irregular times logoA Guest Commentary By Peter Welch:
Paul's Story

There is a cane in the corner of each room of our house. A blue handicap placard hangs from the rear view mirror of my twenty-two year old son's car. My wife and I talk in hushed tones out of earshot of my son about wheelchair access into and through our house. When and how will we attach an electric wheelchair carrier to the back of the car? When will his legs no longer support him even with the current help of canes and leg braces?

I still startle when I see the canes. I think of my now deceased father-in-law who had polio as a child and always had to walk with a cane afterwards.

But the canes are not my father-in-law's, they are my son's.

The same son who as a child always had the fast little legs. The same son who last year in college never rode the campus shuttle because he could get "there," wherever there was, faster on foot.

My son now has arthritis. Not the garden variety, old folks kind. Not the worn out joints kind. No, my son's own immune system is attacking his joints. He is in constant pain. He is exhausted much of the time because his immune system thinks his body is under attack (by his knee joints!) and is busy releasing chemical messengers telling him to lie down and rest as though he were sick with the flu.

Just last fall our family was discussing which grad school he would attend, not imagining that his recently sore knees were the first signs of a crippling aggressive arthritis.

But by this last spring we were not even sure he could complete his courses needed to graduate.

My son who never received less than a B in any previous high school or college course might not graduate. My son whose grades had been on track for an easy cum laude might not be able to finish his last quarter of college. He might fail his last few classes due to all the missed days at doctor's offices or lying in bed with ice packs bound to his knees to try to reduce the pain.

For the first time in his academic career, he felt lost and behind in his course work not to mention constantly exhausted from the ravages of his disease. Yet with superhuman effort he did manage to finish the classes and pass all of them. He did qualify to graduate. In fact his lowest grade was a B-. My wife and I were so proud of his courage and perseverance, although he was terribly disappointed to just miss qualifying for the cum laude.

We consoled him with pointing out how much he had overcome. To top off the victory he even was able to walk in the processional with his classmates to get his diploma. Of course, he walked slowly and painfully with his cane, but he did it.

The sad part of his autoimmune arthritis is that it does not stop. It never goes away and there is no cure for humans. The harsh medicines used to treat it may slow the progression. The medicines may extend the number of months until he is forced into a wheelchair, but they cannot stop the disease. They cannot cure it.

If only he were a mouse.

Researchers at Rockefeller University in New York City have discovered a method to stop autoimmune disease in mice. Their technique holds great promise. But to understand their breakthrough it is important to know something about the immune system.

It seems that all autoimmune diseases (over sixty kinds including allergy and asthma and just maybe male pattern baldness) have something in common with each other. The maladapted autoimmune process can be turned off by an immune cell call a T-regulatory cell. Apparently T-regs in sufficient quantities will stop any autoimmune process no matter where the autoimmune attack is occurring. People who have autoimmune disease have some T-regs, but not enough.

An autoimmune attack can occur in any part or organ of the body including but not limited to joints, the pancreas, the skin, lungs, heart, kidneys, or nerve fibers. Autoimmune diseases are given different names depending on what part of the body is being attacked--arthritis, psoriasis, sclerosis of the lungs, cardiomyopathy, lupus, multiple sclerosis.

In healthy people unaffected by auto immune disease these T-regs, made in the bone marrow, are in sufficient quantity to prevent autoimmune disease. If enough T-regs are present in the blood, no autoimmune disease is possible.

The Rockefeller University discovery announced last month was in two parts. First Rockefeller researchers developed a method to grow unlimited amounts of T-regs in lab cell cultures from T-reg samples collected from the blood of mice ill with autoimmune disease. Secondly when these lab grown T-regs were infused back into the sick mice in massive amounts, their auto immune disease was completely stopped. The mice were in effect cured (as long as they got new T-regs every once in a while).

When I first read the announcement of their success, I nearly fell off my chair. Thoughts wildly swirled through my head. "My God, they have created the magic bullet for autoimmune disease! My son will run again. No more pain! No further joints destroyed! Hallelujah! I actually shouted out loud in a pure joy.

