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. I posed about this in 2019 but wanted to give another update. 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. 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.
My total earned between 2006-2020 from pharma is $8,232.40. Which comes to an average of $588 per year. For International Pain Foundation (iPain), I am a VOLUNTEER. I currently serve as the President of iPain.
- 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 correspondent, not paid by Janssen)
- HealtheVoices presenter & advisory event committee & Impact Fund
- 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
- Ultragenyx
I started advocating on my own in June 2006 and a few companies reached out to me:
- 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 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 served on a grant advisory board for HealtheVoices Impact Fund (J&J) $1200.
- I served on an advisory panel for Ultragenyx, $800.
- Presenter at HealtheVoices Live $250.
I followed FCC guidelines for posting and 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.
I believe the patient voice should be heard and involved when it comes to all levels of what pharmaceutical companies do. It is interesting when they do not partner you end up with a commercial for incontinence where the woman is jumping on a trampoline. You can tell that company did not collaborate with the patient voice for those who would be affected and need the medication, prior to putting out the commercial out. Please let me know if you have any other questions.
