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Archive for December, 2008

THREE WOMEN WARRIORS

THREE WOMEN WARRIORS

“…and the female of the species is more deadly than the male…”—Rudyard Kipling

I don’t know about the “deadly” part, but I have been fortunate indeed to have worked with a great many strong women: Gloria, of course, who brightens my life every day with her power and wisdom; Karen Miner, whose endless willingness to work is a continual nudge to anyone tempted to get lazy; and my sister Patty, gone now, but an early pioneer in the computer science field, and a person who could always find the good in every one.

Today, I would like to give a small shout-out to three dedicated advocates: film-maker Jessica Gerstle, martial artist Jennifer Longdon, and Rayilyn Lee, fighter extraordinaire.

The movie-maker first: here is your official invitation from Jessica Gerstle.

SAVE THE DATE
One Night Only!

A special screening of
The Accidental Advocate
Thursday, January 15, 2009
@ 7 PM
Embarcadero Cinema
One Embarcadero Center
San Francisco, CA

After a bicycle accident left Dr. Claude Gerstle paralyzed from the neck down, he and his daughter Jessica discover hope in stem cell research. The Accidental Advocate is a wheelchair odyssey of a father and daughter tracking down the leading stem cell scientists, politicians, crusaders and nay-sayers, in order to understand the promise of stem cell research and why a political quagmire is stalling a cure.

The Director of the film will be in attendance for a Q&A after the screening.

The Film premiered at the Democratic and Republican Conventions as part of the Impact Film Festival. You can read more about the film at http://www.theaccidentaladvocate.com

*Tickets will be available through the theatre website after January 5th

Dear Don,
Happy Holidays!
I have organized a roll out of The Accidental Advocate, my documentary about the stem cell debate, which I am calling “One Night Only!”

This January, for One Night Only, The Accidental Advocate will be shown in theaters across the country and at rehabilitation hospitals. As you know, President-elect Obama has indicated that advancing stem cell research will be a priority for his Administration, and we expect him to act quickly through an Executive Order and Congressional legislation after the inauguration. But this does not inform the public about the issues and will certainly re-ignite the controversy. The Accidental Advocate’s nationwide coordinated screening is timed to engage audiences and policymakers to support effective stem cell policy, and to pre-emptively refute the opposition’s inflammatory rhetoric and attempts to confuse the public.

Showing the film in 15 cities at once will add to the informed debate about this country’s emerging healthcare crisis and the future of regenerative medicine. My goal is to pack the theaters with politically intelligent audiences including patient advocates, scientists, politicians, researchers, doctors, and religious leaders, who are familiar with grassroots advocacy and the stem cell debate. Please share this announcement with the local chapters of disease organizations like JDRF, ALZ, PAN or Hadassah or research and medical hospitals that would send out the press release and invite. The national headquarters have already put me in touch with many of the chapter presidents.

The kick off screening will be on January 12th in Washington D.C. followed by a discussion panel which I will videotape and make available to host on the web. Most of the other screenings will be on the same night, January 14th, 2009 at 7pm. The other cities are: Atlanta, Baltimore, Boston, Chicago, Denver, Detroit, Houston, LA, Minneapolis, St. Louis, San Diego, Santa Fe, Seattle, Washington D.C.

Given the current economic climate, I am not asking for a donation to help us put on the event, but tickets for the screening will be $10, and will go towards the costs of the screening. The tickets will be purchased directly through the Landmark Theatre website and at the box office after January 5th.

I hope you will be able to help me publicize the screenings. Let me also know if you can help me reach out to press contacts to build interest in this event. I can provide a press kit after the holidays, but would like to begin the process of identifying solid press leads: TV, newspaper and online. From now until January 5, I am trying to get organizations to put a notification about the upcoming event on the homepage of their website and/or under the events tab. Feel free to put up the notification on your Facebook, MySpace or blog.

On January 5, advanced tickets can be purchased through the link on my website: http://www.theaccidentaladvocate.com and on the Landmark Theatres site. I will have a press release and new launch of my website with a trailer. On January 12th, we will be having a screening and panel discussion in Washington, D.C. to kick-off the week and draw in the media.

Please feel free to send out the flyer. There is a short synopsis for you at the end of the e-mail and you can read a recent review: http://blog.newsweek.com/blogs/labnotes/archive/2008/11/03/the-accidental-stem-cell-advocate.aspx or you can visit the website: http://www.theaccidentaladvocate.com.

Sincerely,
Jessica Gerstle

ABOUT THE FILM:
When Claude Gerstle, a surgeon and athlete, suffers a tragic bicycle accident that leaves him paralyzed from the neck down, he and his daughter, Jessica, discover hope in the politicized area of science called stem cells. “The Accidental Advocate” is a wheelchair odyssey of a father and daughter who track down the thinkers, the politicians, the crusaders and the naysayers in an effort to understand the promise and potential of the science and why a political quagmire is stalling a cure. By way of background, Jessica was at NBC News for 12 years, mostly producing for Dateline NBC and left the network three years ago to independently produce this documentary. She employed her dad as her correspondent and they traveled the country to meet “A” list scientists driving the research and interviewed everyone from Dr. Jamie Thomson to Michael J. Fox to Arnold Schwarzenegger. They spent time interviewing politicians on both sides of the aisle and went right into the East Room of the White House. The film premiered at the Democratic and Republican Conventions as part of the Impact Film Festival.

Our second woman warrior is Jennifer Longdon. A black belt practitioner of Tae Quan Do, Jennifer became paralyzed after being shot in the back by an unknown assailant.

Despite major health problems associated with paralysis (I was seriously afraid we were going to lose her, earlier this year) she has fought back to the advocates’ field of engagement—the endless struggle to raise funds for research for cure, in this case, the Reeve-Irvine Research Center.

Here is a letter from Jennifer about her latest adventure—complete with a press release about another martial artist, her teacher, volunteering to do a 13.1 mile wheelchair marathon with her, although he is able-bodied—check it out.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Friends,

A year ago I began a fundraising effort to personally raise $1,000 for spinal cord injury research. I challenged 10 friends to do the same. We’ve had varying levels of success.

First, thanks to those who elected to participate. Thank you to all who contributed and very special thanks to Susan & David, Kumar, Marty and Richard for reaching the goal with individual pledges. My own efforts have fallen short due in large part to a very serious illness this past spring that nearly took my life. I am fully recovered and back on track.

On January 18, 2009 I will push my first half-marathon (the PF Chang Rock and Roll Marathon), all 13.1 miles of it. It’s hard to believe that just 4 months ago, I could not push to the mail box and a trip around the block was impossible.

So I am begging for sponsors. Will you consider pledging? And, if you act now, I’ll give you the 1/10th of a mile gratis.  $5 per mile is just $65. $10 a mile is fantastic! “Flat” pledges of any amount ($25, $50, $75 or MORE) are also welcome. I am grateful for whatever you can pledge.

This has been a year of great victories and deep loss. Just days ago, another friend died a death he would not have faced if not for his spinal cord injury. The shock and grief have been a mental setback. I’ll be racing for those like Patrick who have alternatively pushed me and held me up when I could not.

Every dollar raised will go directly to the researchers at the Reeve-Irvine Research Center who work to treat and cure a host of neuro-degenerative disorders. There have been great strides made since my visit to the lab almost a year ago. I am more confident than ever that we’re on the right track.

I’ll even be so bold to say that I believe that the next 18 months will see the start of human clinical trials and breath-taking announcements as we move closer and closer to a treatment for neuro-degenerative disorders including spinal cord injury.

To contribute, either e-mail me with your pledge challenge or make a contribution here. http://jenlongdon.chipin.com/research-for-cure. I’ll update you on my results ASAP following the race on January 18th.