When does human testing begin?

Well, it turns out not now. Not for a long, long time. You see the researchers at Rockefeller had to use human Embryonic Stem Cells (hESCs) to grow the T-regs. The T-regs grow and expand beautifully on a bed made of hESCs but no where else. No problem, if you are a mouse sick with an autoimmune disorder. Big political problem if you are human.

There can be no federal funding of research for a human cure. There are no suitable or safe lines of ESC's available. The 15 human embryonic stem cell lines that President Bush allows to be used are all contaminated with mouse nurse cells. These lines of cells cannot be used for human treatments because of the danger of mouse viral contamination.

(NOTE: There are not now nor ever were there seventy-eight or even sixty viable lines of hESC's claimed in Bush's August 9, 2001 speech. According to the NIH only about 15 lines were available to researchers in the US as of March 2004.)

This danger of using animal contaminated cultures is very real not only to the patient being treated but to the general population as well. Animal viruses jumping to humans are some of the most deadly known--e.g. rabies, SARS, Hantavirus, simian leukemia virus (SV40), and Asian bird flu.

The SV40 virus is the classic example of unintended consequences. It is now widespread and expanding into the human population as a result of contaminated Sabin polio vaccines grown on monkey kidney cells that were infected. No one wants that disaster repeated.

Researchers must use clean, fully human cell tissue cultures to prevent the possibility of some future epidemic.

When the President made his "Solomaic" decision three years ago, researchers did not know how to grow hESCs using cultures of purely human cells. Now they do. At that time hESC's could only be grown with mouse cells mixed in as "feeder" cells for the hESCs.

Sadly the new knowledge and the new purely human embryonic stem cell lines cannot be used because they were developed after 2001, the arbitrary cut off date chosen by George W. Bush as the last date any new stem cell lines could be developed.

Worse, the Byzantine Bush Administration federal funding regulations mean that if a researcher has any hESCs other than the "Bush Fifteen" in his lab, he must divide his lab into two halves. No equipment can be shared on both sides. Draconian penalties ensue if any federally purchased piece of equipment is ever even inadvertently used on the wrong side of the room with un-approved hESCs.

Most researchers just do not want to put up with that nonsense, so they use only animal ESCs, look for other kinds of research opportunities or leave the country entirely. There is no federal funding source for hESCs from fully human cell cultures. No ethical scientist would risk using any of the contaminated Bush Fifteen for human therapy.

So a cure for my son's autoimmune disease sits on the shelf because he is human and not animal. It is reminiscent of 19th century America when there were laws to prevent cruelty to animals but not to children. The first girl rescued from abusive parents (she had been starved, beaten, and left chained to a bed) was saved by a judicial decision to apply the Prevention of Animal Cruelty laws to that little girl at the behest of the ASPCA.

Imagine what the Fox News anchors or talk radio hosts of the time would have ranted: "Those darn liberals using the courts to legislate. Those out of control un-elected judges stepping over their judicial bounds, something ought to be done about it before they destroy America. Children are the parent's property. Only parents know what's best for their children. We should not interfere in the relationship between parent and child."

I wish my son could be similarly rescued. If only some brave judge in today's world would declare that my son has at much right to a cure as a mouse and overturn the Bush Ban. I can only dream. If only FOX News and talk radio would use their dominate political power to advocate for cures for the ill instead of exclusively using that power to support President Bush.

This hESC research holds the promise of many other potential cures in addition to autoimmune disease.

Pancreatic tissue that secretes insulin can be grown. (Good-bye juvenile diabetes.) Researchers at Washington University in St. Louis have even grown functioning kidneys that kept lab animals alive for days. (Good-bye dialysis.) It even seems that stem cells can be freeze dried and revived (Nature, 19 December 2003).

When I saw Dr. McCoy in Star Trek movie "A Voyage Home" give a pill to a dialysis patient who then grew a brand new kidney, I never imagined that I would live to see a day when that science fiction possibility could become science fact. Yet now that day is virtually here, but only if you are an animal.

