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STEM CELL BATTLES
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Eight o’clock Saturday morning, the air was fresh and clear, and I was standing on one foot on a concrete walkway, in front of the San Leandro City Council Chambers. The single-foot stance did not indicate the need for restroom facilities. I was just practicing balance, something with which I am not naturally gifted.
One reason my balance is so poor was that my feet are spectacularly flat, and--
“Hey!” A large individual, unusually well-muscled, approached me. I felt a sudden chill at being singled out by a stranger on the street—but he was smiling.
“Good little posture,” he said, “What martial art?”
“Tai chi-- for senior citizens!” I hollered back. He gave me a thumbs-up, went his way.
The doors opened up behind me.
“How you doing?” said the man in charge of the building, clicking back the locks.
I told him I was there for the town meeting with U. S. Representative Pete Stark, and he nodded.
I told my usual Pete Stark story, how when Roman was first paralyzed, and I was trying to raise money to pay his therapy costs—that both Pete Stark and Dianne Feinstein had each personally donated $500.
The other guy smiled, said he heard stuff like that about Stark every day.
“Man is on the job!”, he said.
We shook hands, and he rushed off to set things up for the meeting.
But before the town hall meeting began, there was to be a pre-meeting meeting--several parents of children with diabetes were going to meet with Pete.
This had been arranged by advocates with the Juvenile Diabetes Research Foundation.
I don’t know how familiar you are with JDRF--???
They are to me what every advocacy organization should be: active, involved, knowledgeable, super-heavyweights. They support full stem cell research, and they will always step up to the plate, when it is time to get our government’s attention.
For anyone who seriously wants diabetes cured, government involvement is vital.
Why?
For one simple and undeniable fact: private charity cannot do the job alone.
Consider three examples, paraphrased from a JDRF booklet, “The Cost of Diabetes Continues to Grow”.
1. In 2005, private charity for cancer research raised $121 million. The federal government’s contribution through the National Institutes of Health? $5.54 billion. In other words, out of every dollar raised, ninety-eight cents came from the government.
So, if we are concerned about cancer, do we want two cents from charity or ninety-eight cents from government? (Well, actually I want both!)
2. Heart disease was similar: private charity raised $141 million—the government provided $2.07 billion. Of every dollar raised, six cents came from charity, ninety-four from that shining jewel of America’s government, the NIH.
3. Diabetes gets far less from the federal government, just $433 million in that same year, in addition to $110 million on its own—and the leader in that effort was the Juvenile Diabetes Research Foundation.
Question: my son is paralyzed-- why should I care about diabetes research?
Leaving aside the pain of the people involved, there is a very practical reason why every advocate should be on the same page, supporting diabetes research for cure.
If medical research advances in any significant way, everybody wins.
Example: a spinal cord injury scientist, Dr. Ed Monuki recently developed an invention to sort stem cells that could be used by any science lab in the world. (I cannot resist adding that my son Roman’s law that funded Dr. Monuki’s work!)
And consider the similarities of other diseases and disabilities.
Diabetes is a disease of the immune disorder; so is AIDS; will not cure for one bring relief closer for the other?
Would it not make sense for the AIDS and diabetes communities to stand as one?
If we fight side by side, our impact is multiplied.
That is why Erich Albrecht of the JDRF, and friends found ourselves waiting in the San Leandro City Council Chambers. Erich told me their names, which I scribbled—but I can’t always read my own writing. Attending were: - Mark Turnlund, Christy Turnlund, Amy Turnlund and older daughter (whose name I forgot—if somebody will write and tell me, we will definitely put her name in) - Rita Avisa and her daughter Gabriela - Susan Linney (mother of 2007 Children’s Congress Delegate, Spenser Linney, who was not present due to his Varsity team baseball game).
Pete Stark, United States Representative from my district, was holding a town hall meeting—and before that time, JDRF folks were going to meet with him, to urge his continuing support for the national Special Diabetes Program.
If this important piece of legislation is not renewed, the effect will be catastrophic.
The federal research budget for diabetes would drop from $433 million a year to a miniscule $283 million.
That is not much research funding for a condition which costs America $132 billion a year, not to mention the suffering of millions of families.
The Center for Disease Control has estimated that the annual health care cost for just one person with diabetes is approximately $13,000—five times the amount ($2,600) for someone who does not have diabetes.
How many people are we talking about?
Right now, one American in seven has diabetes. And it is getting worse—by 2020, approximately one-third of our country will have the devastating condition.
Pete Stark is an intelligent, caring public servant. He absolutely cares.
But he is also a government official, faced with an endless economic crisis, everybody tugging at his sleeve, and there is only so much money to go around. He depends on hearing from we citizens, to let him and every government official know what is at stake.
Sometimes, he says no. For instance, I approached his office on a wheelchair question. Medicare helps individuals with wheelchair costs—but should that financial assistance be based on the lowest-cost wheelchairs available on the Internet, or should it be structured for the individual’s need? Naturally, I prefer the latter method of funding, more expensive, but better for the wheelchair driver. But Pete currently is leaning toward the lowest-cost-available approach.
