This is the final part in a two part series Opinion Editorial on WEGO Health and the FQ Community. You can read part one here.
There are many controversial ideas, theories, and personalities in the Fluoroquinolone (FQ) community. It is what makes us strong and rich in our diversity. Many of these ideas are debatable and they can, and do, result in some spirited debates that usually enlighten us one way or another if critical thinking is in play. One thing however that is not debatable, or should not be, is pharmaceutical company involvement in our community.
Many, if not most, individuals who participate in health communities in the internet’s ‘health space’ (the chunk of cyberspace devoted to health related issues), are their because of an organic disease process. We are different. Our goals diverge from many, if not most, online health communities.
We are here because of a class of pharmaceuticals that are dangerous and have created a perfect storm scenario that has devastated untold lives, families, and even threatens to damage our future generations through genetic influences, irresponsible usage, and even environmental contamination.
Recently, I wrote an opinion editorial stating why I believe that WEGO Health Was NOT Consistent with FQ community goals. In the article I documented how several of WEGO Health’s executive positions are populated by former pharmaceutical executives whose companies have ties to Fluoroquinolones and whose mission in part is to “… connect leading pharmaceutical and health companies with WEGO Health’s network of online health activists…”
Response to the article was positive with several people from our community contacting me directly saying they had no idea of the pharma connection and graciously pulled their support from WEGO Health realizing the serious conflict this poses to the FQ community. Nevertheless, some from within our community still believe that the WEGO Health Activist’s Awards are somehow ‘separated’ from WEGO Health and a worthy goal to pursue. They confuse the non-typical FQ community with the majority of organic disease driven health communities of WEGO Health. In addition, they make a distinction that since the awards are not sponsored by a pharmaceutical company they are somehow acceptable. I am sorry but I fail to see the disassociation from any angle.
However for those who still fail to see a connection, let’s look at the WEGO Health activist award judges.
A cursory look at the WEGO Health activist award judges and we find Julie Holcomb, A WEGO Health Activist award judge. Julie Holcomb is an executive (Director and Team Leader) for Pfizer and has worked in the pharmaceutical industry for nearly 20 years, specializing in marketing strategies and programs to support healthcare professionals (1)(2). Pfizer, as you remember, sold the failed Trovafloxacin, a fluoroquinolone, that was withdrawn from the market due to the risk of hepatotoxicity (3).
Looking further, we find other connections to pharmaceutical companies such as judge Wendy Blackburn. Wendy Blackburn is the Executive Vice President of Intouch Solutions (1)(4), a leading marketing agency serving the pharmaceutical industry. Some Intouch clients are pharmaceutical giants like Baxter and Sanofi (5). Sanofi-Aventis sells a fluoroquinolone in Europe (6).
Time and space prohibit me from scrutinizing the entire judge’s panel in depth but you see my point.
Listen, we are not debating the color of the carpets or the color of the drapes. We are talking about a corporation, WEGO Health, whose purpose is to engage pharmaceutical companies into health space; Pharmaceutical companies who have ties to and have manufactured and profited from Fluoroquinolones, and who support WEGO Health. WEGO Health in-turn supports these same pharmaceutical companies, such as Johnson and Johnson, Novartis, Sanofi-Aventis, Endo, and more. Everyone in our community who pursues or supports the WEGO Health Activist awards is supporting pharmaceutical companies that support Fluoroquinolones AND they are supporting pharmaceutical intrusion into our discussions. Although this should be a ‘no-brainer’ by now,let me spell it out a little more clearly.
Those who pursue the WEGO Health Activist Award are by definition a WEGO Health activist, correct?
WEGO Health Activists want Pharmaceutical involvement in online health communities. They want pharmaceutical companies to regulate the data that is on social media. The following is from WEGO Health document entitled “Health Activists Implore Companies to Participate In Social Media, Correct Misinformation.”(7)
82 % of WEGO Health Activists agreed misinformation about Health Care Companies’ products that is left uncorrected online can be harmful to the public health.
Also 82% agreed Healthcare companies have a responsibility to correct misinformation in social media if they become aware of the content.
Seriously? So I am to assume those in the FQ community who are WEGO Health activists or their supporters want Johnson and Johnson, Bayer, Sanofi and others involved in our health communities to regulate our opinions and ‘misconceptions’ about Fluoroquinolones?
From the same document let’s take a look at what WEGO Health Activists are published as saying about pharmaceutical companies.
“Novartis does the best job – you see Novartis pretty much everywhere – particularly in cancer related discussions.”
“ Sanofi – Aventis is actively trying to involve the diabetes community through a fantastic social media manager”
“painaction.com, which is Endo Pharmaceutica, is a fantastic online community . It has articles, lessons, personal stories, self-checks, tools, pain library of communication skills, knowledge base, self-management skills, emotional coping, med safety…”
Just image Johnson and Johnson, Bayer, Sanofi being pretty much everywhere in our discussions to regulate our mis-information.
From another WEGO Health Document entitled “Social Media Won’t Wait: Health Activists Speak Out, Industry Speaks Up”(8),“If online health communities are an unruly high school, then Health Activists are its dedicated teachers – and WEGO Health is the teacher’s lounge. We help leaders to come together, to learn from each other, and to go back to their classrooms better at their craft.”
In my opinion, we, the FQ community, are part of the ‘unruly high school’ they are referring to. We represent one of the last bastions of expressive freedom in regards to telling the truth about what has happened to us. Pharmaceutical companies want to control that conversation and are using companies like WEGO Health to attempt to gain control and influence that conversation.
From this same document WEGO Health uses cartoonish propaganda, (shown on the right) to show the minimal 3% who do not want pharmaceutical companies to participate in online health discussions.
Recently the FDA made a terrible proposal that would allow the pharmaceutical companies to control their own drug information content! I wrote about the proposal here. The proposal would strip all relevant meaning from current laws requiring FDA oversight of drug information, which includes its risks, benefits and other prescribing information. The FDA said it would allow distribution of new information published in medical journals showing that the severity or rate of a side effect is lower than described on the product label. The new data could even “call into question a causal relationship between a drug and an event in the approved labeling.”(9)
Under these new standards our complaints (the FQ Community) could be relegated to the “causal relationship between a drug and an event” that is dismissed and corrected by the drug company.
According to WEGO Health…”In particular, Health Care Companies have an obligation to the community to fight misinformation by contributing accurate content about their products, and to follow regulations.” This information will be from drug companies that could have the right to ‘police’ their own data in accordance to their own standards.
Whose information will you believe? Will you believe what you have personally experienced? Or will you believe what the pharmaceutical companies’ distribute, re-written in their own words? And distributed through companies like WEGO Health?
Wake up and realize that, for us, WEGO Health and others like it represent a double edged sword. They represent an encroachment of pharmaceutical corporations into the freedom of the internet’s health space, an encroachment that will take place through tacit control of health activists, lukewarm FDA regulations, and a re-interpretation of your experience in light of official findings.
Let’s not get used like pawns in a board game.
Like I have said before, I cannot support WEGO Health as it facilitates the pharmaceutical companies’ intrusion into online health space. At the bare minimum WEGO Health Activist awards promote WEGO Health but as I have stated their purposes, mission, and connections run much deeper and quite contradictory to the goals of the FQ community.
Oh by the way, GlaxoSmithKline Inc., as represented by the Medical Information Working Group, strongly supported the new abhorrent changes proposed by the FDA, as did many other pharmaceuticals companies. One of GlaxoSmithKline Inc.’s former executive’s is a vice president at WEGO Health.
I Say NO to WEGO!