What else? Researchers have connected severed spinal cords with ESCs allowing a mouse to walk again who had a spinal injury that had previously paralyzed him. (Press Release--Geron of Menlo Park, July 2003, Journal of Neuroscience-June 2003)

There's more. There is experimental evidence that contrary to all expectation, ESCs do not seem to be rejected. Pig ESCs can be used in rats to grow kidneys without any sign of rejection. No immune suppressant drugs required. Any other kind of cell transplanted into an animal even from its own sibling is rejected and killed by the host's immune system. There is proof that women who have had children carry hESC's from their children transferred across the placenta--with no rejection (Tufts University July 2004)

(NOTE: Some patients and doctors might be tempted to use animal ESC's in people but again there is that pesky xeno-virus thing. The spread of SV-40 into the greater human population that never received the oral polio vaccination puts a real ethical quash on any animal ESC's used for human cures.)

Today the cures are lying in hands of our medical researchers waiting to be grasped -- if only their hands were unbound.

There is another perhaps more promising aspect of hESC research,--genetically modified hESC's being used to find new medicines in weeks instead of decades.

It turns out that genes from the cells that cause any human disease can be transferred into hESC's (somatic nuclear transfer). The hESC's containing these disease genes can be grown in vast cultures in unlimited amounts. For the first time medications to control or cure particular diseases can be tested in diseased cells outside the body (no risk to a patient) with cells containing, not an approximation of the genes that cause a disease, but the EXACT genes.

In a matter of weeks thousands of new drug possibilities could be tested and verified as therapeutic or eliminated as not. This process would exponentially speed up and focus the search for and development of new and better medications for virtually every disease or condition that afflicts mankind.

For a few thousands of dollars, thousands potential therapeutic drugs could be tested. The same number of tests using human volunteers would take many, many decades costing more than the combined wealth of our nation. By greatly reducing research time and cost and allowing for more accurate targeting, this technique would greatly increase the safety and efficacy of new medications while shattering the ever upward spiraling cost of medications developed the old fashion way with human trials. Not to mention saving the inevitable few human test volunteers that die as a result of the testing.

Adult stem cells (somatic cells) can NOT as of yet do any of these things. They are not as "flexible" (Tissue Engineering, vol 8, p.739, Nature 3/21/04) We do not yet know the chemical signals to make them more flexible. We likely will have the knowledge of those signals sometime in the next decades. But it is not yet here. An additional problem is that adult stem cells are much more prone to causing rejection problems in patients than hESC's.

Dr. James Dobson of Focus on the Family is wrong when he says adult stem cells are currently as good as hESC's (Cspan July 2004). Wendy Wright of Concerned Women of America and Phyllis Schlafly of Eagle Forum are also wrong when they say the same thing.

No somatic (body) stem cell has ever been shown to be as useful as hESC's including those from bone marrow, fat, the pulp of baby teeth, and placentas. Dobson's and Wright's objections are religious, not scientific and certainly not moral.

After all, how moral is it to deny my son the chance to run again? How moral is it to allow kidney dialysis patients to suffer and die? How moral is it to let those with juvenile diabetes suffer loss of limb, sight, and finally their lives when we could cure them? A medical breakthrough greater than the introduction of penicillin lies in our hands and it is being denied to us by those who claim to be more moral than we are.

One of those is now the President of the United States with the concomitant power to deny access to cures for my son. His willful ignorance affects all living humans since the vast majority of the world's stem cell researchers and biotech scientists are in this country and must live by the laws and rules and regulations of our federal government which he and his fellow "moralists" control--lock, stock, and barrel.

Even if the researchers in the United Kingdom (Yahoo News 6/11/03), Australia (AP 3/11/02, Yahoo News1/28/03), China (BBC News, 11 Dec 02), Singapore or Saudia Arabia -- where hESC's research is not so limited as here, develop a human cure -- we in the United States may not have access. The chairman of the Senate Science Subcommittee, Sam Brownback-R Kansas has publicly given voice to extreme and vindictive views that would punish Americans who would seek stem cell cures elsewhere.

