Thursday, March 22, 2012

Freedom of Speech: Pharma is watching, Who Else?

Social websites are popular, very popular. Facebook is the number one watering hole for people from all walks of life. Along with Twitter, Linked In, Stumbleupon and countless other social sites, Facebook fills a need for human connection. Much of it is fun and engaging. Some of it is dangerous. They have complete control over advertising and content. For this and other reasons I have decided to pull out my old Domain name and start a fresh website about my journey through MS/CCSVI. I can’t talk on Facebook about many things. Soon I will not need to worry about it. 2&1/2 years ago I began keeping copious notes and downloading information about CCSVI, Social medical Sites, Pharma Café MS websites …well you get my drift. Once a respected member of a “social Medical Site” specifically , “Patients like Me”. A few of us there began to question the motivation behind these sites, advertised as free support sites for people with MS and other chronic conditions. They have graphs, medical information , and other resources all tied neatly in one place for people to educate themselves about MS. Most importantly it is free and provides the one thing that most MS’ers crave: validation. Members talk about everything from parenting to recipes. The administrators are primarily interested in gathering information for Big Pharma. This particular website prides itself on “transparency”. They are quick to explain that they are a for profit website and sell information to anyone who will pay for it. There is not another entity that does more research on people with Multiple Sclerosis than the drug companies. Lilly forks over a pretty penny to find out what patients have to say about their drugs. In addition to what is in my opinion unscrupulous harvesting of personal information, there are other interested trolls. Many of the links tucked away in an encrypted folder are no longer active websites. Some have changed their names or slipped back into the outer darkness of the World Wide Web. What follows I thought might be of interest. Here is a sample of the information we willingly provide for all to peruse. These are drug companies keeping an eye on their lab rats. All of this was available to anyone online, including names, and personal information. I have at least 200- 300 pages of similar material. This was among the most innocuous. This is copied and pasted. I didn’t edit it other than to highlight a few lines in yellow. Social networking for pharmaceutical companies (PLM) Friday, November 05, 2010 5:44 PM Social Media Monitoring and Measurement in the Pharmaceutical Industry - Document Transcript 1. Social Pharmalytics Betaseron Sample Buzz Report March 1 2010 - June 7 2010 2. Social Pharmalytics Table of Contents Buzz Analysis 2 Betaseron Influencers 2 Multiple Sclerosis Communities 2 Pharmacovigilance 3 The Liberation Treatment 3 Competition 3 Sentiment 4 Recommendations 4 Quantitative Insight 5 Filtered Quantitative Insight 5 Unfiltered Quantitative Insight 9 Important Buzz Excerpts 14 Neutral/Mixed Sentiment 14 Positive Sentiment 17 Negative Sentiment 21 1 3. Social Pharmalytics Buzz Analysis “Buzz Analysis” comments on top-level findings from our research. Betaseron Influencers There are certain members of the Multiple Sclerosis community that are considered “influencers.” They tend to speak often about Multiple Sclerosis, and the drugs surrounding treatment. We are monitoring these individuals, as they are a consistent form of information regarding Betaseron conversations online, and their opinions tend to be seen by large numbers of people. Phyllis Connor Seals Phyllis is active in responding to people asking about Betaseron and Avonex on the National Multiple Sclerosis Facebook page. She advocates the use of Betaseron because of the benefits of subcutaneous vs. intramuscular injections. “Stan” Stan runs a Multiple Sclerosis support group on MySpace, visible by over 3,600 people. Presumably a large percentage of these people are concerned with Multiple Sclerosis, and thus it is a highly visible location for those seeking information on MS and drugs that treat MS. Two discussions highlighted in “Important Buzz Excerpts” below (pages 16 and 26) are from this blog. Multiple Sclerosis Communities There are a large amount of Multiple Sclerosis communities online. These communities are