----- Original Message -----
From: Wesley J. Smith
To: rayilynlee
Sent: Tuesday, January 30, 2007 3:09 PM
Subject: Re: Trust but verify
Glad to hear the trials are going to go forward. This could be very important research. I try not to use the word "cure." Indeed, I am not a scientist, but it seems to me that we know so little about the causes of afflictions like PD that it is best to speak of the potential for reg. medicine as a treatment to alleviate symptoms or maintain these afflictions as a chronic condition. Best to be safe and not raise unreasonable expectations.
I am still curious as to why Phase II has been stalled for a year and a half and it will be 2 years if resumed when he says it will. LACK OF MONEY, SUED OVER PATENTS, NOT MEETING FDA STANDARDS, CONFLICT OF INTEREST???????
I know it is difficult for patients. It is like the answers are so near, yet so far.
I DO NOT THINK ANY TREATMENT WHICH INVOLVES BRAIN SURGERY FOR WHICH ONE MUST BE AWAKE WILL EVER BE STANDARD TREATMENT BECAUSE IT IS VERY EXPENSIVE AND SOME PEOPLE ARE TOO OLD OR CAN'T TAKE IT.
This isn't a science debate, but a debate about ethics and morality. There are religious people on both sides and secular people on both sides. We all are doing the best we can, striving in a difficult area to promote the right thing.
FOR ME THERE IS NO MORAL OR ETHICAL PROBLEM. IF PEOPLE REALLY BELIEVED A BLASTOCYST WAS A PERSON THERE WOULD BE NO ARGUMENT. NO ONE IN HIS OR HER RIGHT MIND WOULD FAVOR KILLING ONE PERSON FOR ANOTHER. KIND OF LIKE SENATOR BROWNBACK'S LAW THAT BANS FETAL FARMING - IT PASSED UNANIMOUSLY AND THERE IS NO DANGER OF FETAL FARMING. THIS IS ABOUT ABORTION AND CONTROLING OTHER PEOPLE. IF YOU CAN GIVE A BLASTOCYST A SOCIAL SECURITY NUMBER, ABORTION IS GOING TO BE A LOT EASIER TO OUTLAW.
A MAJORITY OF THE AMERICAN PEOPLE, INCLUDING PEOPLE OF FAITH (EVEN ROMAN CATHOLICS) FAVOR ESCR. IN FACT, MANY OF MY FELLOW ESCR ADVOCATES ARE ROMAN CATHOLICS OR RAISED IN THAT FAITH. I HAVE ONE REPUBLICAN FRIEND WHOSE HUSBAND HAS ALZHEIMER'S WHO OBJECTS TO FEDERAL FUNDING OF ALMOST ANYTHING PERIOD. NEVERTHELESS, THE MOST POTENT OPPOSITION TO ESCR COMES FROM EVANGELICALS AND RCs.
WHAT IS DIFFICUILT IS GETTING FROM ONE ROOM TO ANOTHER, NOT ENJOYING THE LUXURY OF PHILOSOPHICAL DEBATE.
The feds are spending more on ASC research than ESCR, off the top of my head, animal/human ASC is about $200 million a year. But it is also the area where hundreds of human trials are already approved, and far beyond blood diseases. And, the difference isn't isn't due to a spending limit drawn like a line in the sand. My understanding is that there are just not enough qualified applications for more to be spent. This seems credible to me in that the first Prop 71 money is going to training, not bench research. WELL, THE DICKEY AMENDMENT IS STILL IN EFFECT IS IT NOT?
PROP 71 HAS BEEN STALLED BY LAWSUITS from the religious right. CHECK WITH DON C. REED [log in to unmask]
WHOSE SON ROMAN IS A PARALYZED QUADRIPLEGIC. DON KNOWS ALL ABOUT PROP 71 POLITICS AND RESEARCH.
I ALWAYS THOUGHT YOUR BEST ARGUMENT WAS "IF ESCR IS SO GREAT, WHY ISN'T THE PRIVATE SECTOR MORE INVOLVED?" BUT THEN THE REASON SCIENTISTS GIVE FOR LEAVING FOR THE UK, SINGAPORE OR ELSEWHERE IS THE HOSTILE UNPREDICTABLE ENVIRONMENT IN THE US FOR ESCR. I know I don't want to invest in the stock market now. Think where we might be if Bush was not President!!!!
Mr. Smith, thanks for being civil and willing to talk. I don't think we will agree on much, but I plan to read your stuff when I get time. The option of euthanasia would make life easier for me now and I don't think you really answered that guy who questioned the "specialness" of the human race, but you are special.
Ray
Take care. WJS
www.wesleyjsmith.com
----- Original Message -----
From: rayilynlee
To: Wesley J. Smith
Cc: Don C. Reed ; parkinsn ; Diane Wyshak ; idelle
Sent: Tuesday, January 30, 2007 12:57 PM
Subject: Re: Trust but verify
Thanks for the response Mr. Smith.
I talked to Turner on 3-24-06 about a year ago and he seemed down, struggling like me. He opined that Levesque's Phase II was stalled due to lack of money. A couple of weeks ago, I emailed Levesque at NeuroGeneration, a company of which he is a VP, and he told me in about 6-8 months their lab would be up to FDA standards and I guess Phase II would be a go.
I knew about all this some years ago as I called Levesque's office in the spring of 2003 to inquire about it, but was steered to DBS which I had in June and September 2003. Turner appeared before the Senate in 2004. You need to update your information about him.
What I object to is him and others being presented as "cured". During an argument about this on a blog, a person admitted that after viewing the very recent "Adult Stem Cells Nine Faces of Success" it did appear that Turner no longer had PD.