Thanks to the Republican Party leadership appointing him chairman of the Science Committee, Brownback has the potential power to make his nasty views into federal law. He introduced legislation into the United States Senate to jail for up to ten years and heavily fine any US citizen who left this country to get a stem cell cure (Human Prohibition Act, S1899). How moral is that?

The House of Representatives is even worse in February 2003, they voted to ban all use of embryonic stem cells even therapeutic uses by a vote of 241-155 (Human Cloning Prohibition Act of 2003). Misnamed as a ban on cloning, it was really a ban on hESC's cures. Even George R. Nethercutt (R-Washington) voted for this ban. That's significant because George Nethercutt has a daughter with juvenile diabetes. According to the National Academy of Sciences the use of hESCs for therapeutic cloning offers the best hope for finding a cure for her kind of diabetes.

When she goes blind or loses a foot and finally dies of that horrible affliction will Nethercutt be proud of himself? Will his daughter be grateful?

Courts have ruled that Jehovah Witnesses, Christian Scientists, and others religiously opposed to some or all medical advances, were NOT allowed to withhold medical treatment from their minor offspring when the child's life was in danger. Will a court step in and save George Nethercutt's daughter?

Nethercutt's thinking is so controlled by ideology over compassion that he even voted against a proposed amendment to the HCP Act of 2000 that would have allowed very limited medical research on fully human lines of hESC's under tightly controlled circumstances.

President Bush in March 2003 quoted the Pope in supporting the House's outrageous legislation banning all hESC research. Funny, given how little President Bush thinks of most of the Pope's opinions. The Pope was against the war in Iraq, but our President did not let the Pope's opinion stop or even slow his march to war. The Pope accepts that the Universe is billions of years old and evolution happens, Bush rejects both of those ideas.

I guess Bush knows when the Pope is right and when he is wrong.

Maybe they are both wrong sometimes. After all the Doctrine of Papal Infallibility is less than two hundred years old and the Republican doctrine of the Infallibility of George W. is only three years old.

But why do these supposedly moral people care if my now crippled son uses this wonderful knew discovery to become cured? Shouldn't moral people want diabetic children and adults who suffer horrible pain and death to be cured instead? Doesn't it bother their sense of fairness that Christopher Reeve is crippled but might be able to walk normally again if hESC research were allowed and funded? Their conscience is apparently clear. These same hESC cures might allow Michael J. Fox to regain complete control of his body.

Is it because Reeve and Fox are Hollywood actors and therefore "unworthy" of a cure? Or are cures forbidden simply by a non-reflective ideology that does not allow for compassion? Osama Bin Laden and his homicide pilots also were able to put aside their compassion for others for their particular "religious" beliefs and look where that got us.

The main and most oft repeated argument of the self proclaimed "moral" crowd is that destroying life to save a life is wrong, that using embryos is murder.

But is it? Hundreds of thousands of frozen embryos exist in this country right now. The vast majority will be thrown away as unneeded or unwanted due to a previous successful implantation, or simply because they are too old to be implanted.

No good will ever come from their existence. They die when they are discarded. Is that murder, too? Should we also ban all In Vitro Fertilization? Should we jail those desperate potential parents who give IVF a try?

When I was a teenager, my family camped regularly in the summers with a family we saw then. One summer when that family returned, the parents told us that their youngest daughter had recently gone into a coma and almost died. She had somehow developed severe juvenile diabetes from one summer to the next. She survived and was put on insulin and felt well enough to go camping, but she still appeared so much more frail and thin then in previous summers. She had to be very careful of what she ate -- difficult for a seven year old. I felt so sorry for her.

In the following years, she was able to figure out all the rigmarole of shots and dieting, but was never able to completely control the disease. She suffered all her life and finally died a few years ago, barely forty years old. Is her death a kind of murder if the hESC research that could have saved her was prevented?

