Pharmaceutical Company Events and Chronically Ill People: Dos and Don’ts

I have had the opportunity to attend a lot of events as a result of my blog.  Many of these events are hosted by pharmaceutical companies.  Even the most “patient friendly” or “patient focused” events aren’t perfect.

I’ve had several experiences over the past year that have left something to be desired.   

Last summer, I was attending an event in Miami.  The turnaround time was 36-hours.  I knew this was crazy.  But the reason I didn’t fight it was because the one other time I asked if I could extend an offer an additional night due to the quick turnaround time, I was very firmly rebuked – only to find out later that other attendees had asked for the very same thing, and got it.

Back to Miami.  The hotel was absolutely massive.  So when it came time to meet the car to take me to the airport, I couldn’t find it anywhere.  I was so frazzled.  A chronic friend of mine who was also attending, got on the phone.  It took us almost 45 minutes to find the car.  Finally found the car.  Got to the airport.  The gate was changed four times, necessitating me having to run through the airport, and the flight was ultimately cancelled.  I spent six hours waiting in line, only to have to get out of line when I was five people from the front to make sure I caught the flight I booked on another airline while I was standing in line. 

All in all, the event was a disaster.  When all was said and done, I was up for almost 60 hours straight.  I had to take a day off of work to recuperate.  This experience still gives me nightmares.    

I understand that event planning is difficult.  And I’m sure that this is even more complicated when you are working with chronically ill people.  I also know that some of this was out of the control of the event planners, but some of it was not.     

Do

1.       Include chronically ill people in the planning of the event.

Nothing about us, without us, right?  We know best what we need, so why not include us in the planning?  Why Miami at the end of June?  That heat and humidity really isn’t conducive to having RA and being a functioning human.  But they didn’t ask, so how would the event organizers have known that?  This might not hold for events that cater to multiple illnesses, but for events that are focused on one illness group, I think this is imperative.

2.      Provide a welcome or swag bag that includes snacks, but don’t provide too much stuff that attendees will then have to figure out how to get it all home.

I love getting swag at conferences.  Especially snacks that I can take on the plane with me when I leave.  But a huge pet peeve is being given so much stuff that I don’t have room to pack it.  I’ve learned to travel light, especially when attending events that have a quick turnaround time, so I usually have very limited space available for giveaways and the like.

3.      Include breaks, and let attendees know that it is okay to remove themselves to take breaks if they need it, in addition to assigned break times.

You might not think you have to tell patients this, but I always feel relieved when this is said out loud. 

4.      Have the event and accommodations in the same location.

This makes it much easier for attendees so that they can go back to their room and rest if they need to.  If you can’t hold the event and accommodations in the same location, provide a “wellness room” or other place that attendees can go to relax, refresh, and even nap.

Don’t:

1.      Make the turn-around time too short, and make travel arrangements that make sense for the attendee.

It’s not as easy for chronically ill people to bounce back, so it’s unrealistic to expect someone to spend such a short amount of time in one place, and so much time traveling.  When most chronically ill people ask this, it isn’t because they’re trying to take advantage.  Additionally, while assigning someone to the earliest flight out and latest flight back might seem like doing someone a favor, this is not convenient for many chronically ill people.     

2.      Have the event at a venue that requires a lot of walking.

You don’t want to tire people out just from them walking from their room to the part of the hotel where the event is being held. 

3.      Assume that when the event is over, your commitment to the attendees is over, too.

While not everything that happened was the fault of the pharmaceutical company, you can’t just fly someone out to a strange city, hold an event, and then say goodbye, never to be seen or heard from again.

4.      Treat people differently. 

You can’t say that one person can stay an extra night and then tell someone else they can’t.  Obviously, I’m not referring to people that have specific dietary needs and other things like that.  But if one person asks to stay an extra night because it’s difficult for them to travel, and someone else asks the same, you can’t say “yes” to one and “no” to the other.  Plus, we know each other and we talk, so there’s that. 