We in the PD community assumed that cell replacement did not address the underlying disease process of Turner's Parkinson's and this is a reason scientists want to study ESCs, to learn how cells behave to cause disease.
I do not have hope that I will be cured by anything. I'm 71 years old and have had PD 11 years. Everyone with this disease is different with respect to reaction to meds and progression of the disease. What my hope is, is that someday no one will ever have this or other diseases or injuries that take your life while you are still alive.
I do not oppose adult stem cell research, but neither do I object to embryonic stem cell research. I don't think we will know what treatment works for which disease until the research is done. Most opponents of ESCR have a religious objection to manipulating germ cells and they have been successful in blocking it.
Patricia Payne and her husband Richard are Roman Catholics who feel ESCR is murder. He makes religious films for the Roman Catholic Church. He has not answered my email inquiring about his wife's well-being. I don't object to their beliefs - I object to their beliefs determining the kind of science that will be pursued in this country.
Why are 518 scientific organizations, patient advocacy groups, universities and the Episcopal Church on record as supporters of ESCR and 17 right-wing theocratic groups opposed to it.
Why Prentice used the Amgen study I have no idea. But I do know people who were participants in it and they say this growth factor is great.
Perhaps you could tell me how much the feds are spending on ASCR.
I hope that in your book you note that embryonic stem cells were first identified in 1998 and you don't present Turner as cured. As a person with Parkinson's I am not grateful for the crumbs of reprieves and Turner didn't sound too enthused a year ago either, but that is just me, I have a bad attitude.
Rayilyn Brown
Surprise AZ
rayilynlee@cox..net
----- Original Message -----
From: Wesley J. Smith
To: rayilynlee
Sent: Tuesday, January 30, 2007 12:00 PM
Subject: Re: Prentice's Successes
I am aware of Dennis. I also have interviewed him and included his story in my book CONSUMER'S GUIDE TO A BRAVE NEW WORLD. He told me that there was a tremendous benefit after receiving the adult stem cell treatment, e.g., an almost complete abatement of symptoms and a hefty reduction in medications. So did Dr. Levesque. This lasted for years, permitting him to go to the South Seas and photograph great white sharks, and then to Africa on safari. He testified to that effect in front of the Senate , in 2005 I believe, and noted that he had begun to have symptoms again, but credited his remission for several years to the treatment he had received. He also wants another ASC treatment because he believes fervently that it offered him great benefit. That the treatment of one lobe may have created a remission and not a "cure" does not mean it did not offer tremendous potential benefit. That being said, of course, one patient does not an effective treatment make. Levesque was ready to undertake FDA approved human trials, and then got sued for patent violations. The suit was later withdrawn. I don't know the current status.
If ESCR appeared to put Parkinson's into remission for years, it would be hailed as a huge "success." Instead, at present, they cause tumors in mice, or as M. J. Fox referred to them, residual tissues.
I don't know of the other matters of which you write.
Meanwhile, the Feds funded human ESCR to the tune of $161 million over last five years, with $40 million in 2005 alone. When animal studies are included, the total over 5 years is about $651 million. States will be pouring in billions, along with private and philanthropic.
You should check out the work of James Kelly. He is a paraplegic from an auto accident. Formerly, he supported ESCR. Now he bitterly opposes. He believes that every dime spent in ES approaches is money not spent in the areas where the better hope lies, e.g., adult and UCB.
Thanks for writing. Let us hope that Parkinson's will eventually be controlled and cured. And you ought to take the pro ESCR arguments with as much skepticism as you are taking the adult approaches. There is a whole lot of propaganda out there, fronted by tens of millions in lobbying. Trust but verify, Rayilyn.
Good luck to you.
WJS
www.wesleyjsmith.com
----- Original Message -----
From: rayilynlee
To: [log in to unmask]
Cc: Don C. Reed ; parkinsn ; Diane Wyshak ; idelle
Sent: Tuesday, January 30, 2007 10:38 AM
Subject: Prentice's Successes
Mr/ Smith:
If you take a look at the Family Research Council's "Adult Stem Cells Nine Faces of Success" of January 2007 you will find Dennis Turner's face. What does the word "success" mean to you? This entry contains no info later than 2002 (with the except of a 2004 footnote) and it would appear Turner is enjoying African safaris. I called him on 3-24-06 and he confirmed to me that his Parkinson's had returned with a vengeance. Remember this pamphlet is current.
Also, it is not widely known that when Dr. Levesque took Turner's brain cells he did a DBS - Deep Brain Stimulation surgery. Although Dr. Levesque has stated Turner's neurostimulators were never turned ON, it would be hard for me to imagine why anyone would endure this ordeal for which you must be awake and not be turned ON to find out how well it worked. I had 2 DBSs in 2003 which control my tremors pretty well. "Success" of DBS ranges from failure to getting one's life back.
Prentice has now toned down his statements from cures to "benefits" for 60-80 diseases. Medications "benefit" most people with Parkinson's, at least for awhile until they get dyskinesias and other bad side effects. They only helped me once.
The White House also has a current publication which not only lists Turner, but also Patricia Payne, who was "going to be" a subject in Levesque's Phase II which has been stopped since July 2005. Ten unnamed people from Kentucky are cited for Amgen's aborted GDNF infusion therapy trials which had nothing to do with stem cells of ANY kind. All these folks are presented as ASC "successes"
The result of these misrepresentations has been success in stalling embryonic stem cell research by citing the superiority of adult stem cells in treating diseases. Those of us who suffer and know others who do, know that adult stem cells have been, after 50 years of research, successful in treating some blood disorders and cancers.
How many folks do you know who are being treated with adult stem cells? The real success of ASCs has been in blocking ESCR.
Rayilyn Brown
Surprise AZ
[log in to unmask]
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