How does the use of a few cells from a soon to be discarded, lab-grown, never in a uterus, embryo compare with her life long pain and early death? These embryos do not have any arms or legs or brain or heart. They are only the size of the head of a pin. They are made of about one hundred cells. A baby even an unborn fetus is made of not a hundred cells or not even thousands or millions or billions of cells but TRILLONS of cells. An embryo is so very much less.

A five day old human embryo looks identical to any other embryo whether from a starfish, cheetah or blue whale. Barring genetic tests no one could tell the difference among them. On the other hand, a fetus is clearly different. A fetus resembles the adult animal in everything but proportions. I am not advocating for the use of a fetus, but an embryo the size and complexity of a grain of salt.

Why does a tiny frozen speck of an EMBRYO that is soon to be trashed have more worth than my son?

How does his suffering help anyone? Which is the greater good, letting a frozen embryo be discarded or letting it be used to cure my son and thousands of others?

And only a very few embryos are needed, as hESC's can be multiplied almost indefinitely in the lab. But those hESC's must be from fully human cell cultures or the risks of xeno (animal) virus spreading widely into human populations is just too great.

What about all the failed pregnancies? The naturally fertilized eggs that do not implant and therefore die or the ones that do and spontaneous abort? By many estimates at least as many naturally fertilized embryos fail to implant (in the womb) as do implant. Spontaneous abortions of implanted embryos that are developing into fetuses happen all the time. My wife and I lost a baby that way.

Some argue that those failures are caused by defects, therefore it is a good thing they failed. Yet many failed embryos and fetuses show no anomalies at all. Is God then evil for letting them die? Should we let Senator Sam Brownback attempt to jail God for ten years for each failure?

Each time you brush your teeth, you wash hundreds (thousands?) of living cheek cells out of your mouth. Since every one of them was alive, were you immoral to brush your teeth? Did you preserve your healthy life by destroying other human life?

You might think that sounds silly and farfetched but it is a very reasonable question. Each of those cheek cells (like every other cell in your body) had all the genes and DNA necessary to form a complete new human being.

In a few more decades researchers may well be able to turn any cell of the body into an embryo*. Already U of Penn researchers have taken stem cells and created eggs (Genome News Network 5/2/03). Sometime in the future researchers will discover the complete set of chemical signals needed for the entire sequence from body cell to undifferentiated cell to stem cell to egg to embryo to therapeutic cure.**

Will we have to stop brushing our teeth? Will the "holier than you" folks allow the use of our own body cells to grow our own cures or will they stop that, too, because one stage of the process could potentially be transplanted into a womb and grown into a human? Or will they make my son wait and suffer for those intervening decades while the ability to grow hESC's from adult somatic cells is perfected, when he could have a cure today?

How moral is it that my son is crippled when a discarded resource that could cure him is available? We as a country have the wealth and expertise to cure him, yet our supposedly more moral brethren prevent that from occurring. When will the people of this country reject the mean morality and religious tyranny of those few?

When can my son run again?

If you are not registered to vote, please for the sake of my son and so many others who could be cured, register. This November no matter how viscous and dirty the mudslinging leveled against those who support hESC research is, no matter the "personal" recorded phone call from Pat Robertson telling you it's "Your Godly duty" to vote the way he tells you to (against cures), please think of my son. Please vote to let him be pain free again, to be able to play basketball again.

I, a life-long Republican and Sunday School teaching Evangelical Christian will vote for John Kerry.

Please join me and let my son's suffering end.

-- Peter Welch,

*Science Online, Feb 12, 2004--"This study shows the feasibility of generating human ESC's from a somatic (body) cell from a living human being" Dr. Woo Suk Hwang--Seoul National University). **(Sciencexpress, 1 May 2003, Washington Post-5/30/03 , Dukemed 2/7/03, 3/23/03, Salk Ins., Cancer Research 6-1-03, Development--March 2003, the June 2003-Proceeding of the National Academy of Sciences, New Scientist May 7, 03<>, Nature July 24, 2003, Nature Sept 18, 2003, Circulation 4/15/03, Science April 2003, Current Biology 5/13/03, Nature 2/15/04.

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