UPDATED: Calling ALL Mesh Victims! The Anti-Mesh Marketing Campaign Needs Your Help!
September 14, 2014
UPDATED: Below main story September 17, 2014
#CleanUpYourMeshAmericanMedicalSystems
#CleanUpYourMeshBayer
#CleanUpYourMeshBard
#CleanUpYourMeshBostonScientific
#CleanUpYourMeshColoplast
#CleanUpYourMeshJNJ
#CleanUpYourMeshFDA
#CleanUpYour MeshDOJ
#CleanUpYourMeshGovernment Accountability Office
#MediaSilence
Over the last several months I’ve had the privilege to speak with, correspond with and at times cry with victims and advocates trying to get the word out about the problems regarding transvaginal mesh. One thing I did notice is that all the stories are similar regardless of the maker of the device. And the other story that’s similar is that the companies are putting their #PRSpin on facts to justify the selling of the harmful device by putting profits before patients. Bayer and Johnson & Johnson are two easily cited examples but with #PRSPinUnSpun more facts than fiction are provided to help readers who may not know anyone hurt by mesh to understand what it’s doing to these women (and men, yes there are also men affected by mesh).
Some of the feedback I heard was that Johnson & Johnson gets more attention than the other companies in the media. In part they sold more devices; but, they’re still not getting enough media attention which means the other companies are getting even less. (Bayer, Bard, BostonScientific, American Medical Systems, and Coloplast0). I was also given some unlikely advice from an unlikely source that there are many companies that operate from a position of fraud and that I should branch out when it comes to fraud. That unlikely source may not be so happy that this campaign also includes accountability from the government: The FDA, TheDOJ, and the Government Accountability Office.
If you’ve read the “About” section of this site then you know I was wrongfully terminated from Johnson & Johnson. You’ll also know that is no longer “my” story as it’s “our” story. You’ll also see that I made at very good living working from Johnson & Johnson’s subsidiary Ethicon’s subsidiary Acclarent.
I state this to add context to my ability to successfully create a marketing campaign and when need be (which is now) the anti-marketing campaign. While at Acclarent, I was a rep for products known as Balloon Sinuplasty and the Stratus Microflow Spacer. I was also the only rep in the company who earned the privilege of creating a beta marketing test and provided a marketing intern for the course of the beta test. Much of the data obtained from the beta test I created was then rolled into another marketing program at Johnson & Johnson that’s still used nationally today.
And with that, the focus needs to encompass all the mesh victims and not just Johnson & Johnson’s. As with any good marketing campaign there needs to be a solid approach and with any good anti-marketing campaign there also needs to include #ForcedAccountability. I will say this was initially a little counter-intuitive ; but, quickly applying feedback and tweaking on the fly is part of what successful marketing is about. And now for the Anti-Mesh Marketing Campaign:
1 Uniting all mesh victims for greater media impact
#CleanUpYourMesh
2 Individual company accountability piece
#CleanUpYourMeshBard (if you’re a Bard victim)
#Clean Up YourMeshBayer (if you’re a Bayer victim)
#CleanUpYourMeshBostonScientific (if you’re a BostonScientific victim)
#CleanUpYourMeshJNJ (if you’re a Johnson & Johnson victim-JNJ is stock symbol-added bonus)
#CleanUpYour…should be the first thing in any tweet, social media post, or blog posting (with no spaces)
3 Goverment accountability piece
#CleanUpYourMeshFDA
and this should be the second line of any tweet, social media post or blog posting (along with whatever link you want to your specific topic of the week (FDA Recall) or (Vicitm Story) etc.
Again, this Anti-Mesh Marketing Campaign only works if every memeber of every mesh group gets behind the campaign and does it exactly the same (no deviation) and that’s not ego talking it’s about:
creating awareness to the main cause (mesh) and attaching accountability (to the specific company)
creating awareness to the main cause (mesh) and attaching accountability (to the government)
Examples:
If every mesh victim tweeted this just once a day (or say 60 times a day) then
the companies and FDA would have a tougher time ignoring the victims!
When typed into to the Twitter bar we just see me now-but we need everyone to #GetActive…
Wouldn’t it be great to have ALL the mesh companies and FDA trending on Twitter???
And help others by re-tweeting
And remember to link it back to petitions or boycotts
Awareness without action will fall flat.
Think about “Bring back our Girls” campaign vs. ALS Ice Bucket Challenge
one was tied to an action and much more successful
Note #’s are the first thing (this is an important step)
The FDA doesn’t think we can all work together and the companies don’t think we can all work together. Ladies (and gentlemen) let’s show them who they’re dealing with and #GetActive (People should never underestimate what a group of really pissed off injured woman can do!)
