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I am not surprised there are so few from the patient point of view presenting at this confab. Nor am I surprised that it appears as if the opportunity to speak was brief. Pharma does NOT want to hear what John Q and Jane Z have to say.
Personally, there should be NO advertising of drugs on the TV, radio, magazines, newspapers, or online. The only time a drug should be mentioned in the media is when warnings / cautions need to be broadcast.
If it were not for the trillions being spent advertising these drugs (Ask your doctor is XXX is right for you), the drug companies would not have to charge exhorbitant prices for their products.
However, I do not see the situation improving any time soon. As long as big $$$ keep flowing to those who make the rules, the rules will continue to favor Pharma. Plain old citizens have no one in government willing to listen to our opinions or pleas. Those groups who can provide the big bucks are always going to have their way.,
Like Diane, I feel that strict regulations are needed. Sadly, I forsee only a worsening of the present situation.
Thanks Connie,
I too get frustrated with being bombarded by advertising, except for the rare occasion when I think to myself "now that looks interesting" regarding a new-to-me product or use of product. However, it seems completely different when it comes to health and medicine. I would like to know the benefits, method of action, risks, results during strict clinical trials and those in the real world, and how exactly this med might help me personally. However, as Diane points out, with MS there are no concrete answers (and anybody who says that there are is lying).
Perhaps I would prefer to see less of a marketing message. Now look at what is being presented on the canadian website MSWatch (brought to us by TEVA).
Complementary and Alternative Therapies
Now THIS is a useful website for information, presented in a balanced manner. It gives the big picture and doesn't obviously push TEVA's therapy over the others. I'd say that we need much more objectiveness here in the US regarding the information which pharma provides.
My calculation is based on 55 unique speakers of which the following 5 seem to represent consumers:
Center for Medicine in the Public Interest
Consumers Union
National Research Center for Women and Families
PEW Prescription Project
Individual Consumer
Hence, 9%.
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Thank you John! I had a difficult time pinpointing the presenters who might represent the patient's (customer's) point of view. I did however notice that only one individual was speaking simply as an individual.
Like you mention before, it is very likely that draft guidelines has already been written. Hopefully we can get more individuals to speak up regarding what they DO want to see in addition to the many who might speak to what they DO NOT want to see within the social communities online.
I'm at work so I don't have time to fully digest or formulate a full size post. Keep in mind this is coming from a Pro Business kinda guy---I don't think Pharma should speak, advertise or anything else directly to the public. It's just wrong, if nothing else it puts people in harms way and gets them to ask for meds they don't need. Go get em Lisa
Hi Todd,
Thanks for stopping by. I really like how you use your business talents to raise both awareness and money for MS support and research. I hope that the NMSS recognizes the contributions you make in both areas, especially in the promotion of artists living with MS. In fact, I am part of an Advisory Committee for NMSS regarding online community outreach. We met for the first time on Sep 30 and I mentioned your T-shirt campaign. I'm not so sure that anybody else in the room had been aware, but now they are. I also made them aware that Courtney Carver has chosen to raise and donate $1,000,000 to the Myelin Repair Foundation for research. Arts folks are so talented and big thinkers.
Regarding pharma. I'd much rather that they were open to 2-way conversation rather than simply pushing a single message or agenda. The question of "how can we make a positive difference in the lives of patients who live with MS? ....no matter if they choose our product or not" is one which I'd like to see addressed.
Thanks for the words of encouragement. I wish that I had an opportunity to speak, but this is out of my hands. However, I have now been invited to the event hosted by HealthCentral following the first day of hearings. This will be my opportunity to informally represent the consumer/patient side of the discussion. Too often we (as patients) are spoken about but not as much spoken with.... however, the tides are turning!!
This strikes me as being a very weighted subject, and really just brings up a lot of questions for me.
My opinion of pharma companies in practice is pretty low. Ordinarily the optimist, I have to admit that in general I view the drug companies as being closer to that of a leech than an organization who's inspiration is to help. The science and any real research going on in the backend, has its use, and for some things, I think its viable and important, but that is not the part of the drug companies that we deal with, and that is not the part of the drug companies that this event is highlighting or discussing.
In the back room somewhere, I can believe that there may be an absolute possibility that there indeed is a select few people who are there because they are interested in helping. I don't in my heart believe that there are that many of them, and definitely not ones in the positions that would be working in "marketing" whose core purpose... well.. is making money is really the end goal. I may be considered "sick" and I may "need help", but I'm not positive that they can do anything at all for me, except of course offer pretty words and the idea that if I don't buy into what they are presenting, that I'm dooming myself to have no other option but to get irrevocably worse, but if I pay them huge sums, that it "might" not be so bad.
It has always frustrated me in that... How can they possibly think they are on the path of finding the cure when there is no identified root. The cause of MS still a mystery. I have to agree with Diane's comment in that respect. Still a newbie to this disease, nearing my two year anniversary at being diagnosed. In that time the only constant piece of information I've found is that MS is fluid and ever-changing. I've actually found some odd sort of peace in knowing that even if I'm miserable today, it in all truth doesn't mean I'll be miserable tomorrow, nor that it means I'm necessarily "getting worse". I really hate the negativity I'm spewing, but I am uncertain as to what benefit it is for them to come up with a cure? A cure would insinuate that that my "issues" would be all fixed, and therefore at some point, if it was a true cure, I would no longer need their services.