Contact Sr. Master Mark Kaup-Lee FOR IMMEDIATE RELEASE
602.717.827
Jennifer Longdon
602.738.1227

Area Martial Artist Sits Down For Those Who Cannot Stand Up.

Accepting the challenge of a student, Sr. Master Mark Kaup-Lee will compete in the PF Chang Rock N Roll Half Marathon in a wheelchair. A 7th degree black belt and owner of 5 area martial arts academies, Kaup-Lee was challenged by his student, Jennifer Longdon, herself paralyzed, to complete the 13.1 mile race as she will; in a wheel chair.

The pair will raise money for spinal cord injury research. Longdon, an area martial artist and student of Kaup-Lee’s sustained her spinal cord injury more than four years ago in a still-unsolved shooting. Longdon was riding in a vehicle driven by her then-fiancé, David Rueckert, when the pair was shot multiple times by an unknown assailant. Rueckert was shot in the head; Longdon was shot in the back.

Kaup-Lee was helping Longdon with her training when she groused “You think it’s so easy? You strap 50 pounds to your back and race 13 miles on your hands.” Kaup-Lee in that instant agreed. “It’s not the same for me.” Kaup-Lee explains “I have control of my balance and core muscles in a way that a paraplegic like Ms. Longdon does not. But it’s still pretty challenging.” Kaup-Lee’s first taste of the difficulty faced by those with spinal cord injuries came when he was training with Longdon one morning. “He flew up a hill while I chugged along behind. When he reached the top I told him to try it again without using his abs. It was a little more challenging the second time.” Longdon teased.

While wheel chair competitors are not, in themselves, new or noteworthy; Kaup-Lee and Longdon will not participate in the racing chair division but in the standard division. “We’ll be using regular wheelchairs weighing between 40 and 50 pounds instead of the lighter racing chairs.” Kaup-Lee explains. “Ms. Longdon cannot get in and out of the racing chair any more without assistance.”

The pair hopes to each raise $2,500 for the Reeve Irvine Research Center. Donations can be made through http://masterlee.chipin.com/research-for-cure, or http://jenlongdon.chipin.com/research-for-cure or checks made payable to Research for Cure may be sent to Lee’s Black Belt Academy, 715 W Baseline Rd Tempe, AZ 85283. Note “Lee” or “Longdon” in the memo.

And last but never least, please say hello to one of advocacy’s most dedicated fighters, Rayilin “Ray” Lee.

Have you ever read an article on line that just infuriated you? Nowadays, many articles contain comment lines, so you can respond—but that takes effort and time, and most of us leave it to somebody else.

Not Ray. Despite having a life-and-death personal battle with Parkinson’s, she takes the time to make a difference. For example: whenever I have asked readers of this column to write a letter or email to a Senator to support stem cell research, a favor I ask far too many times—I know most people will be too busy to actually respond, if I get one out ten, that is a lot, probably the best I can hope for—but always, always, Ray comes through. I know she does, because she emails me a copy of her letter.

She also answers negative attacks on the field, as below, when someone opposed our research on religious grounds, in a long letter saying among other things that scientists were ”playing God” with human lives. First, the opposition viewpoint, (which gently puts supporters of research in the company of Nazis, and suggests our afterlife destination):

“No human being ever developed from anything other than a human embryo. No human embryo ever developed into anything other than a human being. Therefore, does it matter where in its development stage we define “life” since whenever we eliminate the embryo we have definitively eliminated the human being into which it would have developed? Whether it is worth the cost of one human life to prolong the life of another should be left up to the person whose life is thus to be eliminated. And that means one had better wait a bit.

“And if one decides to go down the road of “that life is not/will not be worth living” as justification for using the embryo as a source for what could truly be miracle cures, one will find it is not so much a road as a slippery slope, at the bottom of which is eugenics in the finest traditions of Nazi ideology. You know what they say about the road to hell …” (emphasis added).

To which Ray responded:

“Blastocysts are not people.

You say, “whenever we eliminate the embryo we have definitively eliminated the human being into which it would have developed? Whether it is worth the cost of one human life to prolong the life of another should be left up to the person whose life is thus to be eliminated…”

Those of us who support embryonic stem cell research do not believe a blastocyst is a person any more than an acorn is an oak tree. Every seed does not become a plant nor does every blastocyst become a person unless the conditions of implantation and successful development until live birth occur are met. Not all seeds sprout. You cannot “ask” a blastocyst whether it is worth using it for research because it is a few microscopic undifferentiated human cells that, will NEVER, if left alone in a petri dish become anything.

What you are doing is protecting cellular human life – seeds – at the expense of actual persons whose lives have been destroyed by disease or injury and are not asking that their lives be “prolonged” but made bearable.

I can’t think of anyone who would favor destroying people for research. But cells are not people. They are potential life. ALL cells are, not just germ cells.

Are scientists playing “God” by manipulating cells? … many people believe God gave man the gift of intelligence to heal suffering…

I would suggest that if you oppose life saving research you rely solely on prayer and let the rest of us have the benefits of science.

–Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation

Three women. Three warriors. Three friends.

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Christmas Under Duress

CHRISTMAS, UNDER DURESS

by Don C. Reed

I went to my Grandson’s Christmas program last night, under duress.

Gloria, beloved wife of almost 40 years, goes to church at least once a week, without fail.

I go when forced by societal pressures, i.e. Gloria. Roman Junior goes to a Catholic school, so I go if it is something to do with him, plus the Mrs. always muscles me into a Christmas religious service of some kind or other.

Technically, I felt, I had already done my Christmas obligation.

Last week, Gloria put on a small dinner for the homeless. Our local church provides a place to sleep for about four families down on their luck. Gloria purchased multiple pizzas, sent her husband to purloin oranges off our neighbor’s tree, arranged cupcakes from a friend, made homemade guacamole dip and cut up bread strips to dip with, as well as providing bottled drinks and items of the vegetable persuasion.

I thought there would be a lot of people involved in the providing part of the dinner, but there wasn’t. It was just us.

When we came in the door, a woman looked up and said: “Did you bring the dinner?”

I thought: what if we had forgot? Would they have eaten?

There were about eight children.

One man, well-dressed, studied his shoes. Beside him were two little girls. Their hair was tied up in bows. I said hello, shook hands, he introduced his children proudly. I did not see a mom. What if I was a single parent, with two little girls to care for?

Gloria took command as usual, lining everyone up like she was in the military.

“No, just one piece of pizza till everybody gets served!”

“What, pizza again?” I heard somebody say.

The women hustled the children over, to make sure they were fed before the food was gone. They ate everything we brought and I wished there was more. Just one piece of pizza, for the main dish?

But it was something, and the Catholic Church had made it possible, encouraging parishioners like Gloria to help with food, while the Church provided shelter and also some real-life helps like job hunting assistance.

On the one hand Gloria’s church is the epitome of charity; on the other, the Pope’s narrow-minded and anti-scientific views (if listened to) would condemn millions to lives of needless suffering.

A former member of the Hitler Youth, Pope Benedict (formerly Joseph Ratzinger) may be over-reacting to his Nazi past. Probably all German-Americans are at least somewhat embarrassed about the horrible cruelties inflicted by the nation from which their ancestors sprang (I am half German on my mother’s side, her Schneider family name changed to Snyder) and the Pope makes stem cell research sound like the Nazi science of eugenics, trying for the “master race”, which is total nonsense. Trying to cure people’s misery is a whole lot different than trying to create a bunch of Hitler mini-monsters.

Have you read the Pope’s latest statement on bioethics? It is 32 pages long, and was created by a Church council which he led before becoming Pope.

If you want to read the statement, a condensed version follows. it says:
The document … expressly approved by the Holy Father, Pope Benedict XVI…is to be received by Catholics “with the religious assent of their spirit” (Dignitas personae, n. 37).

