Author: Beth

More from KM:

From the New York Times: A Cancer Drug Shows Promise, at a Price That Many Can’t Pay

“Doctors are excited about the prospect of Avastin, a drug already widely used for colon cancer, as a crucial new treatment for breast and lung cancer, too. But doctors are cringing at the price the maker, Genentech, plans to charge for it: about $100,000 a year.”
For the complete story:
http://tinyurl.com/banwj

This is the same scenario for revlimid. Written off label for myloma, it costs three times as much as it does for MDS treatment since the dosage for MM is higher. And it makes the $100,000/year for avastin look like a bargain when Celgene charges $180,000/year for revlimid. This seems to be the trend for cancer drugs-price them so high that few can afford them or insurance can’t or won’t pay for them. In the meantime, people die.
Dave did get his first free revlimid today from the Expanded Access Program. We’ll get it free as long as we can so that we don’t burden our insurance company any more than we have to.

A fellow listmember on the ACOR MM list has been in touch with Celgene quite a bit, to get her husband on the new drug, Revlimid. Those of us in the trials get the drug at no cost to ourselves, but when it’s approved for use with MM, we’ll have to pay (one way or another). I’m going to start an email campaign to let the media know about this. So far, I’ve only written to CNN and had no response. I know. I’m expecting too much.

CELG financial data

From K.M.:
Revlimid is available to MM patients off-label from pharmacies approved
by Celgene. Dave got his from Biologics in NC last month and I think
that the press release was adding another pharmacy to their list (maybe a
total of 3 now.) The problem is that they will charge your insurance (or
you if your insurance won’t pay) $15,000/month for the drug. This is
because each pill costs about $250 and they only have 5 mg and 10 mg
pills available commercially. (One Celgene manager told me that they
will have 25mg pills available when revlimid is approved for MM since
that is the standard MM dosage, so it will “only” be $250/day instead of
$750/day.) You may still be able to get the drug for free from the
Expanded Access Program which puts you in a clinical trial. Dave starts
on the EAP this week after having our insurance pay $15,000 for revlimid
last month. We, or our insurance co., won’t be paying anything for the
drug, but he has to adhere to the protocol of the trial.

I see Brrreeeport is still going strong.

So far, the Rev/dex combo is working for me. It’s not without its problems though. My neuropathy has progressed considerably for the short time I’ve been on Revlimid. I started on January 11th, I think. It’s just a little over a month later, and my feet are more numb. I feel a little clumsy when I walk. My hands, which were only affected a small amount by thalidomide, are now burning. I have that same burning feeling on my face, around my nose and mouth. I will report these problems at my next appointment on the 22nd. If it seems to get worse in the meantime, I’ll call and tell someone.

I think most of the other problems I’m experiencing are due to the dexamethasone. I feel weak, shaky and tired. I developed the cushingoid symptoms with great speed. When you read about dex side effects, the ones that are supposed to be due to long term use seem to be standard for me. I get the classics: moon face, buffalo hump, turkey neck. You know what I’m talking about! I feel like a monster, and I bet I could scare little kids.

brrreeeport is the word of the day.