*If I’ve missed a mesh company in the list please (forgive me) and email me melaynalokosky@gmail.com Thanks!
And to those who may skeptically (and rightfully ask) what do I get out of of helping women when I’m not injured by mesh?
First I get to help a group of victims organize with #ForcedAccountability towards unethical companies and the government to try and create positive change.
Second, I am writing two books which expose corporate corruption and teach victims how with #ForcedAccountability they can protect themselves.
Third, when (not if-I have faith) this campaign is successful-I’d like to include this in the books as a way to teach other victims how not feel hopeless by a broken system.
UPDATED: September 17, 2014
For additional information regarding properly targeting for the Anti-Mesh Marketing Campaign
I’m sure Bayer visits the other sites often, this was a first for this page; and, I can no longer “tag” @Bayer in the pictures on Twitter. The beginning or #ForcedAccountabilityBayer? The ladies of Essure set it up Twitter Party but it’s great to get all mesh victims active this weekend to support each other while you make the individual company accountable. Remember to attach an action item to each tweet for greater impact (back to petitions, change.org, buycott campaigns, information, etc.). Anyone who needs help with tweeting please send me the links you’d like to have sent out on your organizations behalf. At the end of the day, I cannot fight with the people I am fighting for-you don’t have to agree with my methods or even like 100% of what I write-I am here to fight for all of you and not with you.
For those who refuse to recognize the difference, this is bigger than any one person’s problem or ego it is a collective problem of an industry that’s been allowed to run corrupt and kill children, harm women and reward executives for their illegal behavior. This is not just a mesh problem it is an industry world-wide problem. This site created a “# campaign” YOU ALL HAVE GIVEN IT A VOICE!
Tomorrow:
Each mesh group should reach out to at least one another organization to strengthen your voice to help tweet: Any Mom Blog or Consumer Blogs specific to your target company is a great choice. Mesh victims think about the consumer products your mesh company makes and target sites that also have a problem with the parent company.
Examples:
Bayer on the Buycott site there is an anti Bayer campaign that has over 349,000 people. Check to see if they’ll add your campaign to theirs for greater reach.
JNJ Consumer goods Safe Cosmetic may offer to help since they had a campaign against JNJ during the cancer causing agents in baby products. Buycott site has 26,000 people signed up under an Anti-JNJ campaign (which I started and already added a section to get people to join the twitter campaign this weekend).
I’ll keep working to find the other mesh makers and add them (keep checking back)!
If anyone has other information to add please email me.
Also start working on your media releases that should go out Friday morning if you need help just let me know!
John
Take it to the Government Accountability Office too!
Melayna Lokosky
Great advice John-thanks for the feedback-I’ll add it to the site’s pages.
Diane Schuricht
The anger that I feel inside has consumed my life. J&J knew that the mesh was defective when I had my implant in 2006. Had they done the right thing and pulled it from the market, I would’t be in the position that I am. I have a massive infection that I can’t get rid of. The pain is overwhelming at times. I have lost the intimacy in my life and I am lonely and depressed. I get so angry at times and I would like to be face to face with the person that is responsible and ask them why? Why would J&J and Alex Gorsky knowingly bring so much devastation to so many lives. This is a medical holocaust brought on by corporate greed. Alex Gorsky and J&J along with the FDA and our government are murderers. Legal genocide, a way to secretly kill thousands while they make money, how clever. Gorsky and his counter parts should be in jail. Obama needs to be investigated as to his part in this global catastrophe. Why is the President and the First Lady not addressing this issue and force action and responsibility. Why do they ignore the pain and suffering of thousands? Did their pockets get fat in the killing fields? How can greed take control and cause these people to not care about human lives? Bottom line “MESH KILLS” the mesh device is defective. How can Alex Gorsky and J&J/Ethicon appeal the verdicts of the victims of corporate greed. Step down Gorsky, go to jail…..do not pass go….go directly to jail. I will not allow Gorsky and J&J put a price on my life…I believe in Karma, Mr. Dorksky, you should be looking over your shoulder because Karma is going to come and bite you on 60% of your ass. I also pray every night that you are mugged and left without the use of your penis and legs..that you suffer like the many that you have harmed. I hope your house burns to the ground. I wish that your wife leaves you to find a man with honor and compassion for human lives. Can’t see how she could be proud to be married to a murderer. You have sold your soul for the all american dollar. Burn in hell Gorsky I hope your life is a living hell like the thousands of lives you destroyed by blind greed. Have a very bad day, Dorksky.
