TESTIMONY: Speak to Congress—and Save Stem Cell Research!
By Don C. Reed
Get some popcorn, put on the video of Senator Tom Harkin’s Committee hearings on “The Promise of Human Embryonic Stem Cell Research”, sit back, enjoy—and then get ready to fight.
Here is the URL to watch the hearings: both the opponents of the research (including the author of Dickey-Wicker himself, Roger Wicker) and our side as well.
For those short on time, here is a summary of the hearing, done by Medpagetoday reporter Emily P. Walker: https://www.medpagetoday.com/tbprint.cfm?tbid=22263
I contacted the committee, asking to submit written testimony, which follows below.
Most importantly– here is how you can speak to the power people who need to hear from you in Congress. Cut and paste it into your search bar: I guarantee you will be glad you did—then share it with your list of advocate friends—it is excellent, easy, and effective.
It is a wonderful (and simple!!!) way to reach all your Senators and Representatives in a one-click way. It has a message ready to go, but you can edit it in any way you like.
The widget is from Parkinson’s Action Network (PAN) and Amy Comstock-Rick, immediate past-President of the Coalition for the Advancement of Medical Research.
I hasten to add that neither Ms. Rick nor PAN have any connection to my opinions; I simply respect their work and am passing it along for your consideration.
Below is the testimony I submitted to the committee hearing. My title is given for purposes of identification only, and may or may not express the views of Americans for Cures Foundation.
Don C. Reed
Vice President, Americans for Cures Foundation
Testimony for the Record to
United States Senate Committee on Appropriations
Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies
Hearing entitled: “The Promise of Human Embryonic Stem Cell Research”
September 16, 2010
Honorable Senators Tom Harkin and Thad Cochran, Members:
Thank you for this opportunity to provide testimony on a subject which affects one hundred million Americans with a chronic (incurable) disease or disability—and everybody who pays the medical bills.
The costs are staggering: last year, chronic illness cost America $1.65 trillion, more than all federal income taxes ($1.2 trillion) combined. The suffering is incalculable.
These are not empty statistics, but members of your family and mine: people like my son.
On September 10th, 1994, Roman Reed was playing college football. At middle linebacker he was having a great game: 11 solo tackles, a diving one-hand interception, a forced and recovered fumble.
And then—the accident. There was a hideous sound, like an axe handle breaking on a rock. In an instant our son was paralyzed from the shoulders down. He was nineteen.
The doctors gave us no hope.
“He will never walk again, nor close his fingers; almost certainly no children,” they said.
We would not accept that diagnosis then, and we do not accept it now. We worked to find a cure.
With the leadership of Fremont Assemblyman John Dutra, we passed a California law, Assembly Bill 750, the Roman Reed Spinal Cord Injury Research Act of 1999.
On March 1, 2002, I held in my hands a rat which had been paralyzed, but which walked again, thanks to embryonic stem cells—as my son watched from his wheelchair.
This was the famous experiment to re-insulate damaged nerves in the spine. Geron is taking it to the world’s first human trials of embryonic stem cells, recently approved by the FDA. Ten newly-paralyzed young men or women will be offered a chance my son did not: to maybe get better, through embryonic stem cell research.
“Roman’s law” funded the first use of the Presidentially-approved embryonic stem cell lines. And, importantly, the Federal government backed us up. For our total expenditure of $14 million over nine years, we brought in an additional $60 million in follow-up grants and matching funds from the NIH, new jobs and revenue. But it was not enough.
For cure to come, not only for paralysis, but also the dozens of incurable diseases afflicting so many, the entire field of regenerative medicine had to advance.
In 1942, research connected with the medical aspects of radiation sickness from the atomic bomb revealed that bone marrow transplants had healing properties. That was the beginning of adult stem cell research, which has proved extremely useful in the treatment of forms of cancer and blood disease.
But it is not the exclusive answer to all chronic illness and injury.
Embryonic stem cells which build every portion of the body are also important.
The difference between adult and embryonic stem cells is like the difference between gift certificates and cash money—one can only be spent in certain places, the other is acceptable everywhere.
For example, adult stem cells heal surface wounds slowly, leaving a scar. Embryonic stem cells build the entire human body. The difference is power is extraordinary.
For the field of regenerative medicine to advance, both types of cells are needed: each is different, and has different powers and purposes.
But there are subtle dangers to be aware of with adult stem cells. They cannot always do what embryonic stem cells can. Sometimes adult cells which have been experimentally turned into useful cells revert to their original adult stem cell state. One attempt to turn adult stem cells into nerve cells did not last, and after a few days, the rats which had the cells implanted developed excruciating pain, so they gnawed off their paws.