In other words, you cannot even disagree in your own mind, let alone argue about it

Stem cell research is life and death important to me.

And under the current Pope, almost every form of advanced stem cell research is forbidden.

Sure, there was a little disclaimer: “The Church, by expressing an ethical judgment on some developments of recent medical research concerning man and his beginnings, does not intervene in the area proper to medical science itself…” (emphasis added)

The truth is the Church will intervene and control exactly as much as it can get away with. In Italy, the Pope’s word is pretty much law. In the United Nations, robed priests went with Bush Administration officials to put pressure on small countries to ban Somatic Cell Nuclear Transfer (SCNT, sometimes called therapeutic cloning), trying to criminalize it throughout the world. They failed, but not through lack of trying.

From Michigan to Missouri, the Catholic Church has mounted full-force political efforts to block embryonic stem cell research.

But there was one line in the Pope’s statement, which gave me hope for the day when the Church will inevitably reconsider its stance, as it has done in the matter of x-rays, small-pox vaccine, anesthesia, and many other medical advances, initially opposed.

“…danger to the health of children could permit parents to use a vaccine which was developed using cell lines of illicit origin…”

That was a loophole, perhaps, which might one day be used to alter a mistaken policy.

Because what parent would not consider cure for a child, dying?

I remembered where my grandson got his middle name.

When Rome was four years old, he had a friend named Jacob, who was eight. Roman and he used to throw a football around, and Jacob was always patient and kind.

But he contracted leukemia, and there was no cure. His parents did the best they could for him, but the pain grew worse and worse. I visited him one time, and brought my old Marine World slide show along, and told him about the sharks and dolphins, and for a little while the lines of pain eased on his face. But then the stories ended, and the pain sank in again.

Roman told him, when he grew up, if he ever had a son, he would name him after Jacob.

After many months of struggle, Jacob told his mother, he did not want to go on any more. And she held him in her arms as he let go, and died.

Our son remembered the promise, which was how Roman Jacob Reed got his name.

I thought about a rally I attended, a march against cancer, put on by Assemblymember John Dutra, original sponsor of the Roman Reed Spinal Cord Injury Research Act, and a devout Catholic. He had let me speak at the event, and of course I spoke strongly about stem cell research, therapeutic cloning, embryonic stem cell research, how it had nothing to do with making babies and everything to do with making cures– the whole nine yards.

Afterwards, two little nuns came over to speak with me. I got a little frightened–
oh, no, I am in for it now—because how can you argue with a nun?

But the older nun said, quite firmly:

“We wanted you to know, we support the research.”

The second nun nodded, and smiled.

Like the 72% of American Catholics who support embryonic stem cell research, she had made up her own mind.

My knee was hurting, so I had to stand up for a while. We there almost an hour early, sigh… I went out in the lobby, and there were many pamphlets and brochures. I did not thumb through them, knowing if I found anything about stem cell research, I would not like it. I remembered the 32 page document, which talked about opposing research because it lessens the “dignity” of humankind—where is the dignity in loss of bowel and bladder control? Where is the dignity in losing one’s mind to Alzheimer’s?

Gloria always tells me, the Pope is a man, and people make mistakes.

But this is such a powerful man, and the mistake is so enormous!

I went and sat down again, my stomach in knots.

Then the children filed in.

And began to sing.

As a lover of music, some of it was legitimately painful to my ears. These were just regular kids, everybody in the school, and some did not quite grasp the concept of following notes. At one point I suppressed a groan and muttered something to Gloria, in what I thought was the softest of whispers. She elbowed me sharply, indicating with a jerk of her head that one of the children’s fathers was the enthusiastic cameraman directly to our left.

But then it was our grandson’s turn to walk up on stage. Roman Jacob Reed Part Two, son of our son. Roman senior was beaming in the back. Mom Terri and Jason were home taking care of our new puppy.

All the children sang. Most of the pieces (mercifully) were short.

But the music director harbored ambitions.

As I glanced at the program, I felt my eyes widen.

The last number was– the Hallelujah Chorus, from Handel’s Messiah?

Handel’s Messiah has been called the greatest piece of music in the world. It is also genuinely difficult to sing right, even for trained professionals.

I knew from experience, having massacred the piece myself, decades ago, in the choir of the church I attended before marrying Gloria. It took months of preparation and rehearsal, every one of us had a musical background– and even then we barely survived.

And these little kids—regular normal kids off the street– were going to attempt the Hallelujah Chorus?

Now. The most important two notes in that song are the first one, and the last. You have to start off STRONG– The “Haaa” in Haleluja has to be a full-throated bellow, a shout– and finish with a cutoff note that is clean and sharp, abdominal power, and control.

The conductor raised her baton—the audience held its breath—

And then it came.

“HAAA-lay-loo-ya! HAAA-lay-loo-ya!”

As if by Christmas magic, power descended on those children’s voices. It was like a second choir, and every child was caught up in the joy, faces bright as Christmas candles.

They sang the complicated parts, Halleluja, hallelujah, hall-lay-ay-loo-ya!”,
when one group sings one thing, and another group does something else, And He shall reign forever, and ev–” while a third group sings another Halleluja altogether– and every word has to be heard, and every note singularly appreciated.

They nailed it. It was plainly impossible, but they were kids and did not know it was impossible, and so they did it anyway, good and loud, going for it on every single note.

“…Hall-ayyyy—loooo-yaaaaa–!”— they cut off the last note clean and sharp, and it echoed in the hushed church.

An instant of silence—and then the roar of applause began.

For these, our voices of the future.

May they build a church more open, to the hope of a healthier world.

Merry Christmas, everyone.

ZE08121202 – 2008-12-12
Permalink: http://zenit.org/article-24541?l=english
SYNTHESIS OF INSTRUCTION “DIGNITAS PERSONAE”

