Off label or Compassionate Care Drugs?

[Ellen]

Hello,

It seems that I'm at the end of the line for standard chemo treatments--recent scans showed slight growth in liver and lung mets on the folfiri/avastin regime. (I could/may try folfox again after being off 1.5 years but still have neuropathy and am reluctant to make it worse). So I've been researching clinical trials and various drugs.

I'm wondering if anyone has had any success getting insurance companies to pay for any drugs prescribed off-label or getting drug companies to provide drugs for compassionate care. If so, how does this work??? I'm also looking at several clinical trials, but there is no promising local clinical trial, and traveling every week or 2 for treatment when I have 2 tiny kids is very daunting.

Thanks for any advice!

Ellen

[Guest1]

A couple of years ago the maker of soon-to-be-released DAVANAT received a compassionate use investigational new drug application from the FDA:

http://www.businesswire.com/portal/site ... ewsLang=en

Here is more information from the ACS:

http://www.cancer.org/docroot/ETO/conte ... ug_Use.asp

"Patients who are not eligible for either clinical trials or an expanded access program (if one exists) may be able to get the unapproved new drug by applying for single patient access. In this case, the patient's doctor must first request permission for access to the drug from the drug company. If the company agrees, the patient's doctor works with the drug company to ask the FDA to approve the drug for use by this one patient. The length of time it takes to get single patient access varies. But if it is an emergency, the FDA can complete the paperwork in 24 hours."

[Lifes2short]

Ellen, best of luck to you. I know I"ll eventually be in the same situation. I want to talk to my doctor about Davanat. Thanks to our "guest" for posting those helpful links.

Ellen, please keep us posted on what you find out and whether you can qualify for compassionate us. If possible, PM me so I"m sure to see it.

Thanks for bringing up this important topic.

[Guest1]

Ellen, best of luck to you. I know I"ll eventually be in the same situation. I want to talk to my doctor about Davanat. Thanks to our "guest" for posting those helpful links.

Ellen, please keep us posted on what you find out and whether you can qualify for compassionate us. If possible, PM me so I"m sure to see it.

Thanks for bringing up this important topic.

Glad to be of service. As for my Guest1 name, it was the first thing that popped into my head. I'd change it, but I don't know how.

I suggested compassionate use to my father's oncologist, but he seemed to dismiss the idea at the present time. His preference is to stick with approved drugs until there is absolutely no chance that they'll work. I prefer to plan a bit more, so that my father has experimental drugs available to him when he needs them, since by then it may be too late to qualify for a clinical trial.

[Ellen]

Thank you both for your responses! The websites are really helpful. And I'll definitely keep you posted.

I met with my onc today and our first attempt will be to try to get me into 1 of 2 clinical trials we've identified. If that doesn't work I may try to get one of the other drugs through these avenues. I'll let you know.