Feeds:
Posts
Comments

Archive for August, 2009

THE GREAT INTERNATIONAL… STEM CELL DAY POETRY CONTEST!

By Don C. Reed, http://www.stemcellbattles.com

Dear Stem Cell Research Supporter:

First, consider sending this notice to everyone on your e-list. You’ll see why in a minute.

How are you going to celebrate the second annual Stem Cell Awareness Day, September 23rd.? (Hint: even if it is just that you wished your loved one a “Happy Stem Cell Awareness Day!”, be sure to send a note saying that to: stemcellday@cirm.ca.gov).

Folks, Stem Cell Awareness Day is our holiday; it is brand-new, only our second year. Last year, we celebrated only in two nations, America and Australia. This year we need to grow it, across the country, across the world.

Where? Everywhere. In every state or nation with people who might benefit from the healing powers of regenerative medicine—there is where we should raise attention to our cause.

In a moment, fifteen ways to celebrate: but first…

The Great International Stem Cell Day Poetry Contest!

This is something we are organizing here at the California Institute for Regenerative Medicine (CIRM). Don Gibbons and Ellen Rose are heading up the effort at CIRM; I am the enthusiastic volunteer.

What does that have to do with you? First, you support stem cell research. Second,
anyone who scribbles can throw a rhyme together—why not make one up to celebrate Stem Cell Awareness Day?

The THEME is: “What stem cell research means to me”. That is pretty broad: covers just about anything. Your poem could be fun, or serious. It could be about the agony of illness, the heroism of those who struggle on no matter what, and it definitely could be on the shining hope of cure.

LENGTH: It could be short as a couplet (two rhyming phrases) or as long as a page: (no longer, 250 words max, and only one poem per person, please.) Also, it should rhyme.

ATTITUDE: It must not be malicious, salacious or litigious — but a poem can let you say things you may have kept bottled up for a while, like:

“A pox on the enemies of research on stem cells,
May they get massive headaches, and have both their ankles swell!”

Um, well, moving right along…

Who can enter? Everybody. Patient advocates, family members, people who never thought about writing a poem, anyone who wants to try. Shakespeare is safe, we are not trying for literary masterpieces here.

And everybody will win. How so?

First, Don Gibbons, the indefatigable press agent for CIRM, says: “If we get a fair number of submissions from both scientists and patient advocates, there could be winners in multiple categories”.

AND—there will be prizes…nothing expensive, of course, just something small you will enjoy, and the very best poems will be printed in a CIRM official document, maybe posted on the web.

AND—you are guaranteed a place in our official stem cell endless poem!

Here’s how the “endless poem” works.

Everyone who sends in any poem will have something in our official endless poem. Maybe it will be a line from his/her poem, a phrase, a word, and/or their name, depending on the number of responses.

As official volunteer, I get to cobble representative phrases and/or author names into one loooooooong poem. (As a former English teacher, I have done this before, and it is perhaps not a literary achievement—okay, sometimes it is awful– but it is fun, and it can say something.

So, crank up your literary engines, and send your poem to: stemcellday@cirm.ca.gov.

Now. How else can we mark our holiday?

We want things easy, and doable. Think of the 4th of July. People have picnics, politicians make speeches. We can certainly do that!

Nothing spectacular: nobody has any money. (If you want spectacle, of course, go to the World Stem Cell Summit, September 21-23; Bernie Siegel has been working all year to make that event a standout; and it is still not too late to sign up; just google World Stem Cell Summit and you will find it at once.) Yet we must mark this day, in ways large and small, to rally awareness to the cause of cure—almost anything is better than silence.

Here are fifteen suggestions.

1. What about a Stem Cell Awareness Day backyard barbeque for friends? Everybody brings some food, sit around, gossip about whoever is not present. If you want to get fancy, hand out some one-page easy-reading fliers about the good news of stem cell research? (If everybody chips in a dollar, you just had a fund-raiser—and you could send the $10 or whatever it is to the group of your choice—they will be glad for donations of any size.)

2. What about a Stem Cell Awareness Block Party? Same as suggestion one, but with a couple home-made posters. (WANT MORE INFO ON STEM CELLS? Go to http://www.cirm.ca.gov, lot of good stuff there, plus if you go to Youtube and look up CIRM stem cells you will find plenty of visuals. Try: http://www.youtube.com/cirmtv

3. If you are a SCIENTIST, how about visiting your local high school, give a brief talk in a science class: nothing elaborate, just what you do, and your hopes for the future? Contact the principal of the school, ask him or her. Chances are, they will be delighted to have you speak!