With everything that happened after the event was technically over, such as not being able to find the car and having my flight canceled, I shouldn’t have been on my own at that point.  There should have been someone I could have contacted who could have helped me.  It didn’t help that by the time my flight was canceled, it was after 11 p.m.  But still…

Ultimately, I did get reimbursed for the flight I purchased, and the company got reimbursed for the flight I didn’t take, because I made sure they did. 

I left feeling like I might never attend an event run by this particular pharmaceutical company again.  And that makes me sad.  But I can’t miss work to attend an event, only to miss more work because things went so poorly that I need to recover from it.  It wasn’t an oh wow, my mind was so blown that I need time to process kind of recovery.  It was more of an I’m so stressed and my brain and body are so fried that I need rest kind of recovery. 

I never want to seem high maintenance, but if high maintenance means looking out for myself and caring for myself, then I guess that’s how it is going to be.

And I also don’t want to be seen as ungrateful, because I am so honored and grateful for all of the opportunities I have been given.  But, and this is a big but, events that go the way this one did suggest that this company doesn’t know how to work with chronically ill people, or hasn’t sought input from chronically ill people about how an event that includes them should be run.

I’ve also had a few more recent experiences that have left something to be desired.

1.       In one instance, I had one screening call for a pharma advisory board.  Then there was a second call, which because of the time options, I had to take in my car during my lunch hour.  I didn’t make a big deal about that since it was a relatively short call.  A third call was scheduled, but all time options during the day, and for a significant chunk of time.  Even though they are paying for this third call, like I said, it’s during my workday.  I emailed the organizers to point out that all of the options were during the workday.  So what am I to take this to mean?  Because I’m chronically ill, I shouldn’t work?  Or that opportunities that come around here and there should take precedence to my full-time day job that is consistent?  I have struggled with having to say no to things, but this circumstance is really forcing my hand.  The big problem is that I have to take unpaid time for this – even though the call is paid – because I have no paid time off left because I’ve exhausted it going to doctors’ appointments. 

2.      In another instance, I was asked to be part of another group.  I jumped at the chance.  I didn’t hear anything finalized, so the week the event was supposed to take place, I reached out to find out if it was happening, and was told that it wasn’t.  I was then asked which of two dates would work for me.  At the time, I said they both did.  Again, several weeks went by and I didn’t hear anything.  Because I’ve been dealing with some health issues, I ended up having to schedule an appointment for one of the dates, so I emailed letting them know that I would only be available the one date.  I then received an email that they had finally decided on a date, and it wasn’t the one that I could attend.  So thanks for playing.  While I don’t expect events to be rescheduled because of me, I don’t appreciate the lack of care for my schedule.  No one reached out to say the originally scheduled call wouldn’t be happening until I asked. 

Does any of this sound patient-friendly or patient-centered?  Not to me.  Being patient-centered means more than bringing patients to the table once a year.  It means more than throwing money at patients, but treating them like crap.  It means really understanding what patients go through and experience, and the struggles that we face. 

Call it FOMO (fear of missing out), but I have to call out a bad opportunity when I see one.

And here’s a really, really important tip:

Don’t treat people who are going to blog about you like crap.

I’m not going to lie.  I hold organizations and companies that work with patients to higher standards of how they treat patients.  And unfortunately, a lot of times, they fall short of the mark. 

I had originally written this post for another site that I blogged for, but they didn’t post it because they didn’t want to damage their relationships (read money) with big pharma.  And then they told me I couldn’t write for them anymore.

Mike drop.

Leslie out.   

(So I’ve really struggled about whether to add to this post and share it, but because there continues to be a glaring lack of “getting it” that I just can’t handle anymore, I felt like it needed to be said.  I hope that people will read this and take it turn out.  Patients want to help.  I want to help.  But I can’t help at the expense of myself.  So please, let myself and other patients be part of the solution.  Let us help pharma.  Helping pharma starts with including patients in a meaningful way.)

On Building Playgrounds And Baking 1,000 Cupcakes

I recently saw an Orencia commercial (see end of post to watch commercial) that stopped me in my tracks because it is so different from other RA medication commercials. 

The commercial portrays a woman doing everyday things, like turning a doorknob and walking up stairs. 

