Swedish doctor says drug company won`t release meds that might get rid of brain tumors
The doctor in the article is from Swedish medical center in Seattle, WA, not from Sweden! He asked us for a grant to do this study but it was way too much money for us. We could have helped if the drug company donated the drug but it is an expensive drug. It is approved for viral infections, so it can easily be obtained off label, but some insurance companies do not want to pay for it for brain tumors since the FDA never approved it for brain tumors. And we still need proof that it helps.
Posted on: 09/04/2014
Swedish doctor says drug company won't release meds that might get rid of brain tumors
on September 2, 2014 @ 11:29 am (Updated: 12:16 pm - 9/2/14 )
Taken from the ROSSFIRE podcast featuring Dave Ross.
Dr. Charles Cobbs is a neurosurgeon at Swedish Medical Center, but not just any neurosurgeon. He is director of the Ivy Center for Advanced Brain Tumor Treatment and became famous as the man who linked some of the most stubborn tumors in the world to a virus.
His "aha" moment came when he noticed that most of his brain cancer patients were older, educated, and from higher socioeconomic backgrounds - people who'd been the beneficiaries of better hygiene growing up, which I pointed out to him is normally considered a good thing.
"I think that at certain times of your life you should, based on evolution, probably be exposed to certain bacteria and viruses, and if you don't get exposed at that particular time, your immune system might not be able to adapt or attack them or keep an attack ongoing for that virus," says Cobbs. "It was just a loose hunch, but I thought it was worth looking into."
He found that almost every brain tumor he examined tested positive for this particular virus. He didn't know how the virus might be causing the tumor, but he thought it might be worth trying to treat them with anti-viral drugs which have far fewer side effects than the usual chemotherapy.
But there's a problem: the most effective treatment is a drug called Valcyte, which is very expensive. Insurance won't pay for it unless it gets FDA approval.
But FDA approval requires extensive testing and the manufacturer refuses to provide test doses, says Cobbs.
"If you try to do the definitive study to prove that it works, but you're not able to get the drug from the company for free to do the drug study, then it's prohibitively expensive, so you're caught in this sort of no man's zone of catch 22."
The only solution he sees, at this point, is public pressure.
"I think the solution is to have sort of a groundswell of support from patients and advocates to try to push some of these pharmaceutical companies to initiate these trials."
In any case, since Dr. Cobbs' research became public, Valcyte has been in high demand among patients desperate for a cure.
"The websites for brain cancer patients have been flooded with people trying to get this drug and I've received calls and emails and it's a difficult position because as a provider, I'm not able to write prescriptions for people I don't know, number one, and number two, I haven't proven that it works effectively and it hasn't been completely established," says Dr. Cobbs.
"You're kind of caught in a difficult position, but there are patients that are getting the drug, even getting it from Canada, and some patients seem to be doing well. But we need to absolutely do a definitive prospective randomized study to prove that it works."
Currently, according to the National Brain Tumor Society, about 95 percent of patients whose tumors were removed and who underwent traditional chemotherapy and radiation treatment saw a tumor return in six to eight months.
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