An approach I regard as a failure is the attempt to use Olfactory Epithelial Glia (OEGs) to restore spinal cord function, basically reaching a scalpel up into the nose and scraping off part of the brain, which is then spread like jelly on the injured spine. I have spoken with a recipient of that treatment who described (after an expenditure of approximately $40,000) the essential failure of it: the paralyzed person regained a patch of skin sensation on his elbow, so that he could feel his sleeve go on, when they dressed him in the morning.
Much has been said about “adult stem cell treatments for 70 diseases”, but this is misleading at best. Prescribing aspirin for cancer may be a treatment, but it is not a cure.
The ancient scientist Galen spread pigeon dung on the spines of paralyzed gladiators. It was a treatment, but hardly a successful one.
The idea of adult stem cells being ready to be the sole standard of treatment is not only unwise but cruel, imposing something unreliable in place of the possibility of actual cure.
California’s Bob Klein began an initiative, Proposition 71, the Stem Cells for Research and Cures Act. I was proud to serve on the Board of directors of that successful effort.
But even when 7 million voters approved the $3 billion stem cell program, lawsuits were hurled against us: frivolous in their grounds, but devastating in their consequences.
For almost two years the full program was held up. Research delayed is research denied. Who knows what might have been discovered during that time, if we had our program fully operational?
But we prevailed, and today the California Institute for Regenerative Medicine (CIRM) is the pride of our state and a friend to all the world.
Recently, four major grants, $20 million each, were awarded by the CIRM for embryonic stem cell research: Lou Gehrig’s disease, stroke, juvenile diabetes, and age-related blindness were chosen. Each is an attempt to do the impossible with the invisible: to try and heal a malady incurable since the dawn of time.
Cures the CIRM develops will benefit everyone; not only the individual families whose suffering will end, but also the economies of every nation, struggling to pay mountains of medical debt. All will benefit.
But we need the Federal government to help with the enormous costs which wait beyond initial research: the “valley of death” which faces all new medical discoveries: the costs of turning theory into therapy, all the way from bench to bedside, may approach a billion dollars. California’s program has a budge of approximately $300 million a year: we can’t do it alone.
March 9th, 2009, a day of joy. Roman, Gloria and I were in the room when President Barrack Obama reversed the Bush restrictions. Now, at last, the Federal government would take its rightful place, leading in the quest for cure.
But another obstacle arose. The case of Sherley v. Sebelius may shut down federal funding of the research so many patients and families have worked to advance.
The argument is often made by ideological opponents that embryonic stem cell research is a form of abortion.
This is false. How can there be an abortion, when there is no baby
There is no pregnancy in embryonic stem cell research. Nothing is placed in the womb. It is biologically impossible for an unemplanted blastocyst to become a child. It is living tissue, like a wiggling sperm, but not a life. It cannot possibly become a child without the nurturing protection of a mother’s womb. No mother, no baby: this is unarguable fact.
Congress had a full and vigorous debate on federal funding for the research: and approved it twice. The Stem Cell Research Enhancement Acts of 2005 and 2007 passed both houses with strong majorities. President Bush exercised his prerogative and vetoed both bills, but the will of Congress was crystal clear.
The Senate, the House of Representatives, and the President of the United States support federal funding of embryonic stem cell research.
If research funding is blocked for ideological reasons, we abandon a principle: that every American family deserves the best medical treatment science can provide.
Denying cure condemns two million paralyzed Americans like my paralyzed friend Karen Miner to a life sentenced incarcerated in a chair; it diminishes hope for those who suffer cancer and leukemia, which killed my mother and my sister Patty; and it slows the growth of jobs in America’s shining new industry: biomedicine.
Nine years ago, September 5, 2001, I provided testimony for Senator Edward Kennedy’s similar hearings on scientific freedom for stem cell research. I conveyed my son Roman Reed’s request, asking that the Senate:
“Take a stand: take a stand in favor of medical research; take a stand—so one day everybody can.”
Roman—and his wife Terri, and their three children, Roman Jr., Jason, and Katie—send that message again.
Finally, I would be remiss if I did not cite one of America’s greatest advocates.
The late Christopher Reeve sent a dictated letter to our family. It said: “One day, Roman and I will stand up from our wheelchairs, and walk away from them forever.”
Cure did not come in time for the paralyzed Superman, but we still believe in his great dream. Our champion has fallen, but the flame of his faith still lights our way. He always said, we must “go forward”. And we will go forward: because America has picked up the torch. Thank you.
–Don C. Reed, firstname.lastname@example.org