Our meeting with the United States Representative had to be well-planned; we might have only a few seconds, every word had to count.
So Erich put together talking points. This is the actual memo, slightly shortened.
Talking Points for Representative Pete Stark meeting: March 15, 2008
Agenda: 1. Mark: thank Rep. Stark for the meeting, for supporting diabetes research in the past and that we hope to continue to work with him as a leader on the issue.
2. Introductions: state your name, city where you live, place of employment (if applicable), and your connection to diabetes.
a. Example Introduction: “My name is Erich Albrecht. I live in San Leandro and work for JDRF. I have was diagnosed as a type 1 diabetic at the age of 4, over 25 years ago, and have seen how far diabetes treatment has come in that time due to the research funded by the JDRF and the US Government. For that reason, I hope to see the Special Diabetes Program continued for numerous years to come.”
3. Erich: briefly describe JDRF's goals: Thank him for supporting Medicare package that passed the House because this package included a one year extension of the Special Diabetes Program & look forward to working with the House next year to complete the effort to secure a multiyear renewal. (JDRF hopes to make this part of this year’s Medicare package being discussed by the Finance Committees) c. The program, which provides more than one-third of the federal type 1 diabetes research funds, has seeded some incredible advances in prevention, treatment and complications. d. Over 20 million Americans suffer from diabetes. e. Diabetes costs the U.S. over $130 billion annually. f. Individuals with diabetes account for more than 30% of Medicare expenditures. g. JDRF will provide about $150 million for research this year; we’re doing our part to help find a cure and want to continue to partner with the US Government.
Please keep your stories brief and relevant!
Please keep your stories brief and relevant!
Beside me now were three families: three moms, a couple dads—and three beautiful little girls, two of whom have type one diabetes. Everyone there had the advocate’s outlook—ready to share a message, to fight for our kids.
One little girl had to be taken to the restroom to take her blood sample, and test it, because she “did not feel right”.
Imagine if, during every activity of the day, you had to constantly monitor blood sugar levels, worry about injections, or pumps with needles going into the body of your child.
These are the stakes-- our children-- millions of them.
They are at risk of stroke, kidney failure, blindness, and the amputation of their limbs.
It had become 10:30.
Suddenly, he was there.
No fuss or fanfare, no flock of aides around him, just Pete Stark, ready to go.
He saw the children, and he smiled.
“Are you the JDRF folks?” he asked the parents.
We circled in around him.
One by one, we introduced ourselves, a quick sentence or two. When it was my turn, I forgot all about mentioning the Special Diabetes program.
“My son, Roman Reed is paralyzed—“ “I know Roman well,” he said.
“—and I support diabetes research!” I blurted. Oh, well.
The mothers spoke about their children, making the reality of the situation clear.
Mark and Erich brought the message home, saying:
“You have always led the fight for diabetes research. We need your support to continue and expand the Special Diabetes Program.”
He smiled, but made no committing promises. A man of his word, he has to be careful.
Then it was time for the larger Town Hall meeting, in the next room
We crowded in for a picture—click—and the moment passed.
What is the future, now, for the Special Diabetes Program? Will Representative Stark lead the fight for it once more?
We cannot know yet. There are no guarantees.
Except one: if we in the advocacy community do not make our case, we will fail.
And one more thing:
Friday, I went to speak at a local high school, in a leadership class taught by a friend of twenty years. He’s a teacher, Mr. R., and a beloved one. His students are lucky to have him, and they knew. The class had a relaxed-but-involved emotion, everybody cheerfully on the same page, the hallmark of an effective teacher. They wanted to be there.
I gave my usual twenty minute speech, and naturally brought up Bob Klein. Talking about stem cells and leaving out the champion of Proposition 71 would be like lecturing on light bulbs and forgetting Edison Of course I mentioned how Bob’s research advocacy began with the battle against diabetes, because his son Jordan has type one, the more dangerous variety.
I felt a stir of interest in the room, so naturally added a little more emphasis.
I told the real risks involved—amputation, blindness, stroke-- that diabetes is not just a matter of shots every day. I laid it on heavy; it matters.
But afterwards, I wished I hadn’t said quite so much.
My friend told me, his daughter had just been diagnosed with type one diabetes.
P.S. I asked Erich for any final thoughts or comments he might want to make. He wrote:
Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.16 billion to diabetes research, including more than $137 million in FY2007. More than 85 percent of JDRF's expenditures directly support research and research-related education. In FY2007, the Foundation funded 700 centers, grants and fellowships in 20 countries.
Become a JDRF Advocate to demand that our government continues to increase funding for diabetes research. To sign up go to: http://www.capitolconnect.com/jdrf/datamod/jdrfReg.aspx, then email this link to your contacts to recruit even more Advocates.
Erich Albrecht, Outreach Manager, Greater Bay Area Chapter Juvenile Diabetes Research Foundation 49 Stevenson Street, Suite 1200 San Francisco, CA 94105-2974 415-597-6317 415-977-0355 fax ealbrecht@jdrf.org www.jdrf.org
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