VATICAN CITY, DEC. 12, 2008 (Zenit.org).- Here is the synthesis of the instruction “Dignitas Personae” that was released today by the Congregation for the Doctrine of the Faith on certain bioethical questions. It was published in English, French, German, Italian, Spanish, Portuguese and Polish.
* * *
Regarding the Instruction Dignitas Personae
Aim
In recent years, biomedical research has made great strides, opening new possibilities for the treatment of disease, but also giving rise to serious questions which had not been directly treated in the Instruction Donum vitae (22 February 1987). A new Instruction, which is dated 8 September 2008, the Feast of the Nativity of the Blessed Virgin Mary, seeks to provide some responses to these new bioethical questions, as these have been the focus of expectations and concerns in large sectors of society. In this way, the Congregation for the Doctrine of the Faith seeks both to contribute “to the formation of conscience” (n. 10) and to encourage biomedical research respectful of the dignity of every human being and of procreation.
Title
The Instruction opens with the words Dignitas personae – the dignity of a person, which must be recognized in every human being from conception to natural death. This fundamental principle expresses “a great ‘yes’ to human life and must be at the center of ethical reflection on biomedical research” (n. 1).
Value
The document is an Instruction of a doctrinal nature, published by the Congregation for the Doctrine of the Faith and expressly approved by the Holy Father, Pope Benedict XVI. The Instruction therefore falls within the category of documents that “participate in the ordinary Magisterium of the successor of Peter” (Instruction Donum veritatis, n.18), and is to be received by Catholics “with the religious assent of their spirit” (Dignitas personae, n. 37).
Preparation
For several years, the Congregation for the Doctrine of the Faith has been studying new biomedical questions with a view to updating the Instruction Donum vitae. In undertaking the examination of such new questions, the Congregation for the Doctrine of the Faith “has benefited from the analysis of the Pontifical Academy for Life and has consulted numerous experts with regard to the scientific aspects of these questions, in order to address them with the principles of Christian anthropology. The Encyclicals Veritatis splendor and Evangelium vitae of John Paul II, as well as other interventions of the Magisterium, offer clear indications with regard to both the method and the content of the examination of the problems under consideration” (n. 2).
Intended recipients of the document
The Instruction is meant for “all who seek the truth” (n. 3). Indeed, in presenting principles and moral evaluations regarding biomedical research on human life, the Catholic Church “draws upon the light both of reason and of faith and seeks to set forth an integral vision of man and his vocation, capable of incorporating everything that is good in human activity, as well as in various cultural and religious traditions which not infrequently demonstrate a great reverence for life” (n. 3).
Structure
The Instruction has three parts: “the first recalls some anthropological, theological and ethical elements of fundamental importance; the second addresses new problems regarding procreation; the third examines new procedures involving the manipulation of embryos and the human genetic patrimony” (n. 3).
First Part:
Anthropological, Theological and Ethical Aspects of Human Life and Procreation
The two fundamental principles
“The human being is to be respected and treated as a person from the moment of conception; and therefore from that same moment his rights as a person must be recognized, among which in the first place is the inviolable right of every innocent human being to life” (n. 4). “The origin of human life has its authentic context in marriage and in the family, where it is generated through an act which expresses the reciprocal love between a man and a woman. Procreation which is truly responsible vis-à-vis the child to be born must be the fruit of marriage” (n. 6).
Faith and human dignity
“It is the Church’s conviction that what is human is not only received and respected by faith, but is also purified, elevated and perfected” (n. 7). God has created every human being in his own image, and his Son has made it possible for us to become children of God. “By taking the interrelationship of these two dimensions, the human and the divine, as the starting point, one understands better why it is that man has unassailable value: he possesses an eternal vocation and is called to share in the trinitarian love of the living God” (n. 8.).
Faith and married life
“These two dimensions of life, the natural and the supernatural, allow us to understand better the sense in which the acts that permit a new human being to come into existence, in which a man and a woman give themselves to each other, are a reflection of trinitarian love. God, who is love and life, has inscribed in man and woman the vocation to share in a special way in his mystery of personal communion and in his work as Creator and Father… The Holy Spirit who is poured out in the sacramental celebration offers Christian couples the gift of a new communion of love that is the living and real image of that unique unity which makes of the Church the indivisible Mystical Body of the Lord Jesus” (n. 9).
The Church’s Magisterium and the legitimate autonomy of science
“The Church, by expressing an ethical judgment on some developments of recent medical research concerning man and his beginnings, does not intervene in the area proper to medical science itself, but rather calls everyone to ethical and social responsibility for their actions. She reminds them that the ethical value of biomedical science is gauged in reference to both the unconditional respect owed to every human being at every moment of his or her existence, and the defense of the specific character of the personal act which transmits life” (n. 10).
Second Part:
New Problems Concerning Procreation
Techniques for assisting fertility
Among the procedures which respond to problems of fertility are the following:
“techniques of heterologous artificial fertilization” (n. 12): that is, “techniques used to obtain a human conception artificially by the use of gametes coming from at least one donor other than the spouses who are joined in marriage” (footnote 22). “techniques of homologous artificial fertilization” (n. 12): that is, “the technique used to obtain a human conception using the gametes of the two spouses joined in marriage” (footnote 23). “techniques which act as an aid to the conjugal act and its fertility” (n. 12). “techniques aimed at removing obstacles to natural fertilization” (n. 13). “adoption” (n. 13).
Techniques are morally permissible if they respect: “the right to life and to physical integrity of every human being”, “the unity of marriage, which means reciprocal respect for the right within marriage to become a father or mother only together with the other spouse” and “the specifically human values of sexuality” (n. 12), which require that the procreation of a new human person come about as a result of the conjugal act specific to the love between a husband and wife.
Therefore, “techniques which act as an aid to the conjugal act and its fertility are permitted” (n. 12). In such procedures, the “medical intervention respects the dignity of persons when it seeks to assist the conjugal act either in order to facilitate its performance or in order to enable it to achieve its objective once it has been normally performed” (n. 12). “Certainly, techniques aimed at removing obstacles to natural fertilization… are licit” (n. 13). “Adoption should be encouraged, promoted and facilitated so that the many children who lack parents may receive a home… In addition, research and investment directed at the prevention of sterility deserve encouragement (n. 13).
In vitro fertilization and the deliberate destruction of embryos
The experience of recent years has shown that in all techniques of in vitro fertilization “the number of embryos sacrificed is extremely high” (n. 14). Even in the most technically advanced centers of artificial fertilization, the number is above 80% (cf. footnote 27). “Embryos produced in vitro which have defects are directly discarded”; a increasing number of couples “are using artificial means of procreation in order to engage in genetic selection of their offspring”; of the embryos which are produced in vitro “some are transferred into the woman’s uterus, while the others are frozen”; the technique of multiple transfer in which “the number of embryos transferred is greater than the single child desired, in the expectation that some embryos will be lost… implies a purely utilitarian treatment of embryos” (n. 15).
“The blithe acceptance of the enormous number of abortions involved in the process of in vitro fertilization vividly illustrates how the replacement of the conjugal act by a technical procedure…leads to a weakening of the respect owed to every human being. Recognition of such respect is, on the other hand, promoted by the intimacy of husband and wife nourished by married love… In the face of this manipulation of the human being in his or her embryonic state, it needs to be repeated that God’s love does not differentiate between the newly conceived infant still in his or her mother’s womb and the child or young person, or the adult and the elderly person. God does not distinguish between them because he sees an impression of his own image and likeness.. Therefore, the Magisterium of the Church has constantly proclaimed the sacred and inviolable character of every human life from its conception until its natural end” (n. 16).
Intracytoplasmic sperm injection (ICSI)
Intracytoplasmic sperm injection is a variety of in vitro procreation in which fertilization in the test tube does not simply “take place on its own, but rather by means of the injection into the oocyte of a single sperm, selected earlier, or by the injection of immature germ cells taken from the man” (footnote 32).
This technique, which is morally illicit, causes a complete separation between procreation and the conjugal act” (n. 17). It takes place “outside the bodies of the couple through actions of third parties whose competence and technical activity determine the success of the procedure. Such fertilization entrusts the life and identity of the embryo into the power of doctors and biologists and establishes the domination of technology over the origin and destiny of the human person” (n. 17).
Freezing embryos
“In order to avoid repeatedly taking oocytes from the woman’s body, the process involves a single intervention in which multiple oocytes are taken, followed by cryopreservation of a considerable number of the embryos conceived in vitro. In this way, should the initial attempt at achieving pregnancy not succeed, the procedure can be repeated or additional pregnancies attempted at a later date” (n. 18). The freezing or cryopreservation of embryos “refers to freezing them at extremely low temperatures, allowing long term storage” (cf. footnote 35).
“Cryopreservation is incompatible with the respect owed to human embryos; it presupposes their production in vitro; it exposes them to the serious risk of death or physical harm, since a high percentage does not survive the process of freezing and thawing; it deprives them at least temporarily of maternal reception and gestation; it places them in a situation in which they are susceptible to further offense and manipulation” (n. 18).
With regard to the large number of frozen embryos already in existence the question becomes: what to do with them? All the answers that have been proposed (use the embryos for research or for the treatment of disease; thaw them without reactivating them and use them for research, as if they were normal cadavers; put them at the disposal of infertile couples as a “treatment for infertility”; allow a form of “prenatal adoption”) present real problems of various kinds. It needs to be recognized “that the thousands of abandoned embryos represent a situation of injustice which in fact cannot be resolved. Therefore, John Paul II made an “appeal to the conscience of the world’s scientific authorities and in particular to doctors, that the production of human embryos be halted, taking into account that there seems to be no morally licit solution regarding the human destiny of the thousands and thousands of ‘frozen’ embryos which are and remain the subjects of essential rights and should therefore be protected by law as human persons” (n. 19).
The freezing of oocytes
“In order avoid the serious ethical problems posed by the freezing of embryos, the freezing of oocytes has also been advanced in the area of techniques of in vitro fertilization” (n. 20).