4. Contact your local paper. Ask if they know that September 23rd is Stem Cell Awareness Day. They will say no. Then, ask if you could send them some materials– see below for your handy-dandy home-made press newsrelease!* They will almost certainly say yes. They might do an article on it—at very least, they can list the celebration of Stem Cell Awareness Day in their Announcements calendar.

5. Call your State Representative, or Senator, or Governor, ask him or her to issue a statement supporting Stem Cell Awareness Day, celebrating September 23rd official SCAD for your state. (They do this all the time, by the way, for industries important to their constituencies: there is Spinach appreciation day, etc. And it can vary year by year, so don’t worry about all the good days being taken).

6. Call your local college, ask if they have a stem cell science program, and if not, why not? Plant a seed!

7. Google “biomedicine” in your state, see how many companies there are in the Life Sciences in your area. Find a biomedical company (many of them are small right now, Mom and Pop companies, just starting off), ask if they give tours, or literature, find out a little about what they are doing. Stem cells are not only good, but good business too!

8. Join a patient advocacy group, one related to a condition whose cure you support. If you already belong to a group, ask the leadership to send an E-blast to everyone, reminding them that September 23rd is Stem Cell Awareness Day.

9. Help your newspaper write a story about your family member’s (or your) medical condition and your hopes for regenerative medicine. That is easily done. Make up the news release (see below), call the news desk, ask who does feature stories, talk a little bit, ask if you can send them a newsrelease—they are almost guaranteed to say yes (remember 70% of all newspaper stories are planted by someone outside, who calls up and requests the article.)

10. Write a one-page (250 words) family letter to the local newspaper, about your hopes for stem cell research—and reminding everyone that September 23rd is Stem Cell Awareness Day. And– SEND THAT MESSAGE (and this one, too, please) TO YOUR E-LIST.

11. Call your local radio talk show host, and make a comment on stem cell awareness. Ask them to do a show on stem cell research.

12. Contact the White House comment call number: (Comments: 202-456-1111) and remind President Obama that September 23 is Stem Cell Awareness Day—and thank him for keeping his campaign promise to reverse the Bush stem cell restrictions.

13. Paint a Stem Cells for Hope picture and send an electronic copy to CIRM.

14. Purchase a book about stem cells—nothing sends a message to publishers faster than a bought book—we need to encourage the sharing of stem cell information in every way.

15. Participate in the Great International Stem Cell Poetry Contest!

P.S. Here is a special message from the California Institute for Regenerative Medicine.

Stem Cell Awareness day is about outreach and education. The purpose of Stem Cell Awareness Day is to:

• Deliver information to the public about the science of stem cell research
• Raise awareness of the current state of research across all types of stem cell science
• Convey the future promise that stem cell science holds for a wide variety of therapies and diagnostic applications

Events being planned include:

In California: For Students:
On Stem Cell Awareness Day, CIRM will facilitate approximately 50 high school classroom presentations throughout the state by CIRM-funded stem cell researchers.

For the Public:
CIRM is working with stem cell researchers who have received Early Translational grants and patient advocacy groups to organize several public education events. These events will focus on specific applications of stem cells in treating disease.

Internationally: CIRM is working with the countries and organizations it collaborates with to organize additional activities for Stem Cell Awareness Day. This can include a range of activities such as: Public proclamations, symposia and workshops, outreach events, patient advocacy events.

CIRM is developing and hosting a Web site for Stem Cell Awareness Day –
http://www.stemcellday.com Please contact us at stemcellday@cirm.ca.gov to have activities added to the site.

*SAMPLE NEWSRELEASE

Headline: STEM CELL AWARENESS DAY CELEBRATED BY LOCAL FAMILY

Contact info: Your name, phone number, email

Event: The ________family has a special reason for celebrating the second annual STEM CELL AWARENESS DAY on September 23rd. That reason is hope.

Background: (briefly state your personal reason for supporting stem cell research, in my case, I am the father of a paralyzed young man.)