All that said, I really believe that the most complete information on these drugs should definitely be readily available in some format for people (like myself) who doesn't necessarily see eye to eye with their neurologists. To give us the option to try and make some informed decisions about our own care. Should it be the Drug companies providing this information? - I really don't think so, and of all departments to do so.., definitely not "PR" or "Marketing". No, if they really want to have a progressive event, lets talk to the brains in the backroom, and have them offer information on real study's that weren't paid for in part by their own companies.
Then there is also the issue of people who do not look into their care, who just want something that will "make them feel better", they are going to be prime for the picking by these companies campaigns. There are people, who will just "doctor hop" until they find one that prescribes what they've been told they "need".
Thats all I can offer at the time being.
When the party is over, and everyone's gone home, I think they are still just looking for another way to make even more money off of people.
Serina,
I know you and I KNOW that you are an extraordinarily positive person. I thank you for sharing your initial thoughts on the subject in such a deep way.
"MS is fluid and ever-changing. I've actually found some odd sort of peace in knowing that even if I'm miserable today, it in all truth doesn't mean I'll be miserable tomorrow, nor that it means I'm necessarily "getting worse".
Beautifully said!
"All that said, I really believe that the most complete information on these drugs should definitely be readily available in some format for people (like myself) who doesn't necessarily see eye to eye with their neurologists. To give us the option to try and make some informed decisions about our own care. Should it be the Drug companies providing this information? - I really don't think so..."
Who should be providing this information to us? Do we rely solely on NMSS, MSAA, or MSF? Do we rely on the anecdotal evidence of other patients? and where did they get their original information and education?
These are issues that I think about often.
"...if they really want to have a progressive event, lets talk to the brains in the backroom, and have them offer information on real study's that weren't paid for in part by their own companies."
If I were designing an event for patients (which this hearing certainly is not), I would want to have the scientists present. In fact, I met an NIH scientist at my physical therapist's office this past spring. He had recently had a relapse and needed to work on his balance. Coincidentally, he specializes in myelin and is one of the folks who work with mice a lot and was diagnosed with MS just last year. He can look at the science and research with a different eye than the typical patient. I would want to talk to people like him.
It's interesting a pharma friend of mine pointed out that the studies we reference often were not intended to be used as marketing or educational, they are simply designed so as to show some level of safety and efficacy with the goal of FDA approval. It is a shame that marketing often takes these short-term results (I think 2 years is short-term) to compare products with the intent of enticing patients to go with their companies drug or formula. Must be a bit frustrating for them too, especially since MS is still unsolved.
Thanks Lisa.. :)
I would definitely be interested in what the NIH scientist you spoke about would have to say.. He would be one that would have a vested interest in finding a cure. Opposite of a good business plan I know, but I think sometimes the best thing that the pharma companies could do, is minimize their marketing presence. Just like you said, Patients are already going through all the emotional part on their own. It would be nice to just hear facts, because really when they mix the two in their presentations, for me it makes me that much more untrusting of what they're saying. Of course I have the same problem with watching the News.. :P
I'm not sure who should be the one to rely on as a source for good information.. I conceed that some information would have to be from the companies making the drugs, but my inclination is that it should really be group who did not have any "partnership" with nor any benefits from slanting the information in any way shape or form. Cold hard facts would be preferrable.. but I'm not sure any such organization can totally fill that spot. I appreciate the information that some of the major organizations have out there, I really do, as I would have had hardly anything to go on when I was first diagnosed. But, in the back of my mind I always wonder a little what influences are going on behind the scenes. (Possibly this is more of a personal trust issue on my part... )
Cold hard facts...and trust. Both important aspects of communication and information delivery. The questioning of "partnerships" and influence is an important one.
It doesn't take much reading in the MS blogging community to realize that there is significant suspicion that NMSS is too much tied to pharma money and motives. I was invited to be part of an Advisory group for NMSS and we met for the first time in September. After our meeting I asked one of the high-up NMSS officers how much of the financial support and fundraising which NMSS receives each year comes from Big Pharma. The answer was "very little." I didn't push for specifics at the time, but did encourage her to say so. Publicize how much money flows to them from pharma, how much a percentage of the total does that represent, what is it used for, etc.
Cold hard facts. These can be found in the published study reports. However in the scheme of things, only a fraction of studies are published in peer-reviewed journals (especially studies with negative results are unpublished). Then there is the problem of access to the entire report (not just the abstract). I am hesitant to pay $15-30 to gain access to an article which may be only 3 pages long.
Greater access to information would be helpful.
Re: the NIH researcher. I've got his phone number somewhere around here. I should see if he'd like to share his viewpoints and knowledge on a few things. I do happen to know that he uses Tysabri.
Lisa,
I completely agree with you. I personally don't pay attention to the pharmaceutical advertisments (I think they provide great bathroom break time). However, a lot of people do or the pharmaceutical wouldn't spend the money to advertise as heavily as they do. (Seriously, seems that every other commercial is advertising for either bladder control or erectile dysfunction medication). I don't have a problem with them advertising per se, as long as the ads are HONEST. What I do have a problem with is the pharmaceutical companies contacting patients or prospective users of their medications. I don't feel that pharmaceutical companies should be allowed to to direct mailings either. I would be very concerned about HIPPA violations in how the insurance company obtained patient information.
