POSTED ON MAY 21, 2008:
State invests in cord blood bank and potentially healthier future with passage of HB 3060
At first glance, Dallas Hextell is just like any other two-year-old. He laughs, he plays, he throws tantrums, and he walks pretty well for someone whose legs are newer than a lot of people's running shoes.
If not for the recent national media coverage of his condition and the experimental treatment he received for it, most people wouldn't know he'd been diagnosed at eight months old with cerebral palsy, a non-progressive disability affecting a person's motor skills, balance and posture, resulting from damage to the part of the brain responsible for motor functions.
Officially, there is no cure for it, but its symptoms can be managed and worked-around through various treatments and therapies, which make it the second most expensive developmental disability to manage over the course of one's life (it's second only to mental disabilities in cost).
While many of those treatments only manage the symptoms of cerebral palsy and take work, time, and hardship for sufferers to learn to compensate for their lack of motor abilities, little Dallas saw a dramatic turnaround in his symptoms only five days after receiving his treatment.
Previously, he was unable to hold his head up straight, to laugh, clap, communicate, or walk without assistance and a walker, but less than a week after treatment, he could walk by himself and laugh and talk like any other toddler his age.
His doctors will continue to monitor him, but they predict that by the time he's seven years old, he might show no signs at all of ever having been diagnosed with cerebral palsy.
If that turns out to be the case, he'll be cured of a heretofore incurable disease.
His treatment was a one-hour procedure and part of a clinical trial at Duke University in which he was injected with his own cord blood, which is rich in stem cells. The cord blood traveled to his brain and quickly lessened many of the symptoms with which he'd struggled for the entirety of his young life.
This was only possible, though, because his parents had the foresight, and the means, to shell out an extra $2,000 when he was born for a procedure not covered under insurance, that being the preservation of his cord blood, which otherwise would have been discarded as medical waste.
"It is amazing to see the difference in this little boy now and what he was before the cord blood treatment," Oklahoma state Sen. Jay Paul Gumm, D-Durant, told UTW.
His comments came after he finally managed to get a law passed which he hopes will make such a miracle cure available to all Oklahomans who need it.
"I think you're going to see that stem cells from cord blood are the next great advance in medical science. We are seeing more and more maladies that may be treated by adult stem cells. Right now, leukemia, some blood disorders, some cancers can be treated with stem cells," Gumm continued.
Stem cells have long been known to hold great promise for the treatment of a wide range of diseases and disabilities, but were highly controversial due to the destruction of human embryos required to obtain them.
But, the use of adult stem cells harvested from umbilical cords eliminates that particular controversy.
The use of donated cord blood is risky, though, due to the possibility of genetic rejection, which is why one's own cord blood is ideal.
This is why Gumm wanted to make it possible for every Oklahoma child's cord blood to be stored.
Gov. Brad Henry signed his House Bill 3060 into law last week, which he co-authored with Rep. Rebecca Hamilton, D-Oklahoma City.
The new law establishes a public cord blood bank, which will give every Oklahoma family the ability donate umbilical cord blood.
It directs the state Health Department to create the bank, but directs the state Commissioner of Health to investigate whether partnering with existing public cord banks would be more cost effective than starting one from scratch in Oklahoma.
The commissioner is required to report to the Legislature before next year's session begins, after which time Gumm said lawmakers will be able to determine when the cord blood bank will be up and running.
But, a public cord blood bank in Texas took about a year to become operational after similar legislation passed, he said.
While Hextell's near miraculous turnaround certainly encouraged Gumm, he said he came up with the idea long before Duke University began its clinical trials.
"Actually, this was something I came up with after my wife and I were expecting three years ago. We got all the literature from the private cord blood banks about all the tremendous benefits of cord blood banking," he related.
"But if you look at those numbers, real quickly you'll see that that's far beyond the ability of most Oklahoma families, especially a young family just starting out with a new baby," he added.
Typically, it costs $2,000 up front to save the cord blood, and $125 a year to store it.
"We felt it was important that every Oklahoma family has the opportunity to do this, and doing some research and studying, I saw that were a few public cord blood banks in the nation, including Texas, and I said, 'If Texas can do it, so can we.' And that's how the bill got started," Gumm continued.
After the bill passed last week, Gumm issued a statement "a long struggle came to a positive end," referring to the arduous process by which he managed to get his bill to the Governor's desk.
"That's my way of saying, 'This was tough' without saying, 'Dang! This was tough!'" he told UTW.
Gumm said he filed the bill last year in the Senate, but it "just fell off the radar in the House," he said.
"It wasn't given a hearing in committee, and it didn't go anywhere after that," he added.
This year, though, he found an ally in Hamilton, who managed to convince her Republican colleagues to include the bill among their priorities by giving it a hearing and sending it over to the Senate.
It passed the Senate unanimously and received only one "nay" vote in the House.
Rep. Ed Cannaday, D-Porum, was that lone dissenter.
"My concern was the fiscal impact," he told UTW in explanation.
On the House floor when he asked about the estimated $3.5 million price tag for the project, to be absorbed in Health Department funding, Cannaday said Hamilton was "flippant" about it.
"I don't agree with that fiscal impact report," Cannaday said she told him.
"I wasn't trying to make a major point against the bill, but we're struggling with funding, and we don't know what money is going to become available," he said.
In a discussion unrelated to Cannaday's objections, though, Gumm told UTW, "Of course, there's a lot of work that has to be done before we get to the point where we have to start spending money and gathering funding."
He said it will be funded by a combination of public/private dollars.
"That's the model we saw in Texas and it seems to be an extraordinarily effective one because, not only do you have public dollars kicking in, you get enormous buy-in from the private sector, and we're seeing that now with the cancer center and the diabetes center. Both of those have gotten private contributions along with the public dollars that have been invested in them," Gumm said.
"It's a model that's worked in Texas and is working in other areas of research here in Oklahoma, so we just followed that model," he added.
"I believe history will show this will be one of the most important bills ever passed by the Oklahoma Legislature," Gumm foretold.
"The list of things that can be done with this is only going to expand, and I believe health care is a right, and every Oklahoma family should be able to take advantage of those life-saving and life-improving therapies, not just those (who) can afford it," he added.
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