Reason the article is important: Last year America spent $2.3 trillion on health care costs; 75% of that mountain of medical expense was due to chronic (incurable) illness. Nothing lowers medical costs like curing a disease.

Last year, for the first time, Stem Cell Awareness Day was celebrated in Australia and America. The ________ family hopes everyone who believes in the possibilities of regenerative medicine will consider celebrating Stem Cell Awareness Day.

The __________ hopes the special day will revitalize all families whose loved ones suffer, and who deserve access to the best medical treatment American science can provide.

For more information on Stem Cell Awareness Day, email stemcellday@cirm.ca.gov.

Read Full Post »

WHY WE FIGHT: Drew McPherson, and This Sunday

http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=1725&CFID=9437781&CFTOKEN=54613637

If you click on the above, you will see a picture of my friend Drew McPherson.

Drew is intelligent, friendly, cheerful, determined, athletic— –and paralyzed.

He dived into a river, and struck his head on something underwater.

Just like that. Like turning off a lightswitch. One instant he was a young athlete, capable of anything physical, running, leaping, diving: the next, his neck was broken, the spine was damaged, and his body could not obey his commands anymore.

Suddenly, so many things he took for granted—dressing, showering, the bathroom—are not simple anymore.

But Drew is tough. He is exercising, continuing his college (trigonometry!) with a perfect 4.0 GPA; he is not sitting back waiting for a miracle. He is going on with his life.

Unfortunately, insurance will not cover his therapy, nor the equipment he needs to drive.

In a perfect world, this would be taken care of; but it’s not.

So, Drew is involved with a fund-raiser, a walk-a-thon. It is this Sunday. It is a professionally done affair, with the cooperation of the NTAF Southwest Spinal Cord Injury Fund, in honor of Drew McPherson.

No notice, I know. Also, we are all feeling the pinch financially.

But if you can chip in ten bucks, I will too. If you go to the website, you can click on the donate now button.

Or, send a check to his Aunt, Marsha Joyce, 7250 Walnut Drive, Fair Oaks, CA 95628 (Make the check out to her.)

Until there is a cure, there must be care. If we stick together, we are strong.

P.S. Here is a note from Andrew.

Update and second annual ice cream social and walk-it-off-a-thon august 9th

Dear family and friends

Some of you I have spoken to recently and others of you I am sorry to say I have not, though I have been thinking of many of you. Given this fact let me start by giving you all a brief update on the past year.
Last fall I increased my class load at American River College by taking trigonometry, public speaking, weight training, and practicing rugby Thursday nights and some Saturdays. Our rugby team attended our first tournament in Reno were we got destroyed but it was fun and we learned a lot. I was pretty stoked too because I won my room fair back with a dollar in the penny slots. On top of school I continued going down to SCI-FIT in Pleasanton on Wednesday. I have been riding down with Matt, a good friend from the rugby team and fellow shake a leg participant, which has been quite convenient. We have spent many long car rides reminiscing about how great “shake” was. Sadly the program had to close given the economic climate. I have also been working with Cody, a physical therapy assistant, on most Saturdays and Sundays to supplement the rest of my workout regime.
Our family spent a quiet Christmas at home which was a relief after a hectic fall schedule. When January came around I chose to further increase my class schedule which totaled 14 units. My schedule included pre-calculus, intro to US government, advanced composition and critical thinking, weight training, and a one-on-one program with an English professor working on writing and study skills. Rugby also continued and we held our first annual sacrament rugby tournament in January. The tenement was a lot of fun and we won our first game. I also have continued working out at SCI-FIT in Pleasanton and with Cody weekly. With this schedule it seemed that between working out and school I never left my room for studying, but it paid off in the end because I’ve been able to maintain my 4.0 GPA thus far in my college career.
By working out like a madman all year I have seen my overall strength improve which has enabled me to do more things for myself leading to my ultimate goal of independence. But in the last month I have seen a decrease which baffles both me and the doctors. Hopefully this will not be much of a setback in the long run. One goal that I spoke about last year which has not manifested as of yet is driving though I’ve made innumerable phone calls and gone to Chico to get a preliminary assessment for the van. I was told that to get the van setup so that I could drive, it would cost upwards of $16,000 which is down from $40,000. This is an additional reason why I have worked so hard to increase my strength to reduce the equipment I need and thus the cost for me to drive.
This brings me to the reason why I am writing you, to ask for your continued support as well as a sincere desire to let you know how I am doing and stay in touch with all of you who have so kindly supported me and my family through this journey. For this reason I am pleased to announce our second annual ice cream social and walk-it-off-a-thon. It will be held august 9th in Hagan Park, Rancho Cordova (the same place as last year but a more accessible site). There will also be a golden raffle with a grand prize of one weeks vacation acomidation to vertualy anywhere like mexico, hawaii palm springs. Flyers should be coming soon with more details so keep your eye out. I will be attempting to put this on on my own this year so if you are interested in helping, have ideas or suggestions please let me know.