I feel the pharmaceutical companies SHOULD be strongly regulated because of the potentially devastating effects their products have.
Pity there won't be more patient representitives with you. I know you'll be honest and up front with them!
Bathroom breaks...absolutely!! I like that you point out HONESTY. I'd like to add clarity and transparency to that. As a patient, I really don't need the emotional element which is often part of advertising.
But I do like know all the issues and opinions. I just told a new friend on Facebook yesterday (she has RA, may be getting an MS diagnosis soon, and had not been able to fill her prescription for methotrexate because the pharmacy was out) that if I had to choose only two drugs to take, I would have to choose gabapentin and methotrexate. They seem to benefit me the most. Both drugs are cheap and generic....and they are off-label. Could pharma talk to me about them? NO. But how do they work in MS? We as patients may not know specifically, but can only infer from other studies or sources. This is one area I think that there can be improvement on the information which is available.
Just like I thanked Todd above, I thank you as well for the encouraging words. I'm not attending the hearings themselves, but will watch on the live-stream. I will, however, go to the cocktail meeting (where I'll surely meet some Twitter acquaintances) and represent the patient side of the matter.
I am personally not a fan of big pharma marketing directly to consumers. They are in the business of making money -- big money -- and it is not to their benefit to provide consumers with all relevant information, but to make us believe in their product based on their claims.
Seems to me that all the direct-to-consumer advertising is adding a lot of noise to the conversations that should be taking place between physicians and patients.
Reputable medical sites and online pharma sites are wonderful resources as part of our overall understanding of what our doctors prescribe. We simply cannot allow ourselves to be used by direct-to-consumer marketing.
Advertisers would probably say that repeating ads on internet sites/TV/magazines will do their work, but I manage to ignore them for the most part.
I'd prefer that pharma show me how much it cares by putting those advertising dollars into research and into making drugs more affordable... dare to dream.
Hi Ann!!
I agree with everything you've just said. Each time I hear an Enbrel commercial, it reminds me just how expensive the drug is even if it is not one I am eligible to use (because of having MS). And sometimes the ads give the impression that living with a specific condition or disease is not all that bad....if only you use their product.
I really enjoy having access to reliable health sites and pharma webpages. There are some doing an awesome job at bringing information to patients/consumers in an understandable and clear manner.
The suggestions to divert those same funds into research (and not marketing research, lol) and enhance financial assistance programs, or lower the costs directly, are ones which sound really good to me. But how to we let pharma know what we might prefer?
It's a loaded subject. I have to say I agree with everything Dianne S. said.
It occurs to me that regardless of the glorified media advertisments , when I make a purchase of anything from a washer and dryer to an automobile I check consumer reports. I don't make a purchase based on pretty models in shiny ads.
When it comes to medications I found that I can't even get reliable information from my doctors, because all they know about it is what the drug rep told them over a catered luncheon.
The other point I'd like to make is that the MS medications (including the new monoclonal antibodies) were presented to me in a way that was fear based. Basically I was told that we don't know if it's doing anything for you, but you don't want to be in a wheelchair 5 years from now wishing you had taken it. Now...shell out thousands of dollars please and be happy we have treatments available that weren't on the market years ago.
Hi Bubbie!
I remember many years ago when shopping for almost any item of significance required a "let's check Consumer Reports" from my Mom. Her response usually encouraged a groan from me because this meant we actually had to traipse up to the local library to do the research and we would be there FOREVER. Keep in mind that I was still young...and probably more susceptible to shiny marketing. LOL. (Also, this was many years pre-world wide web.)
Now the following statement of yours hits a universal nerve.
"The other point I'd like to make is that the MS medications (including the new monoclonal antibodies) were presented to me in a way that was fear based. Basically I was told that we don't know if it's doing anything for you, but you don't want to be in a wheelchair 5 years from now wishing you had taken it. Now...shell out thousands of dollars please and be happy we have treatments available that weren't on the market years ago."
Just how many of us chose to use one (or more) MS drug out of fear and not out of hope? There are enough fears already to accompany this disease that we don't need the fear of inaction to add onto it. Facts=good. Emotions in drug ads=not good.
BTW, I wish you a very long remission Bubbie. So glad that you found the correct diagnosis after so many years which led to the appropriate treatment approach for you. Now there is a success story.
Why do I have to always be the one with the contrary opinion? :-)
I am not a fan of over-regulating. And I'm not a fan of trying to prevent communication. I'm smart, and choose any medications I take based on the information that I gather from people, websites, forums. dr's, dr's staff, pharma literature. I don't watch TV commercials very often. I can't say I've ever been positively influenced by a drug commercial. It's marketing, just like a car commercial. PR/marketing for anything generally equals probable BS.
They more they advertise, the more expensive the drug. The more we regulate, the more expensive the drug. It seems to me that there are already plenty of FDA regs that try to prevent companies from making false claims about their drugs.
I can't get too worked up about this - I can say that I wouldn't want anyone who is not that able to sift through everything to be taken advantage of by big pharma having access to them. Yet, I'm not sure it's any different than it is right now. Anyone from any pharma company can tweet me and ask a question. I've seen websites that feature MS patients that are sponsored by a drug company who is just about to release a hot new drug. But that fact isn't explicit. So it seems manipulative. Right now, the pharmas do their selling directly to my dr's. And the dr's turn around and sell to me. I'm not sure it makes a difference to me who is giving me the information. And I have to ability to block tweets, filter emails, stay away from certain FB pages, request to be removed from a call iist.