varied in form and content. These communities can be used for (1) online advertising, (2) informational outreach, and (3) market research. Find the complete list of Multiple Sclerosis communities in Appendix A 2 4. Social Pharmalytics Pharmacovigilance In the online conversations we found, the following side effects to Betaseron were mentioned: - Depression (pg.25) - Knots (pg.16) - Sickness/flu-like symptoms (pg.16 & 21) - Weight-loss (pg.26) - Even though patients should not use Betaseron when pregnant, there were several comments that mentioned accidental or inadvertent use while the patient was pregnant, with no noticeable side-effects. The Liberation Treatment In M.S. communities, we uncovered several discussions regarding the “liberation treatment.” Although the volume of discussions is low, MS patients are certainly conversing about the Liberation Treatment online, and some are recommending it to others. We did not initially track sentiment regarding this, as it is not a direct competitor, but we can do more research to uncover the breath of these discussions and their overall nature if necessary. Competition - In Anderson, South Carolina, Tysabri sales rep and neurologist are hosting sessions to pitch Tysabri and speak negatively regarding the competition. This resulted in negative online conversations regarding Tysabri. - Betaseron has a competetive advantage over Avonex because some people prefer subcataneous injections over intramuscular. - An often quoted competetive weakness of Betaseron is the frequency of injections compared with other drugs. 3 5. Social Pharmalytics - A great deal of MS patients mention doing their own research. This highlights the necessity for accurate (ideally third party) information online that can substantiate the advantages of Betaseron. - A competetive advantage of Betaseron stated by consumers online is that it does not need to be refrigerated. - Some MS patients are under the impression that Copaxone has “barely any side effects.” We found this specific sentiment mentioned more than 3 times in the specified date range. - Online conversations regarding Betaseron are significantly lower than the competition. Tysabri and Copaxone each have over 3x as many mentions as Betaseron. Sentiment In the last three months, there is more positive sentiment (19%) than negative sentiment (11%) in the conversations regarding Betaseron online. If we perform a buzz scan for a larger date range, we can assess the trends regarding online sentiment of Betaseron. There are also extremely negative comments (especially pg.26) regarding Betaseron. See “Important Buzz Excerpts” below for poignant comments regarding Betaseron. Recommendations - Focus on the community for further monitoring. Automated aggregators cannot access this information because a subscription is required, but manual monitoring is possible. - Perform a “Buzz Scan” going back as far as possible, to determine trends in conversations relating to Betaseron over time. - Focus Betaseron online research on Marketing threats/opportunities, Pharmacovigilance issues, and Customer Service issues, as opposed to a broad search, which will allow for increased efficiency. - Evaluate the volume and sentiment of conversatoins surrounding the “liberation treatment.” 4 6. Social Pharmalytics (Filtered) Quantitative Insight This section shows graphs compiled based on our filtered data set. The mentions analyzed in this section have all been reviewed for accuracy by our team. Buzz Volume This graph shows the volume of mentions of “betaseron” or “beta seron” over the last 3 months. Analysis: The recent spike in mentions is mostly due to mentions on Twitter regarding the “myBETAapp” Betaseron mobile app. These mentions are overwhelmingly neutral and are mostly news-related. 5 7. Social Pharmalytics Topic Cloud This graph shows the popularity of certain terms that are mentioned in conjunction with “Betaseron” or “Beta Seron.” Analysis: Betaseron Competitors are obviously often mentioned in conjunction with Betaseron. In genral, there are few unexpected topics mentioned in conversations that mention Betaseron. 6 8. Social Pharmalytics Media Channel Distribution This graph shows the distribution of mentions across different social media channels. Analysis: Blogs are by far the most-used means of online discussion regarding Betaseron. Most of the blogs mentioning Betaseron fall into three categories: news, aggregation, and personal. Personal blogs are the most important, providing mentions that are credible and that spark discussion. 