Please pass this on to anyone you think might be interested.

Thank you for all your support.

Sincerely

Drew McPherson

Read Full Post »

UNCONSTITUTIONAL? Changes to California Stem Cell Program May Require State Vote

By Don C. Reed

It was just a small office conference room in the city of San Francisco, with clean white tables and simple chairs.

But on every table was a microphone.

And what was decided between the hours of 10:00 and 11:30 AM, on July 16th, 2009, could affect the lives of millions of suffering human beings.

Seated at the front table were Bob Klein, Art Torres, and Jeff Sheehy. Attending by phone were Duane Roth, John Reed, Joan Samuelson, Claire Pommeroy, Susan Bryant, and Francisco Prieto, and maybe one or two others I did not type fast enough to catch.

This was the legislative subcommittee of California’s stem cell program.

Today they would decide how to respond to an 84 page report from the Little Hoover Commission (LHC), a catalog of criticisms and suggestions for changes in the law. The report was titled: “Stem Cell Research: Strengthening Government to Further the Voters’ Mandate”. (Please note that word “Further”– it will be important later on.)

The meeting began with a shock. Bob Klein relinquished the chairmanship of this important committee, passing the baton to vice-chair Art Torres.

Former California Senator Torres is of course no stranger to the politics of hope. He has fought for people’s rights for decades, including work with Cesar Chavez and the United Farm Workers.

But nobody knows the stem cell program like Bob Klein. True, he would retain the chairmanship of the larger governance board, the Independent Citizens Oversight Committee (ICOC), but why give up this small but crucial responsibility?

Four words: “my wife’s health challenges” was all he said, but the room went still. Danielle Guttman-Klein works on her environmental programs with the same enthusiasm and dedication her husband brings to stem cell research. When you meet her, vibrant, athletic, a smile like the young Doris Day– it is hard to believe she is battling cancer.

New chairman Torres said he had not yet voiced his opinions on the report, and would hold his comments till after everyone else had their say.

Bob continued. Some of the Little Hoover Commission suggestions were intriguing, he said, worthy of careful consideration. Others “should not be on the table at all, or they might sweep everything away”.

CIRM Attorney James Harrison spoke. This is the man who helped Bob Klein write Proposition 71, so he knows it backwards and forwards. He works with Remcho, Johansen & Purcell, one of two law firms associated with Proposition 71 since it began. The other is Nielsen, Merksamer, Parrinello, Mueller & Naylor. Both firms provided documents.

There were three sets of changes suggested. In the 90-minute meeting, we could only discuss one, the most serious. Enacted into law, these changes would:

1. Cut our board of directors in half, from 29 members to 15.

2. Reduce board members’ terms to 4 years, instead of the current 6 or 8.

3. Let the Governor choose most of the board: 11 of 15 members.

4. Eliminate the Chair and vice-Chair’s statutory powers.

5. Allow the new board to elect the chair and vice chair only from its members.

How serious are these changes?

According to a public letter from California State Senator Dean Florez, Senate Majority Leader, these changes would “essentially re-write Proposition 71.”

They may also be unconstitutional.

Article II, section 10 (c) of the California Constitution sets guidelines for changing an initiative like Prop 71, the California stem cell program.

“The Legislature may amend or appeal…an initiative statute by another statute… only when approved by the electors unless the initiative statute permits amendment or repeal….” –emphasis added.

So they have two options:
1. set up another initiative to change the first, including a new vote of the people;
2. use whatever guidelines for change exist in the original law.

Option 1 is difficult. To “re-do” an initiative, the legislature has make up another initiative with the changes they want, get it approved by Assembly and Senate, (possibly the Governor? I am not sure) and finally present it to the voters—who may not appreciate this flouting of their will.