In this regard it needs to be stated that while the cryopreservation of oocytes is not in itself immoral, and is employed in other medical contexts which are not the subject of this document, when it takes place “for the purpose of being used in artificial procreation” it is “to be considered morally unacceptable” (n. 20).
The reduction of embryos
“Some techniques used in artificial procreation, above all the transfer of multiple embryos into the mother’s womb, have caused a significant increase in the frequency of multiple pregnancy. This situation gives rise in turn to the practice of so-called embryo reduction, a procedure in which embryos or fetuses in the womb are directly exterminated” (n. 21).
“From the ethical point of view, embryo reduction is an intentional selective abortion. It is in fact the deliberate and direct elimination of one or more innocent human beings in the initial phase of their existence and as such it always constitutes a grave moral disorder” (n. 21).
Preimplantation diagnosis
“Preimplantation diagnosis is a form of prenatal diagnosis connected with techniques of artificial fertilization in which embryos formed in vitro undergo genetic diagnosis before being transferred into a woman’s womb. Such diagnosis is done in order to ensure that only embryos free from defects or having the desired sex or other particular qualities are transferred” (n. 22).
“Unlike other forms of prenatal diagnosis…, diagnosis before implantation is immediately followed by the elimination of an embryo suspected of having genetic or chromosomal defects, or not having the sex desired, or having other qualities that are not wanted. Preimplantation diagnosis…is directed toward the qualitative selection and consequent destruction of embryos, which constitutes an act of abortion… By treating the human embryo as mere ‘laboratory material’, the concept itself of human dignity is also subjected to alteration and discrimination…Such discrimination is immoral and must therefore be considered legally unacceptable…” (n. 22).
New forms of interception and contragestation
There are methods of preventing pregnancy which act after fertilization, when the embryo is already constituted.
“Such methods are interceptive if they interfere with the embryo before implantation” (n. 23); for example, the IUD (intrauterine device) and the so-called ‘morning-after pills’ (footnote 42). They are “contragestative if they cause the elimination of the embryo once implanted” (n. 23); for example, the pharmaceutical known commercially as RU-486 (footnote 43).
Even if such interceptives may not cause an abortion every time they are used, also because conception does not occur after every act of sexual intercourse, it must be noted, however, that “anyone who seeks to prevent the implantation of an embryo which may possibly have been conceived and who therefore either requests or prescribes such a pharmaceutical, generally intends abortion”. In the case of contragestatives “what takes place in reality is the abortion of an embryo which has just implanted… the use of means of interception and contragestation fall within the sin of abortion and are gravely immoral” (n. 23).
Third Part:
New Treatments which Involve the Manipulation of
the Embryo or the Human Genetic Patrimony
Gene therapy
Gene therapy commonly refers to “techniques of genetic engineering applied to human beings for therapeutic purposes, that is to say, with the aim of curing genetically based diseases” (n. 25).
Somatic cell gene therapy “seeks to eliminate or reduce genetic defects on the level of somatic cells” (n. 25). Germ line cell therapy aims “at correcting genetic defects present in germ line cells with the purpose of transmitting the therapeutic effects to the offspring of the individual” (n. 25).
From the ethical point of view:
Procedures used on somatic cells for strictly therapeutic purposes “are in principle morally licit…Given that gene therapy can involve significant risks for the patient, the ethical principle must be observed according to which, in order to proceed to a therapeutic intervention, it is necessary to establish beforehand that the person being treated will not be exposed to risks to his health or physical integrity which are excessive or disproportionate to the gravity of the pathology for which a cure is sought. The informed consent of the patient or his legitimate representative is also required” (n. 26). With regard to germ line cell therapy, “the risks connected to any genetic manipulation are considerable and as yet not fully controllable” and therefore “in the present state of research, it is not morally permissible to act in a way that may cause possible harm to the resulting progeny” (n. 26). ith regard to the possibility of using techniques of genetic engineering to introduce alterations with the presumed aim of improving and strengthening the gene pool, it must be observed that such interventions would promote a “eugenic mentality” and would introduce an “indirect social stigma with regard to people who lack certain qualities, while privileging qualities that happen to be appreciated by a certain culture or society; such qualities do not constitute what is specifically human. This would be in contrast with the fundamental truth of the equality of all human beings which is expressed in the principle of justice, the violation of which, in the long run, would harm peaceful coexistence among individuals… Finally it must also be noted that in the attempt to create a new type of human being one can recognize an ideological element in which man tries to take the place of his Creator” (n. 27).
Human cloning
Human cloning refers to “the asexual or agametic reproduction of the entire human organism in order to produce one or more ‘copies’ which, from a genetic perspective, are substantially identical to the single original” (n. 28). The techniques which have been proposed for accomplishing human cloning are artificial embryo twinning, which “consists in the artificial separation of individual cells or groups of cells from the embryo in the earliest stage of development… which are then transferred into the uterus in order to obtain identical embryos in an artificial manner” (footnote 47) and cell nuclear transfer, which “consists in introducing a nucleus taken from an embryonic or somatic cell into an denucleated oocyte. This is followed by stimulation of the oocyte so that it begins to develop as an embryo” (footnote 47). Cloning is proposed for two basic purposes: reproduction, that is, in order to obtain the birth of a baby, and medical therapy or research.
Human cloning is “intrinsically illicit in that…it seeks to give rise to a new human being without a connection to the act of reciprocal self-giving between the spouses and, more radically, without any link to sexuality. This leads to manipulation and abuses gravely injurious to human dignity” (n. 28).
With regard to reproductive cloning, “this would impose on the resulting individual a predetermined genetic identity, subjecting him – as has been stated – to a form of biological slavery, from which it would be difficult to free himself. The fact that someone would arrogate to himself the right to determine arbitrarily the genetic characteristics of another person represents a grave offence to the dignity of that person as well as to the fundamental equality of all people… In the encounter with another person, we meet a human being who owes his existence and his proper characteristics to the love of God, and only the love of husband and wife constitutes a mediation of that love in conformity with the plan of the Creator and heavenly Father” (n. 29). With regard to cloning for medical therapy or research, it must be said that to “create embryos with the intention of destroying them, even with the intention of helping the sick, is completely incompatible with human dignity, because it makes the existence of a human being at the embryonic stage nothing more than a means to be used and destroyed. It is gravely immoral to sacrifice a human life for therapeutic ends” (n. 30). As an alternative to therapeutic cloning some researchers have proposed new techniques which are presented as capable of producing stem cells of an embryonic type without implying the destruction of true human embryos, for example, by altered nuclear transfer (ANT) or oocyte assisted reprogramming (OAR). Doubts still remain, however, “regarding the ontological status of the ‘product’ obtained in this way” (n. 30).
The therapeutic use of stem cells
“Stem cells are undifferentiated cells with two basic characteristics: a) the prolonged capability of multiplying themselves while maintaining the undifferentiated state; b) the capability of producing transitory progenitor cells from which fully differentiated cells descend, for example, nerve cells, muscle cells and blood cells. Once it was experimentally verified that when stem cells are transplanted into damaged tissue they tend to promote cell growth and the regeneration of the tissue, new prospects opened for regenerative medicine, which have been the subject of great interest among researchers throughout the world” (n. 31).
For the ethical evaluation, it is necessary above all to consider the methods of obtaining stem cells.
“Methods which do not cause serious harm to the subject from whom the stem cells are taken are to be considered licit. This is generally the case when tissues are taken from: a) an adult organism; b) the blood of the umbilical cord at the time of birth; c) fetuses who have died of natural causes” (n. 32). “The obtaining of stem cells from a living human embryo…invariably causes the death of the embryo and is consequently gravely illicit… In this case, research…is not truly at the service of humanity. In fact, this research advances through the suppression of human lives that are equal in dignity to the lives of other human individuals and to the lives of the researchers themselves” (n. 32). “The use of embryonic stem cells or differentiated cells derived from them – even when these are provided by other researchers through the destruction of embryos or when such cells are commercially available – presents serious problems from the standpoint of cooperation in evil and scandal” (n. 32).
Numerous studies, however, have shown that adult stem cells give more positive results than embryonic stem cells.
Attempts at hybridization
“Recently animal oocytes have been used for reprogramming the nuclei of human somatic cells… in order to extract embryonic stem cells from the resulting embryos without having to use human oocytes” (n. 33).
“From the ethical standpoint, such procedures represent an offense against the dignity of human beings on account of the admixture of human and animal genetic elements capable of disrupting the specific identity of man” (n. 33).
The use of human “biological material” of illicit origin
For scientific research and for the production of vaccines or other products, cell lines are at times used which are the result of an illicit intervention against the life or physical integrity of a human being.
Experimentation on human embryos “constitutes a crime against their dignity as human beings who have a right to the same respect owed to a child once born, just as to every person. These forms of experimentation always constitute a grave moral disorder” (n. 34). With regard to the use of “biological material” of illicit origin by researchers, which has been produced apart from their research center or which has been obtained commercially, the moral requirement “must be safeguarded that there be no complicity in deliberate abortion and that the risk of scandal be avoided. In this regard, the criterion of independence as it has been formulated by some ethics committees is not sufficient. According to this criterion, the use of ‘biological material’ of illicit origin would be ethically permissible provided there is a clear separation between those who, on the one hand, produce, freeze and cause the death of embryos and, on the other, the researchers involved in scientific experimentation”. It needs to be remembered that the “duty to refuse to use such ‘biological material’ springs from the necessity to remove oneself, within the area of one’s own research, from a gravely unjust legal situation and to affirm with clarity the value of human life. Therefore, the above-mentioned criterion of independence is necessary, but may be ethically insufficient” (n. 35). “Of course, within this general picture there exist differing degrees of responsibility. Grave reasons may be morally proportionate to justify the use of such ‘biological material’. Thus, for example, danger to the health of children could permit parents to use a vaccine which was developed using cell lines of illicit origin, while keeping in mind that everyone has the duty to make known their disagreement and to ask that their healthcare system make other types of vaccines available. Moreover, in organizations where cell lines of illicit origin are being utilized, the responsibility of those who make the decision to use them is not the same as that of those who have no voice in such a decision” (n. 35).

