Friday, July 24, 2009

Why I’m Not Singing The Praises Of Benlysta

I’ve gotten e-mails from multiple e-mail groups, listserves, and organizations about Benlysta. Other lupus bloggers are posting about it. Clearly there is buzz about this new drug, but I’m just not feeling it.

Maybe some of you are thinking, this is just her depression talking. Or this is her sullen personality showing itself once again.

No, actually, this is me being realistic.

Recently, I got a very fancy envelope in the mail from the rheumatology clinic. I wondered what it was, and was a little more than surprised to see staring at me a flyer for a lupus walk.

I wanted to scan the flyer in to share here, but I refuse to advertise. And I don’t appreciate having things rubbed (or thrown) in my face. This whole “direct-to-consumer” marketing has gotten a little out of hand. Don’t tell me what kind of patient I’m supposed to be…

As I’ve read some of the things that doctors are saying about Benlysta, I’m not very encouraged. It sort of reminds me of how, in 1985, right after pituitary-derived growth hormone was taken off the market because people were dying, Genentech was conveniently prepared six months later to unveil a synthetic version (and I’m not sure that has been any better, for other reasons not to be explicated here).

I think doctors, pharmaceutical companies, everyone is feeling the drain that there hasn’t been a new drug explicitly to treat lupus in over 50 years. Is this fortuitous timing? I think so. Could this be the cure? Maybe, but I think not.

I’m particularly skeptical when the company running the study of the drug refuses to release drop-out rates, and there are no negative side-effects/ incidents being reported in the news.

I think drug companies are crafty. They know how to find potential markets and exploit them. Human Genome Sciences stock soaring 277% after the news about the efficacy of drug was released is a case in point ( Honestly, at this moment, I feel like this drug is being promoted as a moneymaking scheme for big-pharma, rather than a humanitarian effort on the part of doctors and scientists to actually help patients with an incurable and often debilitating disease.

Lupus patients have been taking drugs with horrendous side-effects for years (read: methotrexate) because we’ve had no other choice. So really, there’s no great marketing reason to create a drug that’s both safe and affective. It kind of makes me feel like these companies think lupus patients are desperate, they’ll take anything. It’s also curious that nearly everything I’ve read has been the exact same thing; copy and pasted from various press releases. The only newsworthy thing about this is that it’s new.

I also find it more than a little ironic that the LFA has a link on their website, “Send Words of Appreciation to those who helped to develop BENLYSTA™ as a treatment for lupus.” You’ve got to be freaking kidding me. The drug hasn’t even gone through the final stages of trial, FDA approval is years away, we clearly haven’t heard the full negative story about this drug, and yet were getting all warm and fuzzy and shit? We’re trying to feed the medical profession’s ego. Again, I have to wonder if this is meant more to help doctors or patients. And when that answer can’t be easily parsed out, we’re in trouble.

The other thing I have to say that I find humorous is that this drug is being touted as a way to get patients off of steroids. Okay, so we all know the horror that is prednisone. But here they are, promoting this new, injectable, safe or not (we don’t know yet) drug. And the best they can offer is don’t take that, take this instead? It’s a classic fake-out, and right now, I’m not buying it.

I guess I’m also a little biased because since I’ve been feeling pretty good recently, I’m of the mind, “If it ain’t broke, don’t fix it.” And I’m sure I’ll get some hate mail about this post, but I think we need not get too ahead of ourselves here. And I don’t know about you all, but I’m not too keen on the idea of donating my body to science just yet.

Obviously I’m as jazzed as the next person with lupus that we now know that scientists are actively studying this disease. But just as people tell you not to marry the first person you meet, I don’t think we should be committing ourselves to the very first drug, either.


  1. Yes!
    It would be wonderful if this was a break-though, but we have no proof of that yet. And the company that makes it is thrilled because they'd stand to make big money off it. From what I've seen the thing they can say is that for some people it might be better than a placebo. That's not a miraculous cure. That doesn't say much about the risk of taking it being worth it.
    Also have to agree with you about MTX. At least it is cheap. Although the cost in suffering is not cheap.