7 9. Social Pharmalytics Buzz Sentiment This graph shows the distribution of positive vs negative vs neutral mentions of betaseron. These mentions are first aggregated and analyzed by an automated tool, then each mention is individually reviewed by an analyst at Social Pharmalytics. Analysis: Mentions regarding Betaseron are overwhelmingly neutral, due to RSS news feeds on blogs and microblogs. Most negative mentions are in regards to individual side effects, and are not particularly poignant. The most pertinent positive and negative mentions are included and specifically highlighted in this report. A full list of mentions regarding Betaseron can be found in Appendix B. 8 10. Social Pharmalytics (Unfiltered) Quantitative Insight This section shows graphs compiled based on our unfiltered data set. Therefore, every mention in this data has not been reviewed for accuracy. We conservatively estimate our unfiltered accuracy to be at 70% - 75%. Discussion Volume: Competition Analysis: Of the four MS drugs above, Betaseron has the lowest volume of discussion online. The most- discussed are Tysabri and Copaxone, each with more than 3x the mentions of Betaseron. 9 11. Social Pharmalytics Discussion Sentiment: Competition The graphs below compares sentiment of Betaseron competitors online. Note that graph scales are not proporionate. Avonex Betaseron 10 12. Social Pharmalytics Tysabri Copaxone Analysis: Avonex has more than twice as many negative discussions than positive discussions, giving it the worst sentiment ratio. Betaseron and Tysabri have the highest sentiment ratios, but the Tysabri statistic is more meaningful because there are more mentions overall. 11 13. Social Pharmalytics Analysis: Facebook is a large source of conversations relating to Betaseron. The majority of Betaseron discussions come from the US, but there are a significant amount of discussions from the UK, Canada, and Germany as well. 12 14. Social Pharmalytics Analysis: These statistics are only available from a small number of conversations, and thus should be taken lightly. That said, based on this data, females are much more likely than males to write something online about Betaseron. Such gender data is not surprising, because women are more likely to contract MS. All of the conversations where age could be measured fell into the 36-50 age range, with a majority in the 36-40 range. 13 15. Social Pharmalytics Important Buzz Excerpts April 25 - May 25 Author Name: Will & Sara Collier-Byrd Country: US (South Carolina) Relationship to Betaseron: Sara was diagnosed with MS in Dec. 2008 Contact Links:, Link: Date Published: May 13, 2010 at 11:20 AM Media Type: Blog Sentiment: Neutral Excerpt(s): “AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health.” “It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.” “The meeting started with him saying no one can tell you what drug to take, but the message that followed was very different. Essentially, the message was that interferons and betaseron are bad and don’t work and that the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms and that people just like to get high. We were all but promised that people don’t die from PML and that MS patients no longer have any attacks once they’re on Tysabri. Following the doctor/patient bullying session, the sales rep came over to give me his expert medical advice. The whole event left me seething. If I decide to take the risk and go on Tysabri it isn’t going to be the result of the 3 questionable men running the show last night. PML is a scary thing and no one should be mocked for fearing it. The statistics presented last night (if you can trust them) are that only about 1/4 of people on Tysabri who develop PML will die from it, but the rest will be left with permanent disability ranging from mild to the need for life support. 