So i guess I'm ok with sorting that stuff out for myself. I'd like to help protect people who might be vulnerable to the negative affects. I'm just not sure that stronger regs are the best way to do that.
I'm more inclined to fight a different battle. I'm not that keen on NMSS because I'm not convinced they are looking for a cure. The Myelin Repair Foundation strikes me much more positively. All the drugs we have now are merely hoping to buy us some time. Which is better than not buying time, but not quite good enough.
Of course, I've got MS and I've been in cognitive decline for 12 years. So who knows if I processed any of the information accurately :-)
Lisa, I feel confident you will do a good job of representing a well-rounded view point from patients, and I appreciate that you bring such topics up for discussion. I don't always get here to catch everything, but I really like the open communication.
Trish,
I often enjoy the contrary opinion. ;)
"PR/marketing for anything generally equals probable BS." - An important concept to keep in mind, regardless if the marketing is for soap or for meds.
It's interesting that you mention Twitter. Lately I have been able to follow conferences from afar, join conversations with others who are not in my direct circle of colleagues or friends, and develop friendships with others who might be looking at issues from a different viewpoint. Such is the nature of social networking platforms, we choose who we follow or communicate with...and that may include pharma folks.
The subject of unbranded websites warrants an entire discussion (which I happened to have with a Twitter/blog acquaintance who drove through town recently in between pharma-related conferences). From the patient's point of view, it really doesn't matter if a website is sponsored by a pharma company but no drugs are mentioned, or if the website is branded and featuring a specific product. Just look at the pharma company who is sponsoring and, if the patient is up on the latest MS news, know what products might be indirectly associated with the initiative.
I'm vlogging for such a site now with the intent that putting my silly face out there on video will actually help other patients looking for examples of folks dealing with this disease. Nice thing though is that there is no ambiguity as to who to the sponsor of the site is. What I don't like are the websites where it is practically impossible to find any reference to who funds it. MSVillageCanada is one such site. The funding source is hidden in the legal disclaimer on the website. I don't imagine that the "typical" MS patient is going to go through the number of clicks I did to find that information.
"I'm more inclined to fight a different battle. I'm not that keen on NMSS because I'm not convinced they are looking for a cure. The Myelin Repair Foundation strikes me much more positively. All the drugs we have now are merely hoping to buy us some time. Which is better than not buying time, but not quite good enough."
I don't doubt that Justine Lam's presence on Twitter, Facebook, and in the blogosphere has truly helped in connecting MS patients with the work that Myelin Repair Foundation is doing. She has done a wonderful job in interacting with us and letting us see the human side of the foundation and the scientists involved. Pharma (and NMSS) should take notice to see what successful interaction looks like.
Thank you for adding to the discussion. I keep coming back to the question of "how exactly do we want to interact with pharma on our social networking platforms, if at all?" And if it's not obvious, I am definitely in favor of greater access to information of the objective, in depth, reliable kind. 
Of course, I've got MS and I've been in cognitive decline for 12 years. So who knows if I processed any of the information accurately :-)
Lisa, I feel confident you will do a good job of representing a well-rounded view point from patients, and I appreciate that you bring such topics up for discussion. I don't always get here to catch everything, but I really like the open communication.
most of the drug ads on tv are either ignored or are fodder for jokes ("if you have an erection lasting more than 4 hours...") but in general, i think the way they are presented- "ask your doctor is this name brand drug is right for you."- is shameful. (perhaps too strong a word) but selling pharmaceuticals the same way They sell soup and laundry detergent only makes it appear that taking these drugs are no more of a big deal than...eating soup. i watch ads for heartburn medications, and think maybe you should figure out what it is that gives you heartburn and stop eating it. how many of our ills and complaints could be solved or eased by lifestyle changes? we are encouraged to turn to the pharmacy to heal us, rather than looking toward dietary and other lifestyle changes.
Hi Stephen,
More focus on prevention, diet, and lifestyle changes...not a bad idea. Now if the messages from companies were in how to adjust our behaviors so that we could avoid needing their products, THAT would be refreshing and revolutionary.
Good observation in questioning what exactly do we get out of the messages which are thrown at us already? I don't really pay attention to them, but when I want to know something specific, I really do want to have access to that information in an easy and obvious place on the web. Perhaps that's what pharma could improve - offer and present in-depth information (including everything that anyone, like me, would want to know.)
The problem facing pharmaceutical companies is that the broadcast model utterly fails them.
Broadcasting is too expensive.
Its ROI may be adequate for beer and cars which need to reach a wide audience but for MS, affecting as it does 0.0833% of the population or 1 in 1,200, it immediately falls below the level of statistical noise.
Narrow-casting, by advertising to doctors and the rest of the medical establishment in journals, is also fraught with problems. They're doctors, not patients.
The doctors etc. aren't the one with the symptoms. They aren't the ones with the need.
Advertising in the extremely few publications which come out periodically is also of limited exposure.
Advertising on podcasts, blogs and social media offers a possibility because they can be so focused that they DO reach the intended target.
For that reason,I look forward to finding through FaceBook, MySpace, Twittter and various podcasts (including mine.)
Charles,
Very interesting insights into broadcasting models. Being that you are a patient and a businessman which sells advertising space, you have a unique understanding of how to get the message to the right people at the right time.
