A recent topic came up about patient advocates being paid for their efforts and the importance of transparency in those efforts. Transparency has always been important to me and I wholeheartedly believe that the FCC transparency regulations need to be followed and in place to protect all consumers. patients, legislators, and interested parties.
I have posted each time I did a gig or made a post for someone else. Most of my influencer posts are about clinical trials and the funds raised for clicking on those ads go to the International Pain Foundation. I still will mark them #sponsored #Ad or if I already use the product #OrganicAd so that my followers, friends and anyone in my sphere of influence knows that there was an exchange of some sort. Sometimes it is financial, sometimes it is in-kind. Just in case you were wondering, I have raised just over 6k since 2006. So in my case we are not talking about a lot of funds, and most of it was donated directly to the International Pain Foundation for which I am a volunteer and currently serve in the President position. Still, I am sure you are interested so here is a list of past gigs specifically with WEGO Health and/or all pharmaceutical companies that I done influencer work for in some capacity because that is what I have been asked about. I have also done influencer work for other DME companies, cookie companies, Texas Roadhouse and other similar products that I love.
I joined WEGO Health in 2012. From WEGO Health: Raised a total of $4,007.40 (all time), donated directly to International Pain Foundation (iPain) for which I am a VOLUNTEER. I currently serve as the President of iPain. Raising approximately $250.46 per gig Two of these 16 gigs over the years were pharma related, one directly, one indirectly.
Barby’s WEGO earnings from 2012 to 2019
- Amgen Video for Internal Meeting (pharma: Amgen)
- CME IDB Truvio Study
- CME Opioid Webcast Tiered Influencer Campaign
- Digital Patient Advocacy Trends Survey
- Drug Price Transparency Survey
- HealtheVoices SM Coverage (WEGO Health corespondent, not paid by Janssen)
- Kick Health Migraine Survey
- Live Video for Amino; HC costs
- Patient Leader Video Promo
- Prescription Adherence Blog Article
- SM Master to Promote Patient Advocacy Summit
- WEGO Health Advisory Board
- WEGO Health Migraine Platform Survey
- WEGO Health RA Platform Survey
- XpertDox Provider Search
- Zubia Live-streaming Video
I started advocating on my own in June 2006 and a few companies reached out to me: For a total of 11 events $2,075 between June 2006 and Dec 2019. Raising approximately $188.63 per opportunity.
- I have spoken at 1 Pfizer event for no pay sharing my personal health journey, they paid for my travel to San Francisco. (no medications were discussed)
- Served on the Purdue Patient Advisory Board, they paid for my travel to come to their headquarters 1x and $75 pay for expertise for a year of phone meetings, (no medications were discussed)
- Grünenthal paid my travel fees for 1 trip to New York, 2 trips to Boston, and 1 trip to Mexico City over a 4-year period and $500 total pay, for giving my input on ads and other related materials for a medication that was in clinical trials but didn’t make it to market (non-opioid).
- Janssen has paid for me to attend HealtheVoices the last 4 years of travel costs, I also served on the advisory board 1 year (2018), and they will pay my travel again this year. (no medications were discussed)
- I spoke at 2 private AstraZeneca events and served on the committee for the OIC Superbowl commercial, I did not take any payment for this, although it was offered, but was paid travel to 1x Vegas and 1x Dallas to share my health journey on a panel discussion. (no specific opioid medications were discussed, but Movantik for OIC was), As a person who has a personal story that is quite compelling relating to OIC, this was one of my favorite speaking opportunities. Also as a cheerleader, and former head collegiate D-IA coach who has had the opportunity to coach at the Sun Bowl and 2 Rose Bowl games This was a special opportunity to have two of my life missions (health and cheerleading for sports for more than 1/2 my life) to collide at a Super Bowl game.
I followed FCC guidelines for posting and also disclosed for speaking at each gig, relevant financial interests & information for each gig. I am going to continue to follow all influencer laws and regulations and if you are in influencer, you should be as well. All in all, it hasn’t been very much paid influencer work compared to most KOL’s although I have received a lot of media and attention, because I do advocacy first and foremost to improve access to care for all, including myself.
Hope is True, Barby