And I have to wonder.  Is pharma starting to listen to us?

I can’t tell you how many times I’ve sat in meetings with pharma and the continual  trope from me and other patients is that the commercials don’t represent us and portray the disease in a way that makes the general public not understand the significance of the disease. 

One thing I don’t know is whether the people featured in the commercial actually have RA.  Many pharma companies say they cannot use real patients.  However, Gilenya, a drug that treats multiple sclerosis has done just that and features real patients who are on the medication, including my Stanford Medicine X friend Jamia.

This is definitely a step in the right direction.  This is the sea change that we need.  And it proves that if we raise our voices loud enough and we complain often enough, and we speak as a collective voice, we can get things done.  Change is possible. 

And maybe this seems like a really basic or obvious change.  But I think on the part of pharma, they don’t see it that way.  They have fundamentally changed how they talk about RA and what their medications are realistically able to do.

The commercials out there that show patients building playgrounds also create unrealistic expectations on the part of patients.  And this perpetuates the discourse that patients fail medications, when it reality, medications fail patients.  By showing situations that the majority of patients won’t be able to do on a good day not only makes patients expect that, that is how the medication will work for them, but that when they don’t experience it, that they have failed in some way because it should work for them the way the commercial shows.

I won’t call out here the specific medication whose commercials seemed to offend more than others, because you probably know which one I am talking about.  But I’ve always resented them.  I always wanted to throw my TV out the window when the commercials came on and someone was building a playground or baking 1,000 cupcakes, things that I probably wouldn’t have done pre-RA.  The commercials always left a bad taste in my mouth and felt like false advertising. 

Maybe there’s some bitterness that the medication didn’t work for me and my experience with it was pretty dismal.  But I wasn’t the only one.  And that has bothered me a lot, too.  When patients are traumatized by painful auto injectors, and patients have trouble accessing pre-filled syringes, which still burn, but not as bad as the auto injector, someone should be listening to that, and finding a way to change it.

So maybe this goes beyond commercials.  It speaks to patients having a voice when it comes to the medications that are on the market to treat us, and even medications before they even come to market.  It speaks to patient centricity, and what that means and doesn’t.  Patient centricity means involving patients from go.  It means bringing them into the conversation and keeping them around long enough to make it matter.  It doesn’t mean bringing just a few patients into the fold.  It means actually hiring patients to work for pharma. 

Just because you can’t build a playground or bake 1,000 cupcakes, doesn’t mean that you don’t have a voice.  Every patient matters, regardless of illness severity, and whether medications work for you or not.  Sometimes opening a jar or a door, of climbing a few stairs, is the best we can do.  If medications promise more than that, then that is what they should deliver.  We all have to be realistic.  Granted, climbing stairs and opening jars isn’t sexy, but that’s the reality for so many of us with RA.  

Adventures In Boston And At The American College Of Rheumatology (ACR) Conference 2014*

My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference.  But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.

I arrived in Boston on Friday night.  I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers.  It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.

On Saturday, most of what we did was share our patient stories.  While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting.  I was so lucky to be in the company of so many amazing, amazing people.  We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA. 

It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA. 

Sunday, was more business than personal.  We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen.  We also had the opportunity on Sunday to go to ACR.    

I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited.  Call me a dork, but I have been wanting to attend since I first got sick.

I had high hopes for what would be in store.

I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about. 

I really only made it through the area where the pharmaceutical companies are set up.  To say that they each have their own booth is an understatement.  They have these visually and technologically advanced spaces that can only be described as show pieces.  Most booths had plush carpet and elaborate little cafes and sitting areas inside. 

But that’s where the glitz and glamour ended.

I happened to wear my “I Am The Face of Arthritis” T-shirt.  I love this shirt and would wear it all the time if I could. 

But within  two minutes of entering the convention center, I felt like something was up.  I was being stared at and given dirty looks.  I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add. 

I may have RA, but I am not blind.  Hello all you people, I see you staring at me. 

I was very taken aback by this response.  Why are you in rheumatology if you can’t handle the realities of this disease?  Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case.  Because otherwise, I really don’t understand. 