Doctors aren't the ones with the symptoms - patients are the ones with the need. So true. Targeted awareness campaigns can be very helpful to patients, especially if they reach them at their time of need for that information. I know that when I am 'need' information, I want to be able to find it and I don't want to have to hunt too hard.
I like what you added (on Facebook) last night:
"That said, we should tell the pharma co.s to just give us the facts and never wax lyrical, or use scare tactics, or lie to us in the ads. I hate being talked down to almost as I hate talking with somebody who can't understand me.
Give us the facts, give us the odds, give us the benefits and then WE make up our minds. And when we give you feed-back, don't ignore it.
Social media is the use of 'crowd sourcing' as a resource. Social media is not just putting another megaphone in the hands of (with apologies to Marshall McLuhan,) the "Global Village Idiot.""
Well said.
A couple of disjointed thoughts...
I'm also not surprised that so few consumer advocates are present (invited?) at this thing - as with so many other conferences, hearings, etc. about aspects of health care, people who are actual consumers of the products and services are patted on the head and told to go home and let the specialists decide, whether those specialists are doctors, politicians or pharmaceutical companies. It is one of the reasons I do my best to reject the term patient, as it too easily leads us to the medical model of decision-making where the medical staff make the decision and the person who actually lives with the condition is a passive recipient.
I don't trust pharmaceutical companies. They are in a business to sell a product and as any businesses that sell products are going to do their best to increase sales and that includes presenting the best face of their product. When you're selling a couch or chocolate bar, that's less important, but when you're selling medication, it's a completely different story. So often when I read about a new drug being tested with positive or negative results, the article concludes by paragraph (at least) on how this news affected the company's stock prices - an unpleasant reminder of how much profits determine research. That said, I do think that advertising can be a valuable source of initial knowledge, sparking further research or cause you to go to your doctor and say "what about drug X?". I still remember the first time I saw a commercial for Lyrica for fibromyalgia - I almost cried, because seeing this commercial became an important validation of the existence of fibromyalgia (if pharmaceutical companies are selling drugs to treat it, it's real!). However, I do think that advertising should be regulated heavily and measures should be in place to keep pharmaceutical companies accountable for the claims stated in ads.
Which brings me to my last disjointed thought. I use Firefox as my Internet browser and have added a function called Ad Block - it blocks ads on webpages. Between that and recording most of the TV I watch so I can watch the program later while fast forwarding through commercials... well, let's just say I try to eliminate as much advertising for my life as I can. Smile
Lene Andersen
MyRACentral
Hi Lene,
you said:
"I still remember the first time I saw a commercial for Lyrica for fibromyalgia - I almost cried, because seeing this commercial became an important validation of the existence of fibromyalgia (if pharmaceutical companies are selling drugs to treat it, it's real!)."
I remember when those first commercials aired. The initial one was kinda depressing, and then they changed actresses to someone who was much more upbeat and active. That was an interesting shift in approach. But this is a good example at how a simple advertising can bring awareness (and validation) to the general public.
Unfortunately, ads like this can also bring ridicule. Look at the Restless Leg Syndrome commercials. I heard plenty of people joke about how that was a bogus diagnosis made up just to sell more medication. But there are several folks, with MS anyways, who seem to be affected by the neurological aspect of this condition and do find relief from available medications.
Regarding your last thought, I just recently heard of the Ad Block plug-in available for Firefox. I haven't uploaded it yet for myself but it sounds attractive. As for commercials on TV, I hardly watch any TV anymore. 
Thanks so much for coming over to comment. Some topics move beyond disease state and into common experiences as 'patients' living with chronic illness.
Good luck, Lisa. I have to be honest and say that I don't have a lot of anger or frustration with the drug companies. Have a family member and one of Bill's friends who both work for Merck....Must be my individual situation....I'm being completely honest here. So I don't really have much of a response....except I know you are passionate about this and I hope you give 'em hell!
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Hi Jen,
I too am so glad that there is diversity of strengths and passion in our MS community. Just imagine if we all had the same strengths and interests, there would certainly be some HUGE weaknesses left unattended to.
I did end up having a very nice time at the event last night. Then I was invited to dinner with a group of folks who work for HealthCentral directly and indirectly. Had some really good conversations, including one in which we discussed some of the silly approaches which pharma sometimes take in trying to make their product look more convenient than somebody else's.
In our conversation, I mentioned a video I came across just recently. Check out the "1 step vs. 14 steps" video comparing Rebif prep with Betaseron prep. http://www.mslifelines.com/rebif/why-rebif/treatment-differences.jsp I have a slightly difficult time believing that whoever designed this approach thought that it would really sell the patient. I was almost entertained.
I'm laughing that I'm even commenting again. 
I actually think that the ad has a good marketing strategy..... LOL.....I guess it depends on whether you want to refrigerate with no prep or store at room temp and assemble. Now don't kill me here......I did chose my med because there was NO refrigeration needed. Ever. But I guess some do opt for no-hassle prefilled syringes......Which is demonstrated in the ad......
DON'T BEAT ME UP, LISA!... I guess that's why I don't comment on these kind of posts on Brass and Ivory......And I sorta like John McCain sometimes.....! And his daughter Meghan....!.... OMG- I'm almost peeing myself laughing.
