INDEPENDENCE DAY—from Paralysis?
By Don C. Reed
Imagine if the freedom to move your body was taken away, and you were imprisoned by the invisible chains of paralysis.
Whether caused by stroke, spinal cord injury, multiple sclerosis, muscular dystrophy, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), Spinal Muscular Atrophy or other condition, paralysis is far more common than generally realized. Endured by five and a half million Americans—nearly two per cent of the population– paralysis is a drain on the family and the economy, as well as the individual.
On July 3rd, the day before Independence Day, the California Senate Health Committee will hear a bill which fights for freedom from paralysis.
AB 714 (Wieckowski, D-Fremont) would provide one million dollars annually for the Roman Reed Spinal Cord Injury Research Act of 1999, partially restoring its original funds.
For ten years, “Roman’s Law” (named after my paralyzed son), has been hugely successful. In financial terms, it “turned a profit”, bringing in more than five times its cost: leveraging $15.1 million to an additional $84 million—attracting federal dollars in add-on grants– new money for the state.
More important was the progress toward our long-term goal of getting people out of wheelchairs.
Small but effective, the RR Act funded research leading to the world’s first attempt to heal damaged spinal cords with embryonic stem cells. But while spectacularly effective, the new stem cells were only a small portion (4 of 129 projects) of the effort. The RR Act focused primarily on the “everything else” that must be done: struggling with problems like potentially fatal blood pressure irregularities, bowel and bladder problems, cheaper ways to perform vital rehabilitation and much more.
The program produced 175 peer reviewed scientific papers, a small library, seeking to share knowledge of what works and what doesn’t, so scientists who follow will build on their accomplishments, and avoid their mistakes.
Three hundred scientists (many quite young) benefited from our system of small grants. It is extremely hard for new scientists to obtain funding. In 1980, the average age of a scientist getting his/her first grant was 36; today, 44. But with success on a small Roman Reed grant, including that all important “initial data” validating their approach, the chances for larger grants greatly improve.
With support from both sides of the aisle, the program was unanimously renewed in 2005 and again in 2010—but the second time the economy was in a rough patch, and our funding was removed.
So we came back the next year and tried again. With the leadership of Assemblyman Bob Wieckowski, the backing of patient advocate groups like Unite2FightParalysis, friends in the biomed community like the California Health Institute, stalwart friends like Karen Miner, Fran Lopes and Susan Rotchy, not to mention the indefatigable energy of Roman, who refuses to be limited by paralysis, we developed an alternative method of funding.
In 2011, we offered a bill to fund the RR Act with a traffic ticket add-on of $3. Since car crash is a major cause of paralysis, it made sense bad drivers should help pay the cost of cure research. However, though we passed two committees, the third (Appropriations) shot us down, denying the bill.
In 2012, a similar but smaller bill, ($1 per ticket) made it through both houses of the legislature, Assembly and Senate. Unfortunately, Governor Jerry Brown disapproved of the traffic ticket increase, saying the program should be paid for from the general fund.
In 2013, we are back once more. This time, the mood in the Capitol is different, more hopeful, and there is a little money in the till.
To hopefully meet the Governor’s concerns, we made it a straight funding bill, two million a year from the General Fund. The Assembly Appropriations committee okay’ed us for half—one million dollars a year.
The entire Assembly voted on our bill, and approved it, 64-0.
Now we must make our way through the Senate. If we meet with positive results, the bill will be brought before the Governor once more.
Want to help? It is not difficult. Fifteen minutes would make a real difference.
We need the advocate’s tool: the one-sentence power letter.
You’re free of course to make your FAX or e-mail as long as you want. But all the letter really needs is:
Contact information at the top of the page, including your phone number. They will almost certainly not call you, being invariably hard-pressed for time, but the number lets them know you are a real human being, and not some computer program.
Below that is your greeting, subject heading and a key sentence or two. Something like this:
RE: Support for Assembly Bill 714 (Wieckowski) to be heard on Senate Health Committee, July 3
Please vote YES on AB 714, to fund the Roman Reed Spinal Cord Injury Research Act.
Name at the bottom, cut and paste the message, and FAX (best) or e-mail it to the nine Senators below. If time is too short, just reach out to the Chair and Vice Chair.
SENATE HEALTH COMMITTEE
Chair: Ed Hernandez, ROOM 2080,
Ph. 916-651-4024, FAX 916-445-0485, Senator.Hernandez@senate.ca.gov
Vice Chair: Joel Anderson, ROOM 5052,
Ph. 916-651-4036, FAX 916-447-9008, Senator.Anderson@senate.ca.gov
Jim Beall—ROOM 2068,
Ph. 916-651-4036, FAX 916-323-4529, Senator.Beall@senate.ca.gov
Kevin DeLeon—ROOM 5108,
Ph. 916-651-4022, FAX 916-327-8817, Senator.DeLeon@senate.ca.gov
Mark DeSaulnier—ROOM 5035
Ph. 916-651-4007, FAX 916-445-2527 Senator.DeSaulnier@senate.ca.gov
Bill Monning—ROOM 4066
Ph. 916-651-4017, FAX 916-445-8081 Senator.Monning@senate.ca.gov
Jim Nielsen ® ROOM 4062,
Ph. 916-651-4004, FAX 916-445-7750 Senator.Nielsen@senate.ca.gov
Fran Pavley, ROOM 4035
Ph. 916-651-4027, FAX 818-876-0802 Senator.Pavley@senate.ca.gov
Lois Wolk—ROOM 5114
Ph. 916-651-4003, FAX 916-323-2304 Senator.Wolk@senate.ca.gov
Help us cure paralysis in our lifetime—for an Independence Day the world will celebrate.