And unfortunately, the odd behavior didn’t stop at dirty looks. 

The minute we mentioned we were patients and bloggers, people didn’t know what to do.  One woman turned around and walked away without saying a word.  Some people wanted to know what a blogger was.  Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world. 

I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no.  But, it doesn’t mean that they have to be rude and ignore us.  You can welcome us to ACR. 

I’m sorry people, but let’s be real.  Us patients help you pay your bills and keep your families fed.  You might want to be nice to us.

First and foremost, ACR is an academic conference.  That was made abundantly clear.   But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change. 

To be fair, one booth was very friendly to us.

Here are a few selective live tweets from ACR:

And the members of Janssen Biotech who were present and  hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing.  They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston. 

In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was. 

I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations. 

I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.

And of course, illness didn’t stop there.  I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow.  Really?  Do you see what my shirt says?  Learn to read and then tell me I move to slow.  When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof.  And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything.  Come on government employees, pick a side.  I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.   

Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman. 

Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers.  Old friendships were strengthened and new friendships were forged.  And I’m still standing, despite the dirty looks and slow comments. 

I know what you're thinking.  Way to keep it classy, Leslie.  But I am keeping it real.  This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.  

* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR,  however, the views and opinions expressed here are my own.  

Reflections On The 1st Rheumatoid Arthritis Blogger Summit*

Last week, I had the privilege of attending the 1^st Rheumatoid Arthritis Blogger Summit held by Pfizer in New York. 

When I got the invite, I was super excited and surprised to be included.  It was really an honor!  And I’m not going to lie, being treated like a queen for a day was nice, too!    

I was a bit worried about a hidden agenda, but the day opened by us being told that Pfizer was not going to discuss any of their medications.  Honestly, this impressed me.  And it put me at ease that I wouldn’t feel like I had to write about a product that I haven’t been on, because in general, I usually don’t really discuss medications that I, myself, haven’t been on, unless there is news that I feel is really important for my readers.

We did learn, however, about an unbranded campaign that Pfizer is rolling out, Rethink RA.  Unbranded means that the campaign is not connected specifically to any drugs produced by Pfizer.  In other words, this program is designed to show Pfizer’s commitment to the RA community, in general, and not just patients that are on their medications.    

You can check out the website, http://www.rethinkra.com/.  And the (free) kit that you can order has a lot of handy tools in it for helping you start or continue a conversation with your rheumatologist.  Hopefully this campaign will continue to evolve!  

Rethink RA Kit

 I think it is hugely important for there to be an open line of communication between patients and pharmaceutical companies.  I think a lot of times it can seem like the pharmaceutical companies are untouchable, and there are also a lot of people that tend to stand between the patient and pharmaceutical companies.  It was nice to be able to share my opinions and experiences as an RA patient directly, and I hope that Pfizer was receptive to that.

We ate lunch at Haven’s Kitchen, with a meal prepared by Seamus Mullen.  Seamus is a chef – owner of Tertulia restaurant in New York and author of the cookbook, “Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better” – and he has RA.  He taught us some of his tricks in the kitchen that he uses to make cooking more RA-friendly, and made us a delicious meal of cucumber gazpacho, raw kale salad, curried chicken (tofu for me) and ginger rice, and almond cake.  Seamus is going to serve as the spokesperson for the Rethink RA campaign.  The meal was delicious, although it put us all into a bit of a food coma for our afternoon sessions with Pfizer. 

Fellow attendees were Britt Johnson (The Hurt Blogger), Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Marianna Paulson (A Rheumful of Tips), Shannon Ragland (representing the Rheumatoid Patient Foundation), Dana Symons (at the Water’s Edge), and also included two of my fellow HealthCentral RA bloggers, Lisa Emrich (Brass and Ivory: Life with MS & RA) and Cathy Kramer (The Life and Adventures of Cateepoo).

