation of therapeutic stem cells is central to the debate as it involves destruction of embryos. The debate is complex and multisided. Some argue that a life is created therefore termination is unjust. Whereas others feel that a life is formed at a later developmental stage and therapeutic value of these early pluripotent cells is too great not to utilize.”

Can we talk here? Can we be honest? There is ONLY ONE REASON why anyone would think there is “widespread controversy” about the use of hesc’s, whether their use is “justified”, etc etc etc. The debate is not “complex and multisided.” It exists for only one reason. And that’s the missing word.

RELIGION.

No, that word doesn’t sum up the problem by any means. But notice that I said religion, not God. Religious fundamentalists have made this argument since 1998 because they’ve convinced themselves that they’re speaking for what God wants, and they have blocked stem cell treatments that could have cured millions of incurable diseases ever since. That’s the only reason. Never mind that Ocata’s treatments don’t even destroy a single embryo but get lumped in with those who do.

So why can’t this stupid article just be honest? Don’t use weasel words like “some.” Say “people who claim they are speaking for God.” And say “religion.” Just be straight with us. But that this would be too honest, and we can’t have that.

Nobody knows what God wants. I don’t know, and the fundies certainly don’t know. But one thing I do know is that millions of people are suffering and dying from diseases that have no treatment and no cure. Embryonic stem cells could provide that cure. If you’re reading this and you’re an atheist, this one is a pretty easy sell. But if you’re a person of faith– as I am, which may surprise you if you’d read this far– then think about this. Does your God want millions of people to suffer and die unnecessarily? Because if you can say “yes” to that… then that doesn’t sound like a loving God to me. It sounds more like a god that people create from the worst parts of themselves. And think, really think, about whether or not this would be a god worth worshipping– or if people are just trying to find a way to justify their own prejudices and fears by stuffing them into the missing word.

Florida Council of Bishops Attacks Right to Try Law– What Will This Mean?

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.

On one hand, they’re demanding that “good Catholic business people who can’t in good conscience cooperate with this” shouldn’t have to provide contraception coverage for employees under federal law. (See? Right here. Catholic Bishops Demand All Businesses Be Given The Right To Deny Women Contraception Coverage

BUT all that concern about individual rights was trashed when it came to Florida’s Right to Try law last month.Basically, here’s what happened:

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???

See what I mean about the hypocrisy?
Continue reading

The UC-Davis Stem Cell Ethics Conference, Part Eight: A Profile in Courage

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

The UC-Davis Ethics Conference, Part 7: The Mystery Man Revealed!

At the end of Part Six, we were finally about to learn the identity of the mystery man who’d spoken up at Tim Caulfield’s lecture the night before… and in Part Seven, we finally do…
+++
Continue reading

UC-Davis Stem Cell Ethics Conference: Part Six, The Amazing Paul Knoepfler

Hey, all! Yep, today our story continues. When we left off at the end of Part 5, UC-Davis scientist and stem cell blogger extraordinaire, Paul Knoepfler, was about to take the stand to speak… and here he is. There’s also a teaser at the end for a BIG surprise tomorrow, in Part Seven…
+++
“The FDA’s mission is to assist safety and efficacy and speed innovations,” Paul Knoepfler said in a soft voice. “The issue is getting the two to mix. Believe me, I do realize that a lot of people see this as an issue. But the thing is, no other regulatory body oversees stem cell medications in the U.S. And in the past, various drug mistakes have hurt or killed people. There’s no way around that. Thalidomide is a good example.”

Oh, please, please don’t show any slides of deformed babies, I silently prayed.

Whether it was because he’d read my mind or not, none of those were shown. I knew what had happened in the late 1950’s with thalidomide, a drug originally used as a mild sedative and sleeping pill. It was also given to pregnant women to lessen morning sickness, with tragic, unforgivable results. But what I hadn’t known was that the FDA had not approved the drug in the US, despite considerable business pressures at the time. Thalidomide had been marketed and sold in the rest of the world, starting in Germany. It was one of the most widely prescribed drugs of any kind in that era. If I hadn’t already been listening intently—which I was, of course, because this was Paul Knoepfler—then that was a fact that would have made me sit up and pay attention.
Continue reading

UC-Davis Stem Cell Ethics Conference: Part Five

Hey all,

So… we’re done with the raw notes for now, and we’re back to the writing! Believe me, you do NOT want to miss the info in today’s installment. If you’ve ever wondered whether or not you should keep your investments in a certain biotech company, for instance… the answer’s here. Enjoy!
+++
PART FIVE.
Continue reading

UC-Davis Stem Cell Ethics Conference, Part 4

So here it is, y’all– the fourth installment! This is the LAST “notes from raw slides” section, SO please keep hanging in there… because this is important. Reading these notes may not the most entertaining activity on earth; believe me, I know. (I had to transcribe them from horrible blurry pics!) But there’s a lot to be gleaned here. If you’ve ever wondered how a drug goes from concept to market, this is one you want to read. (Just go down to Slide 9.)

***
THE NEXT SPEAKER AT THE UC-DAVIS CONFERENCE…
Continue reading

UC-Davis Stem Cell Ethics Conference, Part 3

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.
Continue reading

The UC-Davis Stem Cell Ethics Conference, Part One

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…
Continue reading

UC-Davis Stem Cell Ethics Conference On Feb 12th

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)