It's two forty-seven AM, and for a brief delicious moment, the house is
still. My daughter is staying with us for a while, and her three year old
son Jackson is asleep, gathering his energies, getting ready to burst upon
the world at his usual 4:30, when I will hear a small fist  knocking at my
study door, and it will be story time. (He likes Thomas the train, who is a
truly useful engine, but not Diesel 10, who has a claw-this only makes sense
if you are immersed in the world of talking transportation...)
But in this moment, it is quiet, deep still quiet, the silence just before
the storm.
Today is Super Tuesday.
Two dozen states choose their Presidential candidate today.
I am hoping there will be gigantic turnout everywhere-no laziness
allowed-because oh, the consequences, if we choose wrongly!
What if we forgot to vote, and the wrong President was elected?
Let's take a quick look at the consequences of a Presidential choice, or
rather, what happens when not enough people vote...
In his last days in office, Bill Clinton became the first President to
approve federal funding for embryonic stem cell research. He had the
National Institutes of Health research the matter, consulted with all sides,
and made the decision to go forward.
Unfortunately, the next Presidential election had a low turnout. Times were
good, and people were kicking back and taking it easy. Big mistake. The
election came down to a handful of votes in Florida, (remember the hanging
chads?), and the Republican-dominated Supreme Court (7 Republicans, 2
Democrats) jumped in and that was that.
Almost before the doors of the White House closed behind him, the new
President shut down the stem cell program approved by Bill Clinton.
America roared.
We might have been lazy before, and allowed what should have been a
landslide election for Al Gore to slip through our fingers-but not this.
A nation-wide protest ensued. Probably never before had so many people been
inspired by medical research. Literally hundreds of patient advocate and
medical groups went into action, and the press recorded it, with thousands
of articles in print and electronic media.
Under immense pressure, President Bush agreed to allow a small amount of
research funding for the new science, but only on the stem cell lines
existing on August 9, 2001.
Not only were those few lines woefully inadequate (only 22 available of the
78 claimed), but the funding deck was stacked in favor of the White
House-approved adult stem cell research. By its own statistics, the Bush
Administration poured more than twenty times the funding into adult stem
cells than embryonic stem cell research received.
 "Over the past six years, . $3 billion has gone to . all forms of stem
cells.(of which) "$130 million has been devoted to embryonic stem cell
research."  --Advancing Stem Cell Science Without Destroying Human Life", p.
6, Domestic Policy Council, The White House, January 9, 2007, updated April,
2007.
That is a ratio, if my math serves, of roughly 23-1-for every one dollar
spent on embryonic stem cell research, twenty-three dollars were spent on
the Bush-approved adult stem cell experimentation.
In addition, massive bureaucratic obstacles were imposed, burdens still
ongoing; to this day, colleges which do not want to lose all their federal
funding must jump through endless hoops. If they want to use new,
non-Presidentially-approved stem cell lines, they must be 100% careful not
to let any equipment that touches federally-funded projects come in contact
in any way with the new research. They must use all separately-purchased
equipment (from half million dollar microscopes to electric light bulbs) or
all their funding for all their projects could be cut off.
Most threateningly, at the same time Mr. Bush presented the alleged
"compromise" and allowed the sliver of embryonic stem cell research to go
forward, behind the scenes he was working with men like Representative Dave
Weldon of Florida, and Senator Sam Brownback of Kansas to criminalize
medical science, something that had never been done before in America.
The Weldon/Brownback law, of which Mr. Bush said,  "I support it,
enthusiastically support it", would criminalize advanced stem cell research:
mandating ten year jail sentences, million dollar fines, and impoundment of
scientific equipment for anyone involved in somatic cell nuclear transfer
research, (SCNT, or therapeutic cloning) which they lumped together with the
universally-despised reproductive cloning.
The Cloning Prohibition Act was rushed through the Republican-dominated
House of Representatives without a single public hearing.
Only when it hit the Senate did the patients have a chance to fight back.
It was CAMR's finest hour. From all across the country, the patient
advocates groups came together, in the Coalition for the Advancement of
Medical Research-and folks, if your group is not a member, please consider
joining-they were, and are, terrific.
For if there were enemies of research, there were also friends. Senator
Edward Kennedy had a hearing on stem cell research, to which I was able to
present testimony.
Here is what I said: (those who know me, skip over this next part, which you
have only seen about a dozen times or so) in the Congressional Record:

13th Congressional District Resident Don C. Reed Provides Testimony Before
the U.S. Senate Health, Education, Labor and Pensions Committee as a
Proponent of Stem Cell Research. Mr. Reed is the father of Roman Reed who
suffered a football injury 7 years ago and is paralyzed from the neck down.

September 5, 2001

Dear Senator Kennedy, honorable Committee Members:

Seven years ago, my son Roman Reed suffered an accident while playing
college football. His neck was broken; he became paralyzed from the
shoulders down. Since then, our family has become involved in the struggle
to find a cure for paralysis. We were fortunate to have a new law passed in
California, the Roman Reed Spinal Cord Injury Research Act, setting aside a
small amount of money each year for paralysis research.

Imagine our joy, therefore, to hear about the amazing possibilities of
embryonic stem cells. If new nerve cells could be therapeutically cloned,
and imprinted with Roman's DNA pattern, his own body could re-grow nerves to
heal the damaged spine. Our son might be able to close the fingers of his
hands again, maybe even rise and walk.
Unfortunately, despite President Bush's public commitment to allow embryonic
stem cell research, steps are being taken which will effectively kill that
research.