You know I love you no matter what, ya kook!
XOXOXO
Jen
PS: Aren't you glad I came here and voiced my opinion? UGH
Yes, I'm still awake. haha. OK, but on the video they forgot to show the person having to take Rebif out of it's individually-sealed container...all the pre-filled syringes have them. ;) And then, what about the added steps if the person wants to use the auto-injector. A bit more complication.
So did her process look just the way yours does when you are assembling Betaseron injections? Do you frown with concentration just as she did? Just curious.
P.S. It's perfectly ok if you like John McCain. He's a good guy.
"I'd much rather that they were open to 2-way conversation rather than simply pushing a single message or agenda. The question of "how can we make a positive difference in the lives of patients who live with MS? ....no matter if they choose our product or not" is one which I'd like to see addressed."
I whole heartedly agree Lisa. My problem with MS medications was that I was allergic to all of them. As soon as I stopped using Copaxone, Betaseron, etc...even Tysabri...I had no follow up. I am now off all MS medications and doing fairly well ironically but truthfully, I resent that the programs offered by Copaxone and Betaseron and Tysabri were only available to me if I used their drug. Made me feel like the agenda was to follow up on any side effects for their own maketing purposes rather than actually caring about me as a person with MS that is taking their brand of medicine.
Another issue I had was when I had a Lupus type reaction to Betaseron, the side effects were denied as being attributed to their medication. It left me in a precarious position with my health because my Neurologist was referring to their classic reported set of side effects. The people with Betaseron were not interested in documenting or validating my serious reaction to it and my Neurologist was just as passive.
I feel patient education and support in regards to MS meds should be left up to Physicians, Neurologists and trained Nursing educators that are "not employed" by the big pharma companies. A patient needs consistent support and follow up in regards to their MS meds and symptoms. When big pharma is allowed to provide a facade of support to the patient directly, it makes the patient vulnerable to being abandoned or frankly dropped on their a$$ if the medication has to be discontinued.
Hope that makes sense!
Hi Ammey,
It makes complete sense!! I was talking to someone last night about the very issue you bring up regarding the support programs not being available. I've been in that position with my RA since I'm not using any of the biologics. But fortunately, I've got a great rheumatologist and haven't seen to miss out on the advice and attention (although I do get the connection I need through RA blogs).
I'm very sorry to hear that it felt you were dropped on your ass for no longer taking the company's specific drug. I'm sure that a large part of the agenda is to monitor adherence (compliance) and possible side-effects.
Regarding the lupus-like reaction, are you aware that we as individual patients can report adverse events to the FDA directly? This was a topic at the FDA hearings today, being that people do not likely know that. I need to look into the matter further and write about it, but I don't yet know if there is a time limitation involved. You should check it out and report your reaction to Betaseron. I did put a link above in this post.
Patient education. Interesting point that it really should be coming for elsewhere besides the pharma companies. I was very fortunate to have a nurse at my neurology clinic who was dedicated to patient education and support. She's the one who trained me on injections, not someone sent by TEVA.
I'm switching meds and am scheduled for infusion next week (Rituxan). I did sign-up with their patient outreach program. We'll see what they have to offer.
I do hope that your family is doing well. Kids and parents too.
I prefer to get as much information, on a drug, that's possible. I can't rely on my Dr.'s to provide this when the info is so long. I personally don't pay too much attention to the TV or print ads, but I do read Internet ads, but mostly I go straight to the drug company and read the ISI and the Dr's prescribing info, which is usually much more comprehensive and in pdf form with statistical listings on all common and uncommon/adverse side effects. Due to my job, I have to read this so I can send members to the various drug sites so they can see for themselves what was deteremined in the clinical trial and in any post-marketing surveilance.
Unfortunately, this type of info is very medically dense, and I sometimes wonder if the readers understand it all, but I feel they will eventually figure it out. This way they can look up the stats on different rare side effects that aren't mentioned in the the Drug Co's ISI, or is in very sketchy detail.
As far as HealthCentral goes I appreciate the ads they have since they aren't buried by several click throughs. If you look at them they appear at the very top of the page and other prominent places. They can't include the entire ISI due to space issues, so I would like to see a link to the drug co for further info, but sending the readers to the most comprehensive explanation on all issues which isn't fully detailed in the ISI.
Thanks Lisa for addressing this!! BTW I watched the live FDA feed on this topic and found it very interesting, but I'm not sure how all of this will be worked out through regulations, since that usually means added cost to the consumer, and I already have many drugs my insurer won't pay for due to cost. Generics is all my insurance covers, so that really limits my choices.
Pam Flores (osteoporosis site at HealthCentral)
Hi Lisa,
I am glad you brought this up. Personally I have always wondered about the ethics of pharma advertising. The "talk to your doctor" nature of ads actually turns my stomach. I think there is something wrong with that picture...it is not as if they are describing the symptoms and saying talk to your doctor for treatment but talk to your doctor and see if XYZ is right for you.
I had an adverse reaction to Betaseron (it does not mean it doesn't work for someone else) but it did not matter. I wish I had access to info from actual Betaseron users who did not do so well...I would have seen that my reaction was not normal and gotten off sooner rather than later. Later on they sent me an adverse reaction questionaire but I had already lost a year of my life. 
Can't get that back!
I never pay attention to the ads- print, internet or tv!