Option 2 is to use guidelines for amendment already in the initiative.

Does Proposition 71 have provisions to allow such changes? Yes, but with conditions.

“…Proposition 71 can only be amended by the Legislature “to enhance the ability to further the purposes of the grant and loan programs created by the measure”…(Section 8.) Amendments that do not further the purposes of the grant and loan programs created by Proposition 71 can only be adopted by another vote of the people.”—Nielsen, Merksamer, et al.

Remember that word “Further” in the title of the Report? That is a politically loaded term, since any new laws affecting Prop 71 must “further the purpose” of the initiative.

Would the first group of changes meet that standard, and “further the purpose” of the initiative?

In a word, no.

Proposition 71’s purpose was to make grants and loans to advance stem cell research, in a non-political way. That is clear from any reading of the Proposition 71 language, ballot materials, campaign literature, and the non-partisan legislative analysis provided by the state.

California voted for our program to be set up in a very specific way: so politics would not interfere with research for cure. Our families deserve the best medical treatments science can provide—not what is ideologically acceptable.

In Proposition 71 the power of selecting the governing board was spread widely, to prevent any individual from imposing political domination over the research.

Some of the LHC suggestions would politicize our program.

For example: on their suggested new and smaller board of directors, 11 of 15 members (73%) would be chosen by the next Governor.

What happens if that Governor was against embryonic stem cell research?

California has been fortunate in Governor Schwarzenegger’s steadfast support of the research. He has stood by our stem cell program again and again, even when that was not politically easy. In the history of medicine, he has earned a place of honor.

But another Governor might oppose the research. Last year’s national Republican platform called for the criminalization of embryonic stem cell research. A governor who supported that extreme position could easily “stack the deck”: choosing board members who would push the research into a direction not intended by the voters. Or, the new Governor might decide our state “can’t afford it”. With the power of the board, they could deliberately slow down the program–or reduce our funding, as was suggested during the LHC hearings.

The conversation began. (My comments, as always, are taken from memory and notes; if I mischaracterize anyone’s position, I hope they will straighten me out on the matter.)

To fight, or not to fight; that was the question, it seemed to me. Should the legislative subcommittee accept or reject these five most serious LHC suggestions?

Board member Jeff Sheehy appeared to regard the Little Hoover Commission as an opening position, details to be worked out later. He credited the California program as something wonderful, which should be continued on a long-term basis, and that meant having the flexibility to adjust along the way. He seemed willing to consider some of the LHC recommendations.

He also saw a need for change right now. For instance: patient advocates on the board cannot have substitutes, which wreaks a hardship. Joan Samuelson, for example, has Parkinson’s disease. It is sometimes difficult for her to deal with the condition as well as the work; she and other patient advocates should be allowed a substitute for board meetings when the need arises.

That is perfectly reasonable. But do we need to revamp the entire program to accomplish it? We could do what our governing board usually does, “agenda-ize” the problem, put it on the official calendar for discussion, and then work out an answer. That is what the ICOC is all about.

Jeff Sheehy questioned the large size of the present board, pointing out that it can be difficult to get the “quorum”: enough eligible folks to make an official vote.

Some meetings do have a little frantic scurrying around to get enough folks in the room. These are top executives, all with crammed schedules, and it is not always easy to get them together. But they cooperate, and it works out. I doubt there have been more than three or four votes that had to be rescheduled; this inconvenience seems a small price to pay, compared to the benefit of having some of the best minds in the nation working together. (To see the caliber of our board, go to http://www.cirm.ca.gov, and look up their short bios; I guarantee you will be impressed.)

Bob Klein spoke on the positive aspects of a large board of directors. Our 29-member board was patterned after the similarly-sized (26 members) University of California board of Regents. Our board setup allows a broad diversity of opinions, virtually guaranteeing better outcomes. Also there is a lot of work to be done; a smaller committee might not accomplish all the chores. As it is, the board’s ten patient advocates are spread thin. They must be represented on several committees, and are overworked; to cut their number in half would aggravate the situation.

Dr. John Reed noted that any changes should be considered carefully, because sometimes what seemed like even a common sense alteration could have devastating consequences.

That made sense to me. For our program, the ICOC board is like the hull of a ship, on which everything else depends; weakening that would be like drilling holes in the hull.

