Thursday, March 17, 2011

Thoughts on the new lupus drug, Benlysta

The lupus community is all abuzz over the release of a new drug designed specifically for lupus patients. Not a cure, by any means, but something that *might* help *some* patients reduce their need for steroids.

I voiced my concerns over this drug on my blog when I first heard about it. It is only effective in 42% of patients, which means it is only helping 7% more patients than a placebo (sugar pill). And considering how many times they can run trials and tweak numbers to achieve that result, it's probably no more effective in reality than a sugar pill, and waaaay the heck more expensive. And Lord knows what side effects it has (including death, if you want to call that a "side effect").

If Benlysta's promise is that it can reduce the need for steroids, well, so can lots of other things that are far less ricky and expensive. Like a gluten free diet, acupuncture, massage, eating lots more leafy greens and fruits, juice fasting, yoga. All those things are relatively inexpensive to do, have no risk, and they work.

Big Pharma saves lives, but it also takes lives.You know what's really weird? Lots of drugs actually cause the thing they treat. Prednisone- given to me to stop kidney failure- over the long term can cause kidney failure! Chemotherapy- given, among other things, to treat cancer- can cause cancer!

Thinking we can be restored to wholeness by just popping pills is the kind of stuff that comes from watching Alice in Wonderland too many times. "This one makes you smaller." "This one makes you happy."

How about "This one has limited effectiveness and costs $35,000 a year?"

Thank you, big pharma, for taking lupus seriously and putting our disease on the map so people will take us seriously. We appreciate the effort. If I get deathly ill again, I'll be taking me some prednisone to save my life. But currently I am well, and I got this way through a series of good choices.  I think I'll be sticking to my plan of actually building wellness via lifestyle and avoiding drugs unless I'm going into kidney failure.

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at