Hi Pam,
Thank you so much for adding to the discussion. When I go looking for more information, I also tend to go to the Prescribing Information (PI) in addition to the Important Safety Information (ISI). Looking up the stats can be very helpful.
For readers in the MS community, here are examples of the Prescribing Info (6 pages in length) and the Important Safety Info (5 paragraphs) for Copaxone. I scrolled down to the bottom of the Copaxone.com homepage to find the links to this information. In my internet travels, I've discovered that this is the fastest way to locate this stuff without having to click through many pages of promotional text to find it.
It's interesting, though. When I was trying to locate information regarding a new drug I will be starting this week, the most thorough information (and what seemed most relevant to me in my search for answers) was intended to be a guide for the nurses who administer the drug. Now I wondered why exactly some of the information included in the nurse's guide was not included in the patient's guide.
As a patient I want to know this information!!
Watching the live feed of the FDA hearings was very interesting. To hear the viewpoint (and research) from different stakeholders sheds some light as to how industry (including the various service providers) struggles with making connections and interacting with consumers. I hope that whatever guidance eventually comes from the FDA does not result in higher prices to the consumer, although pharma has been raising prices at a tremendous rate anyways in recent years.
Hi Sherry,
The phrase which always gets me in TV drugs ads - "and if you cannot afford your prescription medications, [drug company X] may be able to help." Been there, done that. For awhile there, I would be compelled to speak back at the commercial.
Your story supports the need for patients to be able to share their experiences with others. Knowing what is a normal, undesirable side-effect vs. one which is not normal and warrants stopping the medication asap.
You can't get time back that's for sure. But I wonder, was the adverse event questionnaire easy to complete? Did you go through with submitting it?
My next post is on the subject of adverse events and reporting them to the FDA.
Hi Lisa,
I never did complete the questionaire! The reason being- I didn't feel good AND I felt they were trying to immunize themselves from potential lawsuits. It was from the company rather than from the FDA. A photo of it is on my postcard blog...
It took me a long time to get over the side effects of interferon. I called it the "Interferon-ing with my Life" stage. I had to stay off a certain amount of time before I started Copaxone. The funny thing is- the adverse reaction form came in the mail from nowhere, and I'm sure it was generated by my neurologist's reporting back to the company as she knew I was not doing well on it but she was not the one who started me on it. My thyroid was whacked, I could not shake the fever and I thought the treatment was worse than the disease. I wanted off. I think she was about ready to take me off but I got there first. I had severe goiter by that time and I was so done.
No one followed up from the FDA or anything like that.
I'm gonna have to go find your photo. In researching the information for today's post - Report Adverse Events Directly to the FDA MedWatch Program - I learned that our physicians are NOT required to report adverse events to the FDA, but the drug companies are.
I looked up the reported side-effects of Betaseron in both clinical trials and post-marketing. Hyperthyroidism, hypothyroidism, and thyroid dysfunction are listed in the postmarketing information in the DailyMed (NIH) information. So you're not the only one to have that experience apparently.
I'm so glad that you took yourself off the med and have found something else which seems to be working for you. It's interesting, I just noticed that I'm experiencing less anxiety in recent weeks. I wonder if the increased anxiety and irritability I've developed over time was really a side-effect of Copaxone for me.
It's starting to seem like the MS meds are really just a crapshoot. The more I read about folks switching between meds for various reasons, the more it is obvious that there is truly so much which is not understood about how all of this MS business works.
Interesting! I can't tell you where the adverse reaction questionaire came from. I do know I did not complete it.
It would not surprise me to know people had reactions to Copaxone and had to go off it. We all have different reactions to things. I became deaf from an antibotic as a baby. (Streptomycin) It doesn't mean the antibotic is bad, it means in some people it causes deafness.
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Well, you know how highly I regard you, Lisa, and there is no one I would feel better about speaking up for me than you---that said, here is what I think: The FDA should regulate these drug makers up the wazoo! YES I have complained of side effects, NO, no one gave a damn and in fact I was simply told to wait a few days and take more. Do I trust drug makers? NO. What is their motivation to be truthful unless they are caught? And they know people will stop taking their WONDERFUL-EVEYONE'S DOING IT-Drug if it bothers them and just shut up. With that in mind, the chances of a death are lowered so why shed ugly light on their WONDERFUL drug? The FDA is between a rock and a hard place---patients need help YESTERDAY and drugs need humans to take them over many years to see the true course of events. Those of us with MS, a disease that we still don't know the cause of, is being thrown the drug book at in the hopes that something will work. Beacuse MS can start off horrible, become just fine on its own, perhaps even never bother a person again; because it becomes very bad and very good all by itself (and NO ONE KNOWS WHY)---Eureka! The perfect disease for a drug! Get everyone to take it immediately (because that is when MS will naturally get better in most cases) and wow! The stats look great! Miracle drug! Once the course of MS gets worse, just sell another drug! Or IV some chemotherapy which was found by accident to put some MS patients into remission along with the cancer. (NOBODY KNOWS WHY) Where is the truth? "Here is an MS drug. We don't know how it slows the progression of MS or if it really does, but get many MRIs and you and your Dr, will SEE that changes occur. You will not be cured by this drug or perhaps not even helped at all. We are hoping that the placebo effect will carry many of you through until you become secondary progressive. Don't you feel better doing SOMETHING rather than nothing? If you every find it is not helping, just call our 800 number that we set up JUST for you! We will tell you why you should just keep taking our drug and we have your doctor;s name here and we will call and let him know you have given up, you pathetic, lazy person. We will motivate you! No, don't try another drug unless we own it too. They are no better than us, THEY don't know what causes MS EITHER!