Major changes also meant possible lawsuits. Joan Samuelson, an attorney herself, reminded us how lawsuits delayed our program before, draining our resources, slowing us down almost two years. The opposition’s lawyers were sure to go over any change “with a magnifying glass”, as she put it. They would search for the smallest detail which could work to their advantage, any foot-hold that could allow them to challenge us in court, to delay or deny our research.

We had a telephone call from Spain, where CIRM President Dr. Allen Trounson had been speaking at the International Stem Cell Research convention. He spoke with delight of the reception the California effort was receiving from the world. “Unprecedented level of support,” he said, and the smile in his voice came through, even over the static crackle of the phone.

Finally, Chairman Art Torres spoke. He said he had worked with the Little Hoover Commission before; they had the luxury of proposing all manner of changes, after which they could “wash their hands of the matter.” But we could not do that. Whatever changes were made, we would be stuck with. In regards to allowing the next Governor to appoint 11 of the 15 board members, Art was not in favor of giving such power to one person. As for the size of the board, Senator Torres had served on many boards, all different sizes, from as small as 3 members to as large as 75—more than double the size of ours. His thoughts on the ICOC? A highly successful board, he said; it had vigorous discussions, made solid, well-grounded decisions—“and at the end of the day, you guys still manage to genuinely like each other!”

And now a motion was needed, to be followed by public comment, and the vote.

Bob Klein made the motion: that the legislative subcommittee should reject this group of changes on grounds they might be unconstitutional, or require another ballot measure. A suggestion was offered by board member Dr. Claire Pommeroy, that the words “on the basis of information received from counsel” be inserted into the motion. This was accepted by the maker of the motion as a friendly amendment.

Then it was public comment time.

David Jensen of the California Stem Cell Report noted that the position of the law firms cited (that the LHC proposals could be unconstitutional without a state-wide vote) was only a legal opinion; other law firms might study the same information and come to a different conclusion.

Fair enough: anyone who listened in on the Sotomayor hearings can vouch for the difference of opinions possible in any interpretation of law.

On the other hand, both of these law firms have been connected to the stem cell program since its inception. It is their business to keep track of every detail of any argument which might affect our stem cell program. Their arguments are backed up by solid legal precedent.

When it was my turn, I quoted Winston Churchill, who said:

“Democracy is the worst form of government, except for all the others”.

There is room for improvement in everything, from democracy itself to our stem cell program.

But it must be admitted the California Institute for Regenerative Medicine is doing a terrific job.

Even the Little Hoover Commission report begins by acknowledging the California program as the “envy of the world… The institute…has directed more than $700 million toward scientific exploration, in the process leveraging an additional $900 million in private and institutional money that has built new facilities, lured scientists to California and spurred growth in the state’s life sciences industry.”

In other words, Prop 71 has done exactly what it promised to do—only better. Not only did it advance stem cell science and the biomedical industry, but it even brought in an unexpected bonus of $900 million dollars!

Why should major changes be imposed on such an outstanding program?

Does the doctor say to a healthy patient, “Okay, you are in great shape—let’s do major surgery?”

As the old saying goes, “If it ain’t broke, don’t fix it!”

At last, everyone had had their say. A roll call vote was taken.

The first group of changes was rejected: 8-0, with one member abstaining.

What happens next?

August 6th is the next legislative subcommittee meeting, to discuss more aspects of the Little Hoover Commission’s report. As always, you are invited; see http://www.cirm.ca.gov for information.

On August 19th and 20th, there will be a meeting of the full ICOC, where the recommendations of the subcommittee will be discussed, and our governance board will take a position.

I will have to miss that meeting. Gloria and I are celebrating our 40th wedding anniversary by going to Paris. It is financially foolish, we can’t afford it, but we are going anyway. So while you folks are working, I will be in the city of lights, eating French pastry, and trying to work up my nerve to ride that rickety elevator up the most beautiful building in the world, the Eiffel Tower.

But in my suitcase will be the LHC report. I will study it every day. And, to steal a line from America’s favorite stemcell-supporting body-builder/moviestar/Governor: “I’ll be back.”

I would not want to miss the coming battle over the Little Hoover Commission’s proposed changes; it will be a long fight, perhaps our most difficult. The LHC report has gathered many (if not most) of the criticisms that have been thrown at us since 2004, seemingly accepting them all as gospel, and turned them into recommendations for change—to be imposed by law. This next stem cell battle will be like facing all the previously defeated challenges, again.

