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UTMB's Corson wants to open his own clinic on the side. According to his research numbers, it costs $150 for each dive at UTMB. He wants to staff a facility with a lot of trained medical volunteers and offer it to patients at $75 a dive. When word of this got out on the Internet, "I got more than 750 calls in one night," he says. Several doctors told him they would be happy to send patients to him.
But Corson's dreams were brought to an abrupt halt in the latest newsletter from the Undersea Hyperbaric Medical Society, an international professional association. Dr. Caroline E. Fife, UHMS president, reported on a meeting with the FDA about the use of hyperbaric chambers. Fife wrote that promoting or advertising hyperbaric oxygen treatments for anything other than FDA-approved treatments would be illegal. Even if a center made it clear that some of the treatments were experimental, this would still promote the treatment and thus violate FDA rules, Fife said.
This latest holdup "is bullshit," Corson says. He explains that the shunts used by cardiologists to do open-heart surgery are FDA-approved only for knee work, so their use in hearts is technically off-label.
A few insurance companies actually will pay the hyperbaric costs, Corson says, if it can be proved how much a patient's condition has improved and that money is being saved in treatment costs in the long run.
There are a lot of for-profit hyperbaric oxygen treatment centers, Corson says, not all of which are being operated in a very scientific manner. If there were enough science-related centers started like his proposed one, research would be sped up, Corson says. With a lot of centers simultaneously doing studies, there would be a much larger statistical group from which to derive data.
Of course, people (like Michael Jackson) can buy and risk using their own hyperbaric chambers. "There was a guy in Canada who had a hyper/hypobaric chamber in his garage. He was using it to treat his migraines," Corson says. "He died in there."
Take to the Internet and you'll find impassioned pleas asking parents to mobilize on behalf of hyperbaric treatments. Go to a special section of the KidPower Home Page (www.geocities.com/Heartland/Village/9021/hbo4rkids.html) and you'll be asked to help persuade government officials to get the National Institutes of Health to look at case studies and then back additional research so the FDA will approve hyperbaric therapy for cerebral palsy.
"Once approval is gained by the FDA then the price should come down or at least insurance will help to cover the expense. It is not right that we have to deny our children a chance at higher functioning because a treatment that is working for others is denied to us," the site reads.
The MUMS site calls it the "HBO Movement" and wants the treatment approved so insurance and Medicaid will cover it. "If the preliminary studies are any indications, HBOT will eventually become a treatment of first choice for brain damage and will be covered by insurance and Medical Assistance. Parents will then be able to go to safe hospitals and clinics and get medically supervised affordable treatments for their children," writes Julie J. Gordon, director and founder of the MUMS network.
Barrett wants to do another hyperbaric study on children. "We're not able to predict right now who's going to gain and who's not going to gain," he says. The research physician's measured approach, of course, conflicts with parents wanting help now. Elizabeth DeLuca, who greatly admires Barrett, argues that the treatment is routinely used in Europe and Canada on children. "We're too cautious," she says.
But the last thing Barrett wants to do is be one of those medical researchers announcing a new cure, only to see it fall apart under scrutiny. "Physicians don't want to be seen as snake oil salesmen." His results, he says, "show us there's a glimmer of hope." But he wants to collect a lot more data.
"We do want to treat the children. And we want it to be safe," Barrett says.
Parents like Elizabeth DeLuca want it to be safe, too. But they want it to be sooner. Elizabeth looks at Caroline racing along with the help of a walker on wheels and has all the proof she needs. While waiting on more tests and more research, people with brain injuries are costing taxpayers millions of dollars yearly in treatment, she says. Not to mention the cost in lives being lived out in very limited ways -- when there's a possible cure sitting right out of reach.
And that's what Elizabeth wants to change. She wants her child to be special, but not "special" in the sense that she gets life-improving treatment denied other children. She wants all the children to get it, every one of them. Whether they have money or not. Whether their insurance companies will allow it or not. Whether they are the lucky winners of a medical research lottery that lets them get treatment while others linger unharmed but unimproved.
That's what Caroline wants, too, Elizabeth says. Because they're together in this. If anything good is to come out of her family's own trials with the brain injuries of their youngest member, let it be as much help as possible for the rest of the children in this country.
Push those legislators. Push the National Institutes of Health. Push the almighty FDA. Push the insurance companies.
Demand that they realize: Hustle time is now.
E-mail Margaret Downing at firstname.lastname@example.org.