1/1000 Tysabri users will develop PML and your chance of developing it increases with use.” Screenshot: 14 16. Social Pharmalytics Name: “Poppstarr” Sex: Female Relationship to Betaseron: Currently taking Rebif Link: stories-more-inside%E2%80%A6#comment214107 Date Published: May 24 2010 Media Type: Question/answer site Sentiment: Neutral Notable: Promoting the “liberation treatment” Excerpt(s) : “There is a new 'radical' therapy that hit the web recently. Here is a link about it: liberation-treatment/#clip237617 I haven't had a chance to talk with my doctor about it yet, but believe you me, I am and will.” Screenshot: 15 17. Social Pharmalytics Name: “Pretty” Sex: Female Relationship to Betaseron: Author will start Betaseron in a few weeks Link: Date Published: May 6, 2010 4:37 PM Media Type: Blog Sentiment: Mixed comments Notable: Very popular blog - “422,447 Visitors! WELCOME TO THE BLOG: 6,121 Stories with 43,674 Comments & Tips!” Excerpt(s) (multiple authors): “You could check this out perhaps:::“A lot of people are taking beta interferons who should not be and it may make them actually worse,” Lawrence Steinman, a neurology professor at Stanford University near Palo Alto, California, said in a March 25 telephone interview.” “I spoke to a nurse about early March of 2010 and when I complained of how lousy the Avonex made me feel (I've been using Avonex since... See More 1998 and it always gave me flu like symptoms for 2 to 3 days) she recommended eating fresh (unprocessed) pineapple... before (about an hour to ninety minutes BEFORE) I inject because it has an enzyme in it (Bromelain) that helps lessen the side effects significantly, particularly if I nap after injecting. FYI: It is a natural anti- inflammatory. She also told me it had to be fresh (but I did have one MSer tell me she used canned and felt it still helped). I find that the more pineapple I eat, the more it helps.” “I Have been on Beta seron for 15 years. I do have the knots but I am still walking and have never veen in the Hospital. Talk to your nurse about the knots but never forget to take the shot.” “I've been on it for almost two years. I don't get the flu-like symptoms as bad as I used to when I first began. However, I hate the frequency of the shots and the skin reactions stick around weeks after the shots. I look like I've been beat up. It's hot right now and I cannot wear shorts! :( But my neuro says the Beta is working.” “I LOVE IT !! IT WAS THE FIRST ONE TRIED ON ME AND I HAVE HAD NO MORE LESIONS SINCE STARTING IT [...] YES, THE HAVE A 24/7 NURSE WHO WILL ANSWER ALL YOUR QUESTIONS [...] I HAVE HAD NO PROBLEMS SINCE AND LOVE THE NEWER SMALLER NEEDLES. I DON'T EVEN FEEL THE INJECTION UNLESS ONCE IN A BLUE MOON I GET A DULL NEEDLE” Screenshot: 16 18. Social Pharmalytics Name: Tina Beck Sossomon Sex: Female Country: US Relationship to Betaseron: Started Betaseron April 29, 2010 Links:, nationalmssociety/posts/383812914314#!/nationalmssociety?v=wall&story_fbid=383812914314 Date Published: April 28, 2010 at 10:29pm Media Type: Facebook Wall Message to “National Multiple Sclerosis Society” Sentiment: Positive Excerpt(s): “My Betaseron arrived via UPS this morning, and my training session is scheduled for tomorrow night. I'm scared (of the needle) and excited (for getting the prevention ball rolling) at the same time.” “That left me teetering between the Betaseron every other day and another one that's give 2-3 times a week. After weighing the pros and cons of those two meds, I ended up choosing the Betaseron. Betaseron meant getting stuck with a needle a few extra times a month, but the Betaseron pokes are reportedly less painful than the 2-3 times a week shot. That was my deciding factor. [...] I was pleasantly surprised to find out that the Betaseron does not need to be refrigerated. :)” Screenshot: 17 19. Social Pharmalytics Name: Phyllis Conner Seals Age: Unknown Country: US (East Peoria, Illinois) Relationship to Betaseron: Took Betaseron at one point Contact:, Link: Date Published: April 28, 2010 at 11:18pm Media Type: Facebook Comment on Wall Post (referenced above) Sentiment: Positive Excerpt(s): “Had to do my own research, then found a couple of videos and decided on Beta because I was more comfortable with subcataneous injections instead of intramuscular. But that's just me.” Screenshot: 18 20. Social Pharmalytics Name: Phyllis Connor Seals Country: US (East Peoria, IL) Link: Date Published: May 27 2010 at 2:37pm Media Type: Facebook Discussion Sentiment: Positive Notable: Competetive Advantage Excerpt(s): “Thanks Aiiwa. I made the choice for Betaseron over Avonex (the 2 choices my neuro first gave me) because I thought I'd personally do better with subcataneous over intramuscular.” Screenshot: 19 21. Social Pharmalytics Name: “LostInChicago” Sex: Female Relationship to Betaseron: Father is taking Betaseron Link: stories-more-inside%E2%80%A6#comment213288 Date Published: May 23 2010 Media Type: Question/answer site Sentiment: Extremely Positive Notable: Raving review about how Betaseron has changed her family for the better Excerpt(s) : “He has been taking Betaseron for over 12 years. The shot has changed his life. Prior to it, he would have severe attacks every other year or so. He hasn't had one since!” “I love Betaseron, & what it's enabled our entire family to do by stabilizing MS.” Screenshot: 20 22. Social Pharmalytics Name: Luciana Venezia Hernandez Sex: Female Relationship to Betaseron: Was using Betaseron but switched to Copaxone because of liver issues Link: Date Published: May 26 2010, 12:19am Media Type: Facebook Fan Page Wall Sentiment: Negative Notable: Comment asserts that Copaxone is better suited for a young adult lifestyle because of the injection schedule Excerpt(s) : “I was on Betaseron but it started to effect my liver but i was great on it other than liver issues, copaxone i find, much easier. Heres why, betaseron is supposed to be taken at night to avoid any flu like symptoms, seeing how we are young & in our prime, i just found it interfered with my nightlife. :) you have to mix it, then if shot night lands on date night i found myself rushing home & not being able to enjoy myself. But with copaxone its just part of my morning routine. Breakfast, shower, shot, brush teeth then off to the gym or yoga, etc. Very easy.” Screenshot: 21 23. Social Pharmalytics Name: Ruben Adjip Sex: Male Relationship to Betaseron: Currently taking Betaseron Link: Date Published: May 17 at 2:28am Media Type: Facebook Status Update Sentiment: Negative Notable: 233 friends may have seen his comment Excerpt(s) : “Not a good med night, tired of taking this Betaseron...” Screenshot: 22 24. Social Pharmalytics Name: Angie Glenn Holmes Sex: Female Relationship to Betaseron: Recently started taking Betaseron Links:, http:// Date Published: May 18 2010 at 4:46pm Media Type: Facebook Status Update Sentiment: Negative Notable: Extremely negative comment. “FML” is an acronym for “Fuck My Life” Excerpt(s) : “I know this shit is gonna hurt, its the same as avenox but just more frequently, and that shit makes me sick every week. I’d rather drag my fuckin leg” Screenshots: 23 25. Social Pharmalytics Name (blog owner): Dr. Cameron Jackson Age: Unknown Country: US (CA) 831 688-6002 P.O.Box 1972, Aptos,CA 95001-1972 Link: Date Published: (blog post) Sunday, May 16th, 2010 at 5:30 pm (comment) November 30, 2009 @ 10:11 am PST Media Type: Blog Sentiment: Negative Notable: Over 50 comments Excerpt(s): “As I have had MS for 14 years, take injections every other day, for 14 years at now, at cost of 2400.00/month for one med. Most of you can go ________. I am in luck though, with exercise, diet, family and attitude, I am completely mobile. I can not say it is due to the fact of betaseron, it only slows the progression, I wouldn’t know, I’ve never been off the stuff. I do know the shots hurt, that’s where the attitude goes bad.” Screenshot: 24 26. Social Pharmalytics Author: “musicman” Author: Unknown Country: Unknown Relationship to Betaseron: Been on Betaseron for 3 months Link: Date Published: Wed May 05, 2010 2:44 pm Media Type: Forum Thread - Initial Author Sentiment: Negative Excerpt(s): “I have been experiencing an increase in depression since I started Betaseron. It's been three months now and my mood has steadily declined.” Screenshot: 25 27. Social Pharmalytics Name: “Cherokee Girl” Sex: Female, 56 y/o Relationship to Betaseron: Had an adverse reaction to Betaseron Link: Date Published: May 2 2010 at 4:24pm Media Type: Blog comment Sentiment: Extremely negative Notable: Says that the Dr. heard bad things about Betaseron Excerpt(s) : “THE DR. SWITCHED ME TO BETTASERON, THAT ALMOST KILLED ME I HAD LOST 75 LBS. FAST. THE DR. CALLED ME AND SAID DO NOT TAKE ANYMORE BEATTSERONE BECAUSE HE HAD READ SOME BAD THINGS ABOUT IT. HE DETOXED ME AND HAD NO CHOICE BUT TO PUT ME BACK ON COPAXONE, THAT WAS 13 YRS AGO AND AM SO HAPPY HE DID BECAUSE I AM DOING FANTASTIC ESPECIALLY SINCE THEY CAME OUT WITH THE SMALLER NEEDLE. “ Screenshot: 26


Anonymous said...

wow, I'm glad I never joined any of those social networking sites.
And I also thank God I stopped taking their DMDs.

God bless!!

Unknown said...

Good luck to you and thank you for your comment.