(end—DR)

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STEM CELL RESEARCH MAY SOLVE THE ECONOMIC MELTDOWN

As President-elect Obama takes office, he will, of course, reverse the Bush prohibitions on stem cell research. That is the right thing to do, in a country built on freedom.

But then the real fight will begin—about funding. President-Elect Obama pledged to double NIH funding, from $28 billion to $56 billion a year. We must, at minimum, hold him to that promise.

But, because of the economic crisis, some legislators will argue, America “can’t afford” serious funding for stem cell research.

This is exactly backward. We must invest—massively—in regenerative medicine, precisely because of the meltdown.

Let me prove this.

Does anyone disagree that medical costs are a gigantic causative factor in the current economic crisis?

It is just common sense. What is the number one cause of people losing their homes? The inability to pay healthcare costs.

Experts may disagree on the number of bankruptcies caused by inability to pay health care costs (American Association of Retired Persons, AARP, estimates
1.85 million families are affected), but by any estimate, the financials are staggering.

Here are some gigantic numbers.

1. $2.3 trillion direct health care costs in 2007. (1)

2. $2 trillion indirect costs (time lost from work,etc.) minimal estimate (2)

3. Total medical cost: $4.3 trillion.

4. Total federal income taxes for last year: $1.8 trillion.(3)

Round off those figures, for the sake of argument.

Federal income tax– two trillion.

Medical debt—four trillion.

Unless you know a way to subtract four trillion from two trillion, the entire federal income tax receipts could not pay our health care costs.

Think of that. If we gave the military nothing, shut down every federally-funded institution and program, and gave every federal income tax dollar to health care—we could pay less than half of our nation’s medical bills.

Why is it so expensive? People are living longer lives, and not getting well from their diseases and disabilities. Three quarters of all medical costs come from chronic (incurable) diseases and disabilities. (4) Since we cannot cure them, we have no choice but to maintain them in their misery. These are our loved ones; we must do right by them.

But– if we cure just one disease, we lower health care costs by many billions. When the vaccine for polio was found (through very controversial research, strenuously opposed by conservative religion) we saved $30 billion dollars every year, not to mention saving lives, and easing suffering. Not only did we save that money, but we also gained move, because people who did not have polio could be productive additions to our society, giving us the benefit of their labors, and contributing to our tax revenues, instead of taking. Cure made them a financial asset, not an expense—and saved their lives.

Doubling the NIH budget is the least we can do, if we are solve our economic crisis.

So, get ready for the argument, folks. On its successful outcome depends the lives of our loved ones, and the financial wellbeing of our nation.

1. National Coalition on Health Care document: Poisal, J.A., et al, Health Spending Projections Through 2016: Health Affairs, 21 February 2007, w242-253

2. Estimate extrapolated from: Benefits of Research and the Role of NIH, Executive Summary, U.S. Senate Joint Economic Committee, 2000: cited indirect health care costs were substantially higher than direct costs in 1999: $1.3 trillion direct, $1.7 trillion indirect. While I have no reason to suspect this proportion changed since then, I chose a significantly lower figure to err on the side of caution.

3. $1,366, 241, 000,000 personal: $395,536 billion corporation. Source: IRS: Tax Stats at a Glance

4. “Medical care costs of people with chronic diseases account for more than 75% of the nation’s $2 trillion medical care costs (2005 figure-DR)”—Dept. Health and Human Services, Center for Chronic Disease Prevention and Health Promotion.

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CALIFORNIA STEM CELL PROGRAM STUDIED BY EFFICIENCY PROGRAM: First Hearing Report

 

“Be then as adversaries in law: strive mightily, but eat and drink as friends.” –William Shakespeare.

 

 

November 20th was the first hearing in the Little Hoover Committee process, beginning an in-depth study of California’s stem cell program.

 

How did I feel about it? Probably the way a survivor of the Titanic shipwreck might feel, if he was out on the ocean again, and sees an iceberg, just ahead.

 

First, by way of background, Senate Bill 1565 (Kuehl/ Runner) asked the Little Hoover Commission (LHC, an efficiency organization) to study the California stem cell program: to see (among other things) if the governing board of experts was a conflict of interest. For instance, there were representatives of colleges on the board; although they were not allowed to vote on money which would go to their college, did their presence on the voting board make it automatically corrupt?

 

The California court system had already spoken on that issue, saying:

 

“…by approving Proposition 71, the voters have determined that the advantages of permitting particularly knowledgeable persons to decide which research projects to fund outweighs any concerns that these decisions may be influenced by the personal or professional interests of those members, so long as those members did not participate in any decision to award grants to themselves or to their employers.”

 

SB 1565 had been vetoed by Governor Arnold Schwarzenegger, but the Little Hoover Commission was going ahead anyway.

 

They have the power to do that, because, (like the California stem cell program itself), the LHC is both part of the government, and also set up in such a way as to shield it from changing political winds. To do its job, each agency must maintain a high level of independence.

 

Thirteen commissioners now have the power to not only study and criticize, but also to suggest changes in the greatest stem cell program in the world—and offer laws to make those changes mandatory.