I want side effects in big print. I want "We don't know what causes MS or if this drug will help you." I want payments to doctors from drug makers STOPPED. I want an end to people only post DX MS 10 years advertising by way of pretty, laughing, walk-athons sponsored by drug makers to stop. I want TV ads to stop or be subject to fines if they don't simply say they have a drug for___ call for info. That info must include all side effects in large print and include other drugs in same category. That info should direct people to a single entity that researches these drugs, one not associated in any way with financial gains from drug makers. When bad news about the drug comes out it should be sent to the patient, who should be advised to see their Dr. ASAP. Online sites about diseases should state loud and clear that Drug Maker _______ is paying for this site and they make the following drugs______. (This must include any subsidiaries) If there is deception to this rule and its meant context, the reader should have a number to call and alert an agency that will close the site immediately or sock em with a huge fine. A good example of an honest ad is for Exelon patches for Alzheimer's, even the TV ads do not show a rejoicing patient and it is made clear that your loved one will still suffer from Alzheimers, but that the drug may help a bit. (They NEVER say, "Recent research shows it may even possibly REVERSE Alzheimer's!" ) Only in MS do they feel such freedom, since MS "may" even "possibly" reverse damage on its own.
But here is what I think: this mtg is already a don deal. FDA will impose a few simple regs, the drug makers will agree and tell how MUCH they care about their paitent's health and just want to make sure they are reached. The "patients" will tell how helpful web sites are and that they NEED info. It will end on time, maybe a bit late to impress the sincerity of either the FDA or Drug makers, all will have drinks and goodies, shake hands, laugh, pass out some info/business cards, and adjourn. The drug ads and web sites will fill our eyes, the FDA will be so swamped with other work that the attendees will recall little from the mtg in a few months. The patients (few if any in power chairs) will be so pleased. And by mid 2010 the onslaught of drug ads will begin. The oral MS pill will be a bizillion dollar seller and everyone will be singing its praises, every newly diagnosed MS person from 5---up in age, every "possible MS" will leave with pills in hand. And there still will be no known cause for MS, no cure, no way to repair damage done, and the world will believe MS is simply a disease you take a pill for and live a normal life. Anyone who has a negative take on all this (like, ah-hem me) will be ostracized and dismissed as someone with a negative personality. And the beat goes on.
Diane,
I wish I were speaking up for the consumers. Like many others, I did not read about this hearing until just after the deadline for requests to speak had past. Something I find interesting is that, according to John Mack's quick analysis, only 7% of the speakers come from pharma companies and 11% are industry advocates (such as PhRMA). The vast majority of interested parties represent industry service providers and health websites (65%).
Reading your comment has sparked an idea in my head. "Life cycle of a patient diagnosed with MS and their pharma company." Before I was even officially diagnosed, I knew which disease-modifying medication I wanted to try. Where did I get the information with which to make a decision? Primarily drug-specific websites and other patients on a forum. I went into that official appointment with my choice made...and my neurologist agreed to go along with my choice.
Then the matter of insurance coverage arose. Drug company/patient interface group, Shared Solutions, reviewed my coverage and referred me to the non-profit drug assistance program which they support (but do not control - another pitfall of Medicare Part D regulations). So I'm bumped to the objective non-profit whose objectives (or definitions of need) might not align with my own.
Back to the patient contact group. Shared Solutions wants to make sure that your answers go answered which is good. When newly-diagnosed you've got lots of questions and starting these drugs can be overwhelming for some. Then they keep checking in with you at regular intervals. This becomes annoying as your answers to their questions become redundant....then you realize that they are monitoring the experiences of patients during their medication. Ugh! "Just leave me alone, please."
But now that the frequency of the monitoring has slacked off to about once a year, and after becoming much more online pharma savvy, you realize that post-marketing monitoring of patient's side-effects and experiences is actually a very good thing. Shared Solutions is listening to the patients on behalf of Teva Neuroscience. This realization comes at just about the same time that you have decided to stop using said drug. Hmmmm....
And then your mind wanders to the newly-diagnosed patients who choose NOT to use any drugs. Where do they get their information and support? Do they have nurses calling them regularly and who are available to answer questions? I don't think so. Are they even aware of what services are being offered to other patients who have simply chosen to use one drug or another? Probably not. So is there benefit to having a relationship with your pharma company, or rather its patient support interface group?
And would we want to have that same contact on Twitter, Facebook, health websites, or in blogs? Now that's a question which I think is worth pondering. And is pharma capable of moving outside of promoting drugs and comparing efficacies to focusing on the patient's needs, drug or no drugs.
And if there are not studies to show the benefits of certain medications we commonly use off-label to treat the symptoms associated with MS, how can we get good information about those treatments and patients' responses. I can talk about baclofen and provigil because I am not "pharma" but this would be considered taboo coming from an official representative. Although I doubt that any patient truly cares if the drug is off-label or not. We are not bound by the requirements of FDA regulations.
Now, I've gone off on a tangent but these are interesting discussion issues. I, too, respect your thoughts and viewpoints Diane and I've so glad that you feely express them. Thank you.