By now you've heard about Judge Royce Lamberth's ruling to block federal funding of embryonic stem cell research. This Texas-reared conservative, appointed by Ronald Reagan and reportedly an opponent of stem cell research, has used an arcane restriction, the Dickey-Wicker Amendment, to strangle the research.
Dickey-Wicker forbids federal funds for the endangerment of embryos--even when the microscopic dots of tissue are already going to be thrown away.
Dickey-Wicker is not a law; it was never debated and passed. It is an amendment, attached to the budget bill every year--and everyone has been afraid to mess with it, so it goes through unchallenged.
Ironically, it was not originally designed to affect stem cell research.
Dickey-Wicker was first passed in 1996, before human embryonic stem cell research even existed. Yet this undebated prohibition may destroy the hopes of cure for a generation, or longer.
Until now, Dickey-Wicker has been regarded by scientists as something like a badly-functioning streetlight.
If your streetlight was stuck on red for ten years and nobody ever came to fix it, what would you do? Sit stopped at the crossing till you died of old age? Or would you find a way to deal with it, like maybe looking both ways and going ahead carefully.
That was what has been done so far. The original Clinton stem cell policy was simple; Dickey-Wicker forbade funding for the endangerment of an embryo, so only the stem cells themselves could be worked with.
There is precedent for this sort of age-related different treatment, of course. Think of soldiers in World War II, who were drafted and sent into combat--but only at a certain age. Babies were not sent to war, only youths 18 and over. Similarly, children are not allowed to drink alcohol, or to vote. A different portion of the arc of age brought different privileges, prohibitions--and the right to send a human being into battle where he or she might die.
So, the idea of a stem cell being eligible for research funding, but not a blastocyst, was something that could at least be worked with: a reasonable compromise.
But there is nothing reasonable about the denial of funds for an entire field. First, it must be clear what is at stake here.Federal funds are the main pie, not a piece of it.
Example: a California law named after my paralyzed son, the Roman Reed Spinal Cord Injury Research Act, spent $14 million of the taxpayers money over 9 years--but it brought in $60 million, primarily federal matching grants--that is the level of funding which would be sacrificed by this litigious lunacy.
After we just overturned the Bush prohibitions, now worse ones would be imposed? It would be the end of hope for embryonic stem cell cures in this generation.
In the future, of course, seeds planted previously will bear fruit. Results will spring from the California efforts, Geron and the California Institute for Regenerative Medicine , and New Hampshire, Maryland, Illinois, New York, Ohio's Third Frontier, New Jersey--not many states, and all working with one hand tied behind their backs, if this denial of funding goes through.
The Dickey-Wicker Amendment will eventually be seen as the anti-cures abomination it is. Future generations will look back upon us, and wonder how we could have been so stupid--to have the tools of cure in our hands, and put them aside.
Where did Dickey-Wicker come from?
The Dickey-Wicker Amendment is the work of retired Arkansas Congressman James (Jay) Dickey, famous for three things: one, his statement that there are no homosexuals in his district; two, that the invasion of the fictional country Fredonia (in the Marx brother's movie Duck Soup) was the fault of President Clinton--and for the Dickey Amendment.
The other author is Roger Wicker of Mississippi, an ultra-conservative from an ultra-conservative state.
These two men, with the boundless support of the Republican Party, may have doomed cure research. This is a devastating blow. Champion advocate Bernie Siegel likened the judge's ruling to the emotions he experienced after a hurricane: when he found his home in ruins.
For me, the judge's ruling is an assault on my family. Not only is my son Roman paralyzed, but as I write this, my wife Gloria may have breast cancer. She had three bad mammograms in a row, and today we are waiting for the lab results of a biopsy. If she does have cancer, I want the best medicine modern science can provide, which every family deserves.
But if the judge's decision stands, research which might actually cure cancer would not be allowed to go forward with federal dollars. The people filing the lawsuit claim repeatedly that adult stem cell research is superior. This is unmitigated nonsense. Let both go forward; that the best science may prevail.
My sister has cancer. The adult stem cell therapies proposed as an exchange for embryonic? She had them. They took my brother's blood from him, in an eleven hour ordeal: a tube in one arm sucked the blood out, passed it through a machine which removed adult stem cells, and then put the remainder of the blood back into his other arm.