 

As I sat in the back of room 4203 of the Capitol building, I thought of all the attacks California’s program has had to weather, to get where we are today.

 

Remember the endless assaults on stem cell research: from the Bush Administration, the Republican party, the religious right, and anti-tax forces. One law was actually passed in the GOP-controlled U.S. House of Representatives to put advanced stem cell research scientists in jail for ten years and fine them a million dollars– a law President Bush  promised to sign if it reached his desk—and which was only blocked after tremendous battles in the United States Senate. That law was proposed four times.

 

California’s stem cell program, voted into power four years ago, has only been allowed to operate for about 20 months, delayed by a lawsuit from ideological and anti-tax groups.

 

We were only able to go forward when Governor Arnold Schwarzenegger authorized a state loan, funds to operate with until the lawsuits were decided in our favor. At last, the California Institute for Regenerative Medicine (CIRM) was allowed to begin to fund stem cell research—accompanied by a seemingly endless stream of what I regard as anti-CIRM legislation, so many different laws to limit our program it was hard to keep track of them all, not to mention numerous audits, reviews, and investigations.

 

Despite that ocean of icebergs, California’s stem cell ship of state had advanced—and now we faced what might be our greatest threat.

 

The first two speakers were Michael Klausner, Professor of Law, Stanford Law School, and Ken Taymor, Executive Director, Berkeley Center for Law, Business, and the Economy. I knew Ken Taymor; he comes to most of the meetings: great big tall guy, looks like a basketball player.

 

Their testimony was primarily technical, and advisory.

 

Mr. Klausner said a large decision-making board (the ICOC has 29 members) is automatically less efficient because of its size.

 

I wondered how he felt about the United States Senate (100 members) or the U.S. House of Representatives (435 members).

 

Ken Taymor stated that (with exceptions) the California Institute for Regenerative Medicine had done an exemplary job on transparency: keeping the public informed, and allowing involvement.

 

Both men were questioned exhaustively by the committee, given every chance to say exactly what they wanted to say. For instance, after Taymor made the “exemplary” statement, the question came:

 

What do you mean, the ICOC did an exemplary job of informing the public, and then you immediately point out an instance where important scientific deliberations are held in secret—is that not a contradiction?

 

Taymore’s answer: That tension describes the situation. On the one hand the public is welcome to the overwhelming majority of meetings; on the other, the scientific advisory board does hold portions of its meetings “in camera” (private).

 

There was a lot like that, complicated questions and difficult answers.

 

Then came the critics: John Simpson, Director, Stem Cell Oversight and Accountability Project, Consumer Watchdog: and Jesse Reynolds, Director, Project on Biotechnology in the Public Interest, Center for Genetics and Society.

 

Both men called for major changes in our program. They asked for a reduction in the leadership board, (the ICOC) that it should be reduced from its present 29 members to 15, and that all representatives of a university or research institute should be removed, or at least not allowed to vote.

 

They asked that our stem cell program be put under the control of another state agency, with hire and fire powers over the board, and the authority to take our funds away.

 

Our hard-won stem cell research money could be spent somewhere else??? 

 

Mr. Reynolds said:

 

 “…the special funds for the CIRM should no longer be allocated in a manner isolated from the budget review process… the large, untouchable set-aside for stem cell research is out of place during these difficult times.”

 

John Simpson said he had not yet made up his mind on that issue (allowing our funds to be removed), but felt it should be considered.

 

Both men commented that as President Obama had pledged to remove the Bush restrictions, and to double the NIH budget, there would now be plenty of money. (Hold that thought, please).

 

But then I noticed something: small but important.

 

One member asked Mr. Simpson if one of the reforms he suggested was practiced by the National Institutes of Health. There was a substantive pause, after which Simpson answered honestly.

 

“No”.

 

Something clicked in my worrying brain.

 

The Commission was not automatically buying the objectors’ case.

 

One of the critics talked about putting the California stem cell program under a separate agency– but the Chair pointed out that would require a Constitutional amendment. (Which did not mean it was impossible, but more difficult than a simple legislative change.)

 

It felt like they were really trying to understand the situation.

 

I have testified at hearings when the members had their minds made up, and were just going through the motions; this was different.

 

The next two speakers were Susan V. Bryant, Vice Chancellor for Research, University of California, Irvine, and member of the Independent Citizens Oversight Committee (ICOC), and Ralph O’Rear, Vice President, Facilities and Planning, Buck Institute for Age Research;

 

Remember that statement earlier about how there was going to be plenty of money from the Federal Government for research, now that a more understanding President was coming aboard?

 

Ms. Bryant pointed out, even if President-elect Obama doubled the NIH funding, (which must be done—DR) that would only raise the money available to embryonic stem cell research from $40 million to $80 million—no substitute for California’s roughly $300 million a year.  

 

 Ralph O’Rear talked about new companies opening up in California, and young scientists were able to find funding in the Golden State. He said that since Prop 71, scientists were no longer afraid of stem cell research because of political worries, but were instead excited about the new possibilities.

 

He contrasted that with the sad situation at the NIH where five years of flat funding has meant more and more caution about giving grants, which favors the older and established scientist–  the average age of a scientist getting a major NIH grant is now about forty-three years old, dashing the hopes of young researchers. This must change, and California is part of the needed improvement.

 

Then it was the turn of Robert Klein, Chairperson, Independent Citizens Oversight Committee and Alan Trounson, President of the California Institute for Regenerative Medicine. 

 

Why was there such a large board?

 

Many specialized viewpoints were needed.

 

What would he (Bob) do differently, if he had to re-write Prop 71 again?

 

Bob asked to confer with the ICOC on that one. It was such an important question, he said. It was his style to lead by consultation.

 

I remembered all the meetings he chaired, and how nothing was decided until everyone—public as well as board member—had ample opportunity to say their say. This was why more decisions passed unanimously, or close to it, because they worked carefully and inclusively.

 

Chairman Daniel Hancock of the LHC asked Bob Klein if he had “benefited personally in any way” from his work as Chair.

 

Bob said no.

 

Then, when Mr. Hancock indicated he wanted more information, the chairman of the ICOC gave a more full answer:

 

If my memory serves, Bob said he had donated $6.5 million to the campaign to pass Proposition 71. He held no stem cell or biomedical/life science stocks, having voluntarily divested himself of anything like that, when he took the job as chair. He worked without a salary for the first four years, but that would have to change, in the economic times at present.

 

But for me the most telling point was that Bob (a real estate man) had written and helped implement the California Housing Finance Authority, which provides loans for low income housing. Klein’s own company develops low income housing, which would seem to be an automatic conflict of interest. He could have used his knowledge and position to benefit his company and himself– but in all the decades of that program’s existence, he had never taken a single grant or loan from it.

 

Questions flew, and at last came one I was waiting for:

 

“Did I hear correctly, that the ICOC leveraged $272 million of taxpayer money– into $1.15 billion in purchasing power?” said Little Hoover Chairman Daniel W. Hancock.

 

Bob said yes:  by requiring matching funds from institutions wanting facilities grants (buildings and equipment) an additional $880 million had been brought to the table.  

 

And then—did my ears deceive me? The chair said something like:

 

“That’s A+ work on leveraging. It will be good to study this public/ private partnership. It might be a good test case for how the state might work.”

 

He asked Bob to write more about leveraging and how it worked.

 

There was a lot more—Bob said how even a small improvement in the costs of treatment for a few incurable diseases would pay for the whole program. Trounson added that the main payment is cures for our loved ones.

 

What about the international cooperation with Japan that was just announced? President Trounson answered, talking about the growing number of countries—countries!—that are entering into research agreements with California, bringing hundreds of millions of more research dollars to add strength to our efforts.

 

Regulations? The California system has an unprecedented level of oversight, exceeding National Institutes of Health standards in many cases, and our standards are held up as examples to imitate.