Our program for the day

I have to say, it was comforting to be around others who were totally stiff, standing up at the end of lunch and were also battling RA and the humidity.  By the end of the day, my lupus was having a field day with all the fluorescent lighting.  I had a headache and went back to the hotel to lie down, but was able to rally for dinner with a few of the bloggers.  They checked out Time Square afterwards – I went back to my room to prepare for my 9 a.m. flight - since I’m moving to New York in a few months, anyway.

The highlight of the day was getting to spend time with my fellow bloggers, because it is so rare to be in the company of people who get it.  That was really awesome!  It was nice to share our stories and not have to provide cliffs notes about everything.  I’m grateful for the connections I made with the other bloggers.  So thanks to Pfizer for bringing us together. 

I hate to admit that I am still recovering, but flying to New York on Thursday night, having the summit and then hanging out with the other bloggers all day Friday, and flying back to Michigan Saturday morning was a bit much for me, but totally worth it!  

In some ways, this experience made me realize the intricacies of this disease.  The need for rest, healthy food, exercise, and sticking to your medication regimen.  It also made me realize that communication needs to occur on various fronts – with you and your doctor, with you and your friends and family, with you and your community of support, and with you and others involved in the illness experience, such as the pharmaceutical companies.  This experience also helped to underscore the complicated nature of the healthcare system, and what pharmaceutical companies can and cannot do.

I hope to be included in more things like this in the future!  What a great opportunity, interacting with a pharmaceutical company, and getting to meet other RA bloggers!

*In the effort of full disclosure, my travel and lodging were paid for by Pfizer/TwistMedia.  However, it was my choice to write about the experience.

Benlysta: Here We Go (Again)

Last July, I wrote a post airing my skepticism about the new drug, Benlysta. And several of my readers agreed with me.

Given, the news about the drug over the past several days, I find myself writing about it again, and singing a similar refrain.

I would love to be hopeful. I would love to be jumping up and down right now, and bouncing off the walls. But I’m not. After surviving my second lupus-related hospitalization in a little over a year, I am seriously questioning the efficacy of any and all medications at the moment.

I read a very interesting New York Times article that is at best equivocal about the benefits and risks of Benlysta.

Another interesting thing is that the stock of Human Genome Sciences, Inc., the maker of Benlysta, dropped yesterday after the FDA hearing, due to concerns expressed about the safety and efficacy of the drug. And Benlysta would be the first drug ever to make it to market for the company.

According to a Business Week article : “While the Food and Drug Administration advisers recommended approval of Benlysta yesterday, they raised enough concerns about safety that U.S. sales may be limited […].” Further, the article states that it“works well enough to outweigh risks of suicide, infection and cancer.”

I’m inclined to say, that’s all? That’s all we get? That likely wouldn’t have kept me out of the hospital. It wouldn’t keep me from having a throng of doctors. And would it minimize my medication regimen? Maybe. Maybe not.

What I really want is a cure. I don’t want to be sick anymore. I don’t want my number one job to be that of a patient. What I really want to be and feel is normal. I don’t want a powerful drug to create a veil of normalcy. I simply want to be. No matter how good this new drug is, it isn’t going to work for everyone. There will be side effects, which could potentially be worse than the disease, itself.

Overall, I feel like a lot of the story is missing. And I don’t think we yet have all the facts to make an educated decision about whether or not to utilize this drug if given the opportunity.

Medication decisions are extremely personal, and of course, need to take place in concert with medical professionals. But I do caution readers to remember that there are many players involved in this approval process, and I have to wonder if the patient is really first on the priority list when deciding the fate of this orphan drug.

I feel like I’m becoming a so-called lupus drug frequent flyer. I’ve been on plaquenil and prednisone since I first got sick. I was on CellCept (off-label), but it had limited efficacy. I’m on Methotrexate now, but I am questioning it, too. It seems like my body gets comfortable with drugs and they just kind of stop working. So would the same thing happen with Benlysta?

Again, I don’t want to get ahead of myself here. Right now, what I want the most is my pre-illness life back, and I fear that’s something that no drug will ever be able to give me.

So how do you feel about this latest news? Does it fill you with hope, fear, a combination of both?

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 (washingtonpost.com). 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.