They took my sister to the edge of death with chemo, to shut down her body's immune system, so it would not reject the foreign adult stem cells. She went into a comatose condition, and could not respond to touch or sound.
The adult cells were put in her, and she got better for a while--but not well. The chemo and radiation to shut down her immune system apparently gave her leukemia and several other medical conditions, including graft versus host, meaning the adult stem cells are being fought back against by her own body. She received the best adult stem cell treatments available, but it was not enough.
Embryonic stem cell research may be able to do something completely different, making natural cancer killer cells, the cells which keep some people safe from cancer-- in a dish of salt water.
Think of the difference between embryonic stem cells which build tissues of any part of the body, and adult stem cells which are a repair kit for minor injuries. If you cut yourself, adult stem cells will sew the flesh together, but slowly, and leaving a scar. That is the work of adult stem cells, and very useful it is, too.
But a baby is born without a single scar, because he or she is built by the enormous power of embryonic stem cells. Common sense tells us which is stronger.
Naturally the case will be appealed, as early as this week. Too much is at stake. One hundred million Americans with an incurable disease or disability? Even if we win, and the research funding is reinstated, the cost in delay will be measured in lives.
The same sort of Religious Right people also sued to shut down the California stem cell program, and they succeeded in delaying the research for about two years. Research delayed is research denied. Putting off the cure means people keep the disease or disability longer, maybe die from it.
How many people should have to die because of the decision of one Texas-raised judge (reportedly an opponent of the research in his private life) and the anti-science lawsuits brought by the Religious Right? Medical science policy should not be decided by an ideological fringe group, no matter how powerful.
Some of the judge's decision is so ludicrous that is virtually certain to be thrown out--like the part where adult stem cell scientists are being unfairly hurt, because spending money on embryonic stem cell research means fewer dollars for them? This is like horse-and-buggy companies suing the auto industry--if people have cars, they won't buy as many horses, so we should stop funding automotive engineering! Not to mention adult stem cells have been massively over-funded compared to embryonic.
The judge claims his ruling will only maintain the "status quo"--but his decision is so extreme it would apparently ban funding for the Bush stem cell lines as well.
We, the American families with chronic illness, put up with a lot. We watch our loved ones suffer every day. We have tried to be non-political, because there are fine and decent people in the Party of Lincoln.
But this is too much. With the official Republican party platform calling for a "ban on embryonic stem cell research, public and private", and the example set by one Republican-appointed judge, it is hard to have bi-partisan feelings now.
The Republican-backed Dickey-Wicker Amendment must be removed. As long as it is allowed, the opposition will have a weapon to hit us with. For several years I have been writing about the threat of Dickey-Wicker, but more cautious souls feared "rocking the boat"--well, the boat is sinking.
There are several ways to go:
1. My preference, kick out Dickey-Wicker altogether. A law which was never intended to affect stem cell research should not be used as an ideological club;
2. Require Dickey-Wicker to use the original non-political definition of embryo: "especially: the developing human individual from the time of implantation to the end of the eighth week after conception." (There is no implantation in stem cell research. No implantation, no womb, no mother, no child);
3. Pass a stem cell research protection law, as California did. Our law specifically allows embryonic stem cell research; no religious extremists can block our funding, ever again.
We have enough Democrats now to protect the research. But things will get worse if America elects more anti-science Republicans. Any Democrat who was thinking about staying home from the polls this November-- reconsider.
What should patient advocates do now? Repeal what I call the Dickey-Wicker Abomination by every Democratic means at your disposal.
Talk. Write. Speechify. Organize. Make a phone call to your Senator, your Representative, anybody: everybody.
What matters now is not the quiet calm reflection of a balanced nuanced approach, the endless impossible search for something acceptable to all sides. We did that already, compromising all over the place. No more. Right now, we must speak up, and be heard.
Because we are fighting for our families, and that comes first. We want the light of hope, we want results.
The poet Dylan Thomas said it best.
"Rage, rage, against the dying of the light;
Do not go gentle into that good night."
P. S. We just got the phone call. My wife Gloria, best friend for 41 years and the mother of my children--is okay. The biopsy came back benign. There is no cancer. The joy I feel, as the tears run down my face right now, is what everyone should have the right to feel--no one should ever be denied the chance of cure.