 

Was the board “hamstrung” by absences, and an inability to find a quorum, as the critics implied?

 

Bob mentioned that one ICOC member’s child has autism, and that it is sometimes very difficult to get to meetings; also, some of our patient advocates for disease have that condition themselves, and health issues get in the way. But a new policy was being worked out where a small number of members could be allowed to telephone in to meetings. (That policy, consideration for which was begun in August, has since been approved.) Even so, there had been a quorum at all 30 of the major ICOC meetings.

 

To me, the real answer is the action accomplished, that decisions were made and funds were awarded, so the researchers could to do the most important work of their lives– that is a decidedly un-hamstrung ICOC.

 

Both men spoke about the continuing need for cooperation with Assembly and Senate in Sacramento: pointing out that our legislators’ input has helped shape California’s stem cell research policies, every step of the way.

 

He mentioned the hoped-for human trials on embryonic stem cell therapy for spinal cord injury—I wanted to raise my hand and say, “Originally funded by the Roman Reed Act, named after my son!”—but restrained myself, with some difficulty.

 

Speaking on behalf of the patient advocates were Judy Roberson, Herb Meyer, Susan Rocci and Raymond Barglow—each brought a different perspective to the issue at hand. Each was an effective speaker for our cause.

 

Karen Miner did not come because her wheelchair broke.

 

Bill Remak was ready to come, but in our conversation about travel arrangements, he mentioned that last week he had broken both collarbones in a car crash. I said no, Bill, even for you, there has to be limits.

 

But he sent a letter of public testimony anyway, saying, in part:

 

…We feel that the intent and language of proposition 71 clearly defined the purpose of the program and created a transparent system where the consumers of successful outcomes from the investments in research would have a voice, thus keeping separate any political influence from having an impact on the decision making of the committee…

 

We do not wish to see this changed in any way.

 

…As a member of consumer and disease organizations that represent a constituency of over 16 million Californians, I respectfully ask the Commission to reject any recommendation that will suggest a change in the mandate and governance that already exists.
 

Sincerely,
 

Bill Remak, B.Sc. MT, B. Public Health, SGNA

Chairman, California Hepatitis C Task Force

Chair, National Association of Hepatitis Task Forces

Executive Committee, California Chronic Care Coalition

Board Member, FAIR Foundation 

 

My overall impression of the meeting? A huge sigh of relief.

 

The Little Hoover Commission’s investigation will be lengthy and thorough; I will be involved as much as I can. Naturally, I volunteered to serve on any committees for which I might be eligible. Anything which concerns our stem cell program is of tremendous interest to me, and I want to help, making sure our side is fully considered.

 

There will be several small meetings up and down the state in the next few months. I will let you know when they happen, (or look up Little Hoover Commission on the web, and click on CIRM meetings—you can also sign up to receive email notification) and you can attend, and be part of this important work.

 

But I think the LHC will work to make it fair. Our state has a right to be sure every dollar is carefully and wisely spent.

 

Besides, the California stem cell program should be studied, to be learned from.  If I had my way, every state would have something similar.

 

If they find areas to improve, experience shows what will happen. The ICOC will wrestle with the criticism, agonize and argue over it, and then figure a way to make change where change is needed.

 

And as the LHC takes an in-depth look at the California stem cell program,

I have a pretty good idea what they will find:

 

Something shining: which benefits California, our nation, and the world—and that is worth defending.

 

 

 

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PREVENTING THE ANTI-THANKSGIVING

PREVENTING THE ANTI-THANKSGIVING

 

 

This year’s Thanksgiving, for me, was the usual full-belly stuff-a-thon, eating too much and regretting it later—too many sit-ups ahead before I have a waistline again.

 

Question is: will next year bring an anti-Thanksgiving?  Will we look around and find things worse, so we have a lot less to be thankful for?

 

It is a time of worry now, as if the good years are all gone, and only hungry ones ahead.

 

Those fears are real, and I do not mock them.

 

But there are other possibilities, such as that we may be fumbling our way toward the best of times—in our lifetime we may find a way to solve cancer, Parkinson’s, and spinal cord injury– not only to ease suffering, but to help fix the economy, world-wide.

 

Here are some of my hopes for next year…

 

First, my Americans for Cures Foundation work. As regular readers of this column know, I work part-time for that organization, on out-of-state, federal, and international issues. (Americans for Cures Foundation, by the way, is not responsible for my opinions. When I step up to the mike in public comment time at the California stem cell meetings, or write about our state’s stem cell policies in this column, I am speaking as an individual: someone who has supported regenerative research for more than fourteen years,  including helping develop, pass, and implement the Roman Reed Spinal Cord Injury Research Act of 1999.) In the months ahead, I hope to collaborate with Americans for Cures Foundation advocates like Amy Daly and Jacqueline Hantgan  on such issues as:

 

  • Supporting the FDA as it develops safety guidelines for human embryonic stem cell clinical trials and therapies;

 

  • Strengthening our Speakers Bureau, so every state has patient advocates ready to support stem cell research;

 

  • Removing or revising the Dickey-Wicker Amendment (DWA), currently used by ideologues to block federal funding of promising forms of stem cell research.

 

Those are a few possibilities; the group will decide which ones (or others) go forward.

 

There are also ideas I hope to advance as an individual, including:

 

  • Doubling the NIH (National Institutes for Health) funding. Many folks tell me this is not a realistic goal. Since the time President-elect Obama made a campaign pledge to double the NIH budget, the nation has gone into an economic downturn.   

 

But the recession is exactly why we must increase funding for the NIH. Incurable disease is a mountain of medical debt– which is currently crushing the economy.

 

As stated by the American Association of Retired Persons, the number one cause of bankruptcy is the inability to pay medical expenses.

 

Right now, America is spending $2 trillion on direct out-of-pocket medical payments—and at least another $2 trillion on indirect costs to the economy: like people unable to work: not only are we are denied their earnings, but also we must pay their bills. So that is at least $4 trillion the nation must come up with—and can the government afford that? Our entire federal income tax receipts are only about $1 trillion.  The only way to fix this endlessly increasing debt is cure research, and that means major funding for the NIH.

 

  • Mini-Funding Research Programs What if we had tiny little stem cell research funding programs in every state? Not big expensive plans, like California or New York, but little ones, small but mighty: a million bucks a year.   

 

Such programs would help fund the state’s newest scientists–and bring in matching grants from the Feds—new money for the states.  

 

Remember the law named after my son, the Roman Reed Spinal Cord Injury Research Act (RR)? Only $1.5 million a year, this California program often funds young scientists who cannot get funded by the feds because they are new—but if their experiment is successful with our little bit of money, they can go back to NIH and ask for serious funding, because now they have a track record.  That was how Dr. Hans Keirstead was funded for the embryonic stem cell therapies being considered for human trials right now. He started small with an RR grant, succeeded, and then used that success as proof that his idea was sound—and new money came to his work, and to California.

 

Similarly, mini-programs would bring in new money to their state.  Every year the RR Act attracts matching grants from the NIH and other sources, three or four times as much. So far, the Act has spent $12.5 million in California tax dollars—and  brought in more than $50 million in matching grants from out of state.

 

What kind of progress could we make if every state in the Union was working on regenerative research? If we had 50 new stem cell scientists in every state—that would be 2500 new stem cell researchers…

 

We need that army of new stem cell researchers, and we need it now, when at last we have the freedom to do the work that must be done.

 

As success builds, so will our new American industry. Remember when our country made transportation affordable for everyone?

 

We can do it again—but this time, it could be cures instead of cars.   

 

And as we work toward such positive goals, we diminish the chances of having an

 “anti-Thanksgiving” next year.

 

 

 

 

 

 

 

 

 

 

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