21 July 2013

Roman Reed's request for support

I have been trying to offer the Reed's as much support as possible in winning new funding for the Roman Reed law to cure paralysis and Roman has sent a long a special request.

The Reeds appreciate all our help in sending our emails and faxes to support this law for a million a year in paralysis cure spending. Our work has helped in getting it through the California Assembley 69 to 3 and most recently 9 to nil in the Senate's Health Committee. They also appreciate all our great comments on the card we're working on to to present the Governor when the bill is ready for his signature (he vetoed it last time).

Roman is now asking for letters. Yes, the real paper and pen ones (well, the signature part anyhow). Roman's email with all the information follows below and he believes that a proper letter written to the California Secretary of Health will go along way in making sure the bill is signed this time.

So get out your pens and start writing!

Here's the information below.
Dear Friend of Research to Cure Paralysis:

May I ask you to write a brief letter to Diana Dooley, California’s Secretary of Health, in support of a bill to fund paralysis cure research ?

Assembly Bill 714 (Wieckowski, D-Fremont) would provide one million dollars a year for research to cure paralysis. The bill is moving ahead strongly, having passed the Assembly with overwhelming bipartisan support (68-3) and its first Senate hearing (Senate Health) with a 9-0 vote of approval.

The bill would restore funding for the Roman Reed Spinal Cord Injury Research Act. Although a highly successful program, renewed twice in 2005 and 2010, the second renewal came with no funding. The economy was facing difficult times, and funding was removed for budgetary reasons. We are trying to put it back.*

Last year our bill went all through the Assembly and Senate, but was vetoed by Governor Jerry Brown. He did not approve of our funding mechanism (a $1 traffic ticket fee increase) and said the program should be financed by the General Fund.

We have naturally taken his advice, and this year, if AB 714 passes,*California’s paralysis research will be paid for by the General Fund.
But we dare not leave anything to chance.

Our best hope to convince Governor Brown is through the Secretary of Health, Diana Dooley, whose opinion the Governor highly respects. We need to provide Secretary Dooley with letters of support.

Please send them by ground mail, on your group’s letterhead, with an email copy to me, please.

The Secretary’s address is:
The Honorable Diana S. Dooley,
Secretary, California Health and Human Services,
1600 Ninth Street, Room 460,Sacramento, CA 95814

Below are some information points which might be useful.***

Support for Assembly Bill 714 (Wieckowski, D-Fremont), spinal cord injury research

AB 714 would restore funding ($1 million annually) to the Roman Reed Spinal Cord Injury Research Act, (RR Act), named after a paralyzed Californian, Roman Reed.
Although the RR Act was successful (renewed twice by near unanimous votes), in 2010 California faced difficult times, and the funding for the program was removed. For both practical and humanitarian reasons, it should be restored.

Financially, the RR Act has made an actual profit for California. Over its ten year history, it spent $15 million of the taxpayer’s money—and attracted $84 million*in add-on grants from the National Institutes of Health (NIH) and other sources—new revenues for the state.

It has provided jobs for over 300 scientists and lab technicians, and is supported by the California Health Institute, the state’s largest biomedical organization, as well as other biomed organizations like Bay Bio and Connect.

AB 714 has strong bi-partisan support, having already passed the full body of the Assembly (68-3) and the Senate Health Committee, 9-0.

With new scientists having difficulty obtaining grants (the average age for receiving a first NIH grant is now 44) the program answers a real need. A scientist succeeding with a $20,000 or $50,000 grant from the Roman Reed Act can then approach larger agencies with a proven track record, that all-important initial data. Many young scientists have done exactly that, as can be verified by a glance through our key document, which can be downloaded at:


While the overall program is administered through the UC system, the Roman Reed Core Laboratory is run by Dr. Oswald Steward at the Reeve-Irvine Research Center at UC Irvine. Here scientists can learn how to run a spinal cord injury research experiment, with access to the latest equipment, including a half-million dollar microscope. Here too, patients and advocates can meet with scientists and discuss mutual concerns and suggestions. Twice-annual “Meet the Scientists” nights are well-attended and productive.

RR Act researchers have produced 175 published scientific papers, each a piece of the puzzle of cure.

The problem is gigantic. America’s 5.6 million paralyzed children and adults (nearly 2% of the population, roughly one in fifty) are currently told there is no hope they will get well: ever.

The financial burdens are staggering. The medical costs of just the first year of a paralyzed person’s care? Roughly one million dollars, the price of the entire paralysis program.

Lifetime medical expenses for a paralyzed individual can reach $3-5 million, forcing many paralytics onto governmental relief. One estimate of the hidden costs of paralysis adds up to $5 billion a year for California alone—the equivalent of $131.57 from every child and adult in the state. (based on 760,000 paralyzed Californians, and a conservative cost assessment of half a million dollars lifetime medical costs, over a 70 year life span.)

On a positive note, due to the centrality of the spinal cord, research on paralysis offers benefits to all nerve-related disorders: traumatic brain injury, Alzheimer’s, ALS, Parkinson’s, multiple sclerosis, spina bifida, muscular dystrophy, spinal muscular atrophy, and more.

One of the projects California funded involved the first use of President Bush’s approved embryonic stem cells, and was so spectacularly successful it was featured on the 60 MINUTES television show. But only 4 of 129 projects involved the special cells; most of the work funded is “the everything else” which must be done for therapy and quality of life issues-- everything from skin sores which can rot the flesh down to the bone, to potentially fatal blood pressure irregularities, to bowel, bladder and reproductive problems, chronic pain, the need for low-cost rehabilitation methods—the program takes on many challenges.

One key component is the need for advanced (and less expensive) rehabilitation therapy. For instance, you may have seen paralyzed Superman Christopher Reeve being hoisted over a treadmill, and having his feet moved by attendants. This is not cheap. But the RR Act has been developing ways to use robotic shoes to move the feet, so the patient can do his/her strenuous workouts in safety, and without the need for as many attendants.

Even the smallest progress can mean a major improvement in patient quality of life. For example, when Roman Reed regained triceps muscle function on the backs of his arms, that allowed him to drive, instead of needing a paid attendant. Such cost savings can be astonishing.