Any News from Whittemore-Peterson Institute?

[TheMoonIsBlue]

Has anyone contacted them lately and received any info. as to when they think their patient clinic will open?

Are they focused solely on XMRV at this point?

I'm sure there are still A LOT of people who have not been tested for XMRV yet, (and probably a lot who can't find doctors even willing to order the test) so I was just wondering if WPI is suggesting that patients get tested for XMRV and perhaps the other tests VIPDx offers (such as RnaseL, cytokine tests, CD4/CD8, Herpes virus panel, I can't remember what else) so they have some info to go on when the patient arrives.

Or just wait until the clinic opens and get all the testing done there? (and I'm only assuming they have other tests they are working on not available yet)

I was just thinking, if they will have other ways of testing for XMRV (and other viruses) at the clinic, such as the Stomach Biopsies I've heard mentioned? If so if that is more reliable than blood testing......I don't know.

And I can only hope doctors in other parts of the country/world will work together with WPI because there are going to be so many people who can't make it it Reno.

Sigh. Any news?

 

[glenp]

here is a link

http://treatingxmrv.blogspot.com/

http://cfspatientadvocate.blogspot.com/2011/01/dr-jamie-deckoff-jones.html

 

[TheMoonIsBlue]

Thanks Glenp that was helpful.

I am worried about the money issue, as I'm sure everyone is.

If it is a matter of medication one will need for life, I'm sure no insurance company, whether private, medicare, medicaide, universal,etc. is going to want to shell out money for expensive brand name drugs without a massive fight. Some are much, much better than others, but some, to be frank, suck, and won't pay for anything off-label or unproven. And then there are the uninsured....

If it is a matter of medications such as ARV's, if one has to stop ARV's due to financial reasons, isn't there a risk of developing resistance to the drug?

Worry, Worry, Worry!

P.S. I didn't see anything in the blog which said when the WPI's clinic would open?

 

[August59]

This paticular blog post here from Dr. Jamie indicates their desire to start seeing patients in May, but the staffing issue could stand in their way.

Just to add another thought on future state of affairs. Watch a medical fields analyst of some degree on television last week. He was commenting on the Abbott Co. laying of 1500 or more employees. What he eventually dug down to was that the FDA is getting even more intense on the new drug applications (Abbott had a couple turned down recently). The FDA was still licking their wounds from the Vioxx, Avandia approvals that came back to bite them.

This analyst went even further to say that he had spoken to someone at the FDA and there was a strong feeling that the FDA is getting really frustrated with the pharmaceutical industry in general because over 80% of the new drug applications are cleaned up versions of older drugs or the combination of two already approved generic drugs (this was one of the Abbott Co. disapprovals). The statement was "We are not going to approve anymore drug applications when the drug applied for is nothing more than a combination of 2 or more already approved drugs (not necessarliy generics)". Caduet, Vytorin and Advicor have already been approved and they nothing more than two available generics combined into one drug. They are also selling for about ten times the price of the two generics combined.

The end question was "Did these actions by the FDA hurt the potential for new innovative drugs from the pharmaceutical industry?" The answer was "No"

 

[Snow Leopard]

Those are just the 'unexpected' consequences of the regulatory environment. If the government provides the possibility of monopolistic rent seeking, then those in the industry will often prefer rent seeking behaviour due to percieved economic incentives. Especially due to the excessive cost of getting drugs approved in the USA.