1. The President supports and has promised to sign House Resolution 2505.
Under this terrifying anti-science law, it will be a federal crime to make
embryonic stem cells: a felony, punishable by a ten-year jail sentence, and
a one million dollar fine. HR-2505 treats therapeutic cloning of cells as if
it was the reproductive cloning of humans. Obviously, to multiply infant
copies of ourselves is wrong, and should be illegal. But therapeutic
cloning? That is about cure: making cells, healing people, saving lives.
Comparing therapeutic and reproductive cloning is like comparing a surgeon's
scalpel to a criminal's switchblade. Their purposes are completely
different.

Under HR-2505, if a researcher found the answer to cancer, paralysis, or
AIDS -- but cloned just one embryo to make stem cells -- he or she would
have to receive the Nobel Peace Prize in jail.

2. The President is also shutting off the only other source of embryonic
stem cells; he will not allow the scientific use of embryos left over from
fertility procedures. Under the Bush guidelines, no more new embryonic stem
cell lines can be made. Ever.

3. The Administration's list of 64 viable stem cell lines is neither
sufficient nor even accurate. Sweden, for example, is credited with
seventeen "robust, vital" lines. The Swedes made a phone call to correct
this, stating they have three usable lines, not seventeen. Only ten
laboratories in the world even have viable embryonic stem cell lines.
America has four.

4. Even these extremely few stem cell lines can never be used to help
people. As is the case with all new science, experimental animals
(laboratory mice) were used to make the lines. Food and Drug Administration
guidelines on inter-species experiments disqualifies them for human cure. If
we could use therapeutic cloning, this would not be a problem. We could just
manufacture some more--but HR-2505 makes that illegal.

The President's proposal, then, leaves us with nothing but the promise of
what might have been.  This decision will hurt every American. For those who
suffer crippling and life-threatening diseases now, and the families who
watch them suffer, our most promising possibility of cure has been denied.

For sheer financial self-interest alone, the quest for cure must be allowed.
Our country faces an increasingly un-payable mountain of medical debt,
public and private. It is overwhelmingly expensive to provide long term
hospitalization and attendant care.

Example: spinal cord injury, which my son Roman has, costs America
approximately $20 billion a year in medical costs and lost wages. That's
about $170 per taxpayer, for just one medical condition. And the cost in
suffering to 450,000 paralyzed Americans and their families? That terrible
price can never be calculated.

Why would anyone want to deny cure to the injured and critically ill? The
problem, conservatives point out, is that when we dissect an embryo to
obtain stem cells, we are destroying living tissue. That near-microscopic
dot is technically alive.

And there is our choice. Like the battlefield medic who decides which
soldier's life to try and save, because he cannot save them all, we too must
choose; a 5-7 day old collection of cells in a glass Petri dish-or a hundred
million suffering people.

Think of folks you know. Like President Ronald Reagan, who has Alzheimer's
disease. Or Michael J. Fox, with Parkinson's. Mary Tyler Moore, juvenile
diabetes. Magic Johnson, HIV. Elizabeth Montgomery, who died of cancer. Vice
President Dick Cheney, heart disease. Christopher Reeve, spinal cord injury.
Annette Funicello, Multiple Sclerosis. And other folks, out of the public
eye, like a soldier terribly burned on the battlefield and living in
continual pain, or my sister Patty, who died of leukemia at age 24. Perhaps,
God forbid, even someone in your own family.

Whose rights shall we protect-- our loved ones, the living people of the
world-- or a dot in a dish, a collection of cells which can neither think
nor feel?

Honored committee members, you who will make this momentous decision: do not
feel rushed. Give us your best. For in your hands are the hopes and dreams
of those imprisoned by infirmity, confined to a lifetime of wheelchairs and
hospital beds, and the endless humiliations of helplessness.

As my paralyzed son Roman puts it: "Take a stand with us today, in favor of
research for cure. Take a stand - so one day, everybody can."

Thank you.
Don C. Reed

Four times President Bush and his friends brought the Weldon/Brownback bill
forward, and four times the patient advocate community and our leadership
friends drove it back.
Progress has been blocked too long.
For seven years we have endured a leader who has delayed and would deny the
research I believe will one day free my son from paralysis, and my sister
from cancer.
 Today is Super Tuesday, and the polls predict a massive turnout. That is as
it should be.
And after the primary and the general election, after what will probably be
one of the most grueling and hard-fought political campaigns in history?
Even then, we dare not return to slumber.
Stem cell research is only one issue, although it is my own. We also face
global warming, poverty, war, and all the giant problems of our day.
We will defeat them, a little bit at a time. Every smallest action we take
is like a wave crashing against a rocky cliff: blue water roars up, explodes
into foam, and falls back-the cliff remains, seemingly nothing has
happened-but change has been made. From this conflict, beaches are built.
We who are the citizens cannot ever go back to just sitting idly by. We need
not maintain a continual frenzy of activity, but we each need to do a little
something, often.
As Edmund Burke said, "All that is necessary for the triumph of evil is for
men (and women) of good will to do nothing." That-doing nothing-is the
greatest enemy.
To do nothing is like sitting at the kitchen table reading the paper and
drinking coffee-a pleasant activity, but not one to be indulged, while the
house is burning down.
Action is required: for our country, and for our world.
We all need a little bit of Super Tuesday in our lives-every day.

Don Reed
www.stemcellbattles.com

Don C. Reed is co-chair of Californians for Cures, and writes for their web
blog, www.stemcellbattles.com. Reed was citizen-sponsor for California's
Roman Reed Spinal Cord Injury Research Act of 1999, named after his
paralyzed son; he worked as a grassroots advocate for California's Senator
Deborah Ortiz's three stem cell regulatory laws, served as an executive
board member for Proposition 71, the California Stem Cells for Research and
Cures Act, and is director of policy outreach for Americans for Cures. The
retired schoolteacher is the author of five books and thirty magazine
articles, and has received the National Press Award.

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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