  2. I'm right there with you, sister! Last year, the Zero in 50 campaign from the LFA came out and - WOW! Look what we suddenly have now?! I also would like to see some longitudinal studies before singing any praises. One thing awareness does is bring out more than just the wolves among us - big bad ones arrive, too.

    Since the Cellcept works for me and has more time behind it, I think I'll stay where I'm at, too. However, I realize not everyone is doing as well as I am. I do sincerely hope that this does work out for those who are still suffering. Just be careful not to put too much hope into it and continue to gather all the information you can before jumping on board. Medicine can often be a sheep in wolf's clothing.

    Thanks for the reality check, Leslie!

  3. I agree with everything you say.

    I think when I first saw the news about the drug, I was mostly just happy to know that there actually was something in the pipeline for treating lupus. It's just been so long, and I find it mindboggling that no new drugs have been developed in so many years to treat a disease that affects more and more people every year.

    But I think people would be foolish to jump on the bandwagon when/if it makes it through FDA approval unless nothing else they're doing is working and there's nothing left to try. It takes years, if not decades, after drugs are approved by the FDA and get into usage before we really know the full implications of what they'll do to a body.

  4. I still appreciate the awareness it is bringing. FINALLY something other than "Michael Jackson might have had Lupus" to bring awareness. If people start investigating a company whose stock has soared overnight and why it is, then someone else is learning about Lupus. I'll take it.

  5. Thank you for being part of the Tour de Grande Rounds.

    The Cockroach Catcher

  6. I really appreciate your open and honest comments on this new drug. I had no idea that the company's stock had soared that much after the announcement....interesting.

    I think you are right to be skeptical and cautious. It is my opinion (albeit, unpopular opinion) that we should approach more drugs with caution (read: new flu vaccines, anthrax vaccines, etc). Let's be sure that whatever we are putting into our bodies is doing more good than harm.

    Great blog. Love the MJ Halloween costume!

  7. One thing people should realize about BenLysta is that it has been in clinical trials for years and there are some of us that have been on it it for 6 or 7 years already w/ no signifigant adverse effects. This is the first treatment EVER specifically tageted for lupus to make it to stage 4 trials successfully. The only things actually approved for lupus currently are aspirin, plaquenil, and prednisone. Chemo drugs such as cellcept are used off label along with anti-rejection drugs such as imuran...none specifically work on lupus but are more "stop gap" treatments for a specific issue such as svere autoimmune attacks on vital organs such as the kidneys or lungs....they are basically intended simply to keep you from rejectiong your own organs by pretty much wiping out your immune system. BenLysta is progress. Don't believe me? Ask the nurses who are the ones administering the infusions and who work most closely with the patients. I have been on this protein based biologic for several years & my only side affect has been feeling a bit tired for about 24 hours after infusion. My nurses have kept me apprised of what's going on each step of the way & have reported the drop out rate at my rheumie's office/research center to be only 3 or 4 patients over 7-8 least 1 due to pregnancy & another due to having a recurrence of a previos cancer BUT it was a cancer which commonly reccurs in patients regardless of any other issues/meds they are on. I have extensively reasearched every detail and option & hope I NEVER have to give up my BenLysta. Also, yes, HGS stock went up drastically BUT I know alot of lupies were bying the stock besed on the hope for a new, safer, more effective treatment. The success rate is MUCH higher were the results measure objectively (i.e., actual reduction in flares and lab ana actually reads negative quite often now when it was through the roof before. I am grateful for BenLysta and while it isn't a cure, it is a start in the right direction and that has to cout for something....Oh, ome last note- HGS is NOT big-pharma but rather a reaserch group....Glaxo is the most likely to be the big-pharma involved When the treatment comes to market....also, injection isn't the right's an IV infusion every 4 weeks. HYH!