If Wisconsin Republicans get their way, Lou Gehrig's disease will become tougher to cure.
This matters to me. One of my friends, John Ames, worked hard to pass Proposition 71, the California for Stem Cell Research and Cures Act. Like many who gathered signatures to put the initiative on the ballot, John had a child with an "incurable" condition. Bob Klein, who began Prop 71, has a son, Jordan, with type one diabetes. My own son, Roman Reed, is paralyzed.
But John Ames' son had Amyotrophic Lateral Sclerosis, (ALS). In America we call the condition Lou Gehrig's disease, after the famous baseball player. Gehrig's story was told in the Academy Award winning movie, Pride of the Yankees, with Gary Cooper. The film was released in 1942, one year after Lou Gehrig's death.
In ALS, the motor nerves die. When messages from the brain and spine can't get through to the muscles, paralysis slowly takes over. At last, only the eyes can move. The body suffocates.
John and Genevieve Ames did not accept the diagnosis tamely. They fought for their son. Exemplary parents, they did everything they could to help him.
But David Ames grew worse. As the paralysis advanced, he was confined to a wheelchair.
Every night, John would have to lift him from his chair and put him into bed.
John is around 70, too old to have to pick up a big man like his son. But he did it anyway.
I remember when David Ames spoke on behalf of Proposition 71 at a press conference. It was difficult for him to get enough breath to speak: to vocalize the hopes and dreams of those with chronic disease. But he struggled for each inhalation, and did his job.
I was sitting near Bob Klein when the news came. He picked up his cell phone; his face changed.
"I am so sorry, John," was about all he said. What can one say, to a father who loses his son?
There have been numerous attempts to heal ALS -- all have failed.
The single medical treatment, Riluzole, offers only a three-month extension of life.
Today, a company is targeting Lou Gehrig's disease. Their approach is undergoing clinical trials in America, right now.
But in Wisconsin, the home of stem cell research? If Republican lawmakers get their way, the research which might end Lou Gehrig's disease could be criminalized.
If Republican bill AB 214 by Andre Jacque (R-Bellevue) becomes law, scientists could be arrested -- as well as doctors, nurses, and patients.
Why do I call it Republican bill AB 214? Every one of the 52 legislators who support it are Republicans.
Elected on their promise to fight for jobs, Republicans control the Wisconsin Assembly, Senate, and the Governor's office. They are in power now.
Have they done what they promised?
Since election, they have worked very hard -- to protect their own jobs.
Republicans rushed through a Voter ID law making it more difficult for the poor and disabled to vote, (the League of Women Voters estimates Voter ID requirements would disenfranchise 11 percent of currently registered voters*), bringing Karl Rove's predicted permanent Republican majority closer to reality.
Now these supposedly "fighting-for-jobs" Republicans are trying to criminalize a form of research which may one day cure Lou Gehrig's disease.
Why? Fetal cell research uses tissues from an aborted fetus.
That is not small.
I cannot imagine anybody really wanting an abortion; it is a desperate last-ditch emergency. The Supreme Court decided long ago to make the process illegal after the point of viability. Once a child can live outside the womb, (roughly the 20th week) according to American law, that is a human being, receiving full protection under law. Until that point, it is a woman's right to choose if she wants to terminate her pregnancy; it is her business, not mine, and not the government's.
You and I may differ on a woman's right to control her own body.
But if there is an abortion, should we criminalize any good coming from it?
Ironically, other forms of stem cell research are often accused of being abortion-related, when they have absolutely nothing to do with it. Embryonic stem cell research, for example, biologically cannot produce an abortion -- because there is no pregnancy. No womb, no baby.
To me it is like the organ donor badge I have on my driver's license. When I die, if there is any part of me that can be useful to someone else, I want that donated. I have seen too much pain on the faces of those with chronic disease. If, when my life is over, there is an organ of mine that can ease suffering, I want it given.
A friend of mine was killed in an accident. His parents donated his organs, which gave life to others.
Fetal cell research? When the fetus cannot be saved, the parents have to decide if its organs can be donated. It is hard to think about.
But consider the alternative.
What if fetal cell research was illegal already?
Here are some diseases which would be ravaging the country right now:
Rubella.
Polio.
Hepatitis.
Chicken pox.
Measles.
Mumps.
Rabies.
Those are conditions which once killed literally millions, in America and around the world. Now, thanks to vaccines developed through fetal cell research, we barely think about them.
Read an amazing article by Stephen A. Duncan, "The many benefits of fetal cell research",
Finally, a less-known fact about Lou Gehrig, and his career after leaving baseball.
He became a parole board officer.
"In October 1939, he accepted Mayor LaGuardia's appointment... as a New York City Parole Commissioner... Gehrig visited New York City's correctional facilities... quietly and efficiently performed his duties... often helped by his wife Eleanor, who would guide his hand when he had to sign official documents. About a month before his death, when Gehrig reached the point where his deteriorating physical condition made it impossible for him to continue in the job, he quietly resigned." -- Wikipedia
His last acts in life were to help convicted criminals: folks in whom society saw little value. He saw good where others did not, and tried to give them the second chance he never got.
We should honor the memory of Lou Gehrig, by defeating the disease which took his life.
Follow Don C. Reed on Twitter: www.twitter.com/diverdonreed
Last year I was diagnosed with ALS. This past spring I took part in the trial that I believe Mr. Reed is referring to. Next week the results of the 12 patients in the trial will be announced. I can say that for me it has drastically changed my life and has produced unprecedented results that far surpasses anyone's expectations.
I feel it is important that we continue this research and give it the opportunity to help so many that need it. Not only can this provide hope, to the ALS community which is sorely lacking that precious commodity, but it can lead to treatments for stroke victims, spinal injuries and many other neurological conditions. The fact that they can replicate these cells billions x billions of times means that in the case of this trial one tragic loss of life can potentially lead to help for hundreds if not thousands of people.
It is vital that this research is given the chance to help as many people as possible.
The Court simultaneously ruled that exceptions could be made if the health of the mother were involved, and that health includes "physical, emotional, psychological, familial, and the woman's age." This essentially means that abortion is legal at any point in the pregnancy, including extracting the child halfway from her mother's womb in order to protect the mother's "familial health."
Thank you sharing your personal pain in this thoughtful article.
Another side says, if we're going to be killing them anyway, might as well make something positive come out of it. I can understand that position as well.