It is a trifle irritating. After more than a year’s hard work, Proposition 71 won the election. After almost two years in court after that, we beat the lawsuit challenges, including appeals all the way to the California Supreme Court. Since then, our program has survived who knows how many audits, investigations and oversight procedures—not to mention the seven bills previously offered to “improve” us– and now, another one, potentially combining elements from all the others?

Unfortunately, that would appear to be the situation. The LHC-begun law may not happen right away, but it seems to be well into the planning stages.

At a recent committee hearing for another bill (the excellent stem cell education bill, SB 471, from Senators Gloria Romero and Darrel Steinberg) Senator Elaine Alquist spoke about using one of her bills (probably the half-completed SB 343, which is presently about stem cells and intellectual property) to carry some or all of the Little Hoover Commission changes.

What does that mean for us, the patient advocacy community?

We will do as we have always done: study the bill when it comes, discuss it with friends, decide if it is a threat to the California research program– and then take part in the democratic process.

A Little Hoover Commission member told me that one of our options was simply to ignore them; I told him we would never be so rude—nor can we afford to be.

For this is no philosophical debate. This is binding law, intended to permanently alter our shining stem cell program.

The California Institute for Regenerative Medicine offers hope to all who suffer chronic disease and disability.

This is about people we love: like Danielle Guttman-Klein and my sister Barbara, both of whom have cancer, and my son Roman, who is paralyzed, and our little friend Pranav, four years old, who has spinal muscular atrophy—and millions of other folks, your relatives and mine, our friends, our neighbors, ourselves—this is for everyone.

The California program is worth every effort to defend.

P.S. Available at the meeting was an open letter from California Senator Dean Florez, Senate Majority Leader, and a member of the Little Hoover Commission. Portions of it follow below.

Senator Florez states:

“… I would like to note, for the record, my concerns regarding the (Little Hoover) Commission’s report on the California Institute for Regenerative Medicine (CIRM)…

“…the report recommends reducing the size of CIRM’s governing board from 29 members to 15 members and concentrating the power of appointment to the Governor, who would be responsible for appointing 11 of 15 members. The report also recommends stripping the power of the Lieutenant Governor, the Controller, and the Treasurer to make appointments eliminating the statutory duties of the chair and the vice chair….

“…the recommendations, if adopted by the Legislature, would essentially rewrite Proposition 71. (emphasis added, DR) In adopting Proposition 71, the voters specified the governance structure they desired and limited the Legislature’s ability to amend the law. Under Proposition 71, the Legislature may only amend the law to enhance CIRM’s ability to further the purposes of its grant and loan program. The Commission’s recommendations appear to be inconsistent with the voters’ intent and therefore could only be accomplished by proposing another ballot measure…

“…the Commission’s recommendations appear to lack a firm foundation. For example, when I asked (at an earlier meeting—DR) why a 15 member board was inherently better than a 29 member board, Commission members responded that an academic expert on non-profit governance had testified that the ideal board size was seven to nine members, but the expert himself stated that he did not have sufficient knowledge of CIRM’s operations to opine about the ideal board size for CIRM…

“…I am also concerned about the Commission’s attempt to shift power over the agency to the Governor. … CIRM was designed to be an independent agency. Proposition 71 therefore dispersed appointment authority to the Governor, Lieutenant Governor, the Controller, the Treasurer, the Legislature, and UC Chancellors. By concentrating appointment authority in the Governor, the Commission would undermine the careful and deliberate balance struck by Proposition 71. In a controversial area like stem cell research, such a change would threaten the independence that CIRM needs to ensure the success of its mission.

“Finally, I am concerned about the Commission’s apparent rush to conclude its report. As one member said at the meeting, five minutes and a sandwich is not adequate time for Commission members to absorb the information that was presented. While I appreciate the substantial effort that Commission members and staff put into drafting the report, I am concerned that due to its rush to approve the report, the Commission gave disproportionate weight to CIRM’s critics and did not consider a broader range of views on the complex issues that are the subject of the report…”

Dean Florez, Senate Majority Leader, State Capitol, Sacramento, California

Read Full Post »

Follow

Get every new post delivered to your Inbox.

Join 321 other followers