Diane Schuricht
Melayna Lokosky
Diane-There are no words to express how sorry I am for what you’re going through. The losses you’ve (and many women like you) have endured are unspeakable. I agree there really needs to be public awareness. I’d like to know where Eric Holder from the DOJ is while all this is going on; but, he just likes to be there to collect the giant checks but never puts any of these criminals in jail. I’ve often said I worked with and for felons (they just weren’t convicted yet).
What many in the public don’t understand (and the mesh community is misinformed that the public is aware) is that mesh victims are not millionaires despite huge settlements, that the cases are still on going and the problem isn’t going away, in fact it’s getting worse. While the ice bucket challenge was great (awareness + action) there are many other victims that need help and mesh is not getting the media’s attention. (In part why I think Erin Brockovich is hurting all mesh victims by not being more vocal). People see the law firm ads on tv but don’t know that this is still a very real problem.
I’m with you- I think #JNJCeoAlexGorskyBannedForLife from the medical industry would be a great start!!! It angers me that #SherriWoodruff the JNJ spokesperson still totes mesh as “the gold standard” not only isn’t it the gold standard, just because a company says it is does not make it so. Stay strong Diane and come by and vent anytime!
Jane Akre
Thank you for being a leader Melayna! Your efforts are appreciated. This weekend! Join in.
Melayna Lokosky
Thanks Jane! Please let me know what I can do to help. I’ve got press releases going out in the morning or if there are any images you’d like to me to create (Twitter data shows there’s greater impact with images attached).
Nicole
I have emailed the White House, the FDA, and Todd Rokita the Congressman in my district. I did get a general email response from Todd Rokita about Transvaginal mesh issues set before Congress but who knows if that’s true. I do know this: I am a 36 year old Mommie to 4 and married with a Small Business in a small town. I’ve tried to keep all the horrific things happening to my body a secret but it has become impossible. And the worst part is that I am alone in thsee last days of my miserable existence. I look at my 4 year old and tear up when thinking I won’t be around to see him graduate. Same for my 6 and 8 year olds. I won’t be able to watch my beautiful daughter have children of her own. I won’t be able to sit in a rocking chair on a front porch and watch my grandchildren play. I don’t have a future. And no one cares because I don’t complain about sitting on the toliet for hours trying to urinate or the pain like something out of a Horror film. No doctor will touch me. My husband makes fun of me. But guess what I do and I’m certain most other women do the same. Smile through the pain and live each day like it’s my last. I now call my vagina the robogyna. Seems fitting in my case. Take care!
Melayna Lokosky
Nicole-I am so sorry for what you and all those suffering from mesh have had to and continue to endure. This is truly a war where patients are fighting the FDA and the device companies. This problem will only continue to get worse as mesh was used in thousands of hernia repairs annually and will start to degrade and migrate as it has in the pelvic region. I wish I knew what it would take to wake the FDA up and pull all the polys from the market. You are a hero to victims everywhere and to your children. Thank you for taking the time to read and comment.
Nanci scherer
Nicole, I feel your pain and anger. I feel every word and understand it. I want to scream to the whole world how pissed off I am. I live in az where do you live if you ever need somebody to vent to I am your mesh sister.
Krnda Parker
I want to fight this but how. It has taken everything. We moved 3000 miles from home to get help from family. Now I can’t get back to my children. No money no car, nothing. I can’t even afford feminine necessities. I need to be with myfamily. No support I have no one to turn to. I feel like a loser and. A worthless mother. Why continue this life? Coloplast u suck…not only was I fighting PKD now this mesh has made it all worse. Somedays I can’t even walk. I can’t find help anywhere. I’m so blown by all of this. We got to make this more aware. Any ideas against coloplast please let me know.
Melayna Lokosky
I’m truly sorry to hear all that you and you’re family have gone through and continue to go through as a result of an implant that was supposed to make your life better, not worse. The device companies would rather victims remain alone and helpless; and, all the mesh (poly) victims working together under one united message (regardless of the maker of the device) to create pressure on the media to cover these stories is the key to getting mass exposure where the truth of the companies will hurt their image and in turn profits=positive change. There are several groups on Facebook and the internet that are starting to work together (regardless of the maker of the device) for the common goal of exposure to the masses and I’d be happy to pass that information along to you or your email to them whichever you prefer. I understand many of the victims are in extreme pain and have limited mobility but the worst thing you can do is remain alone and without the help and aid of others including a psychologist (if you are on Medicaid-please reach out to a professional to help you process all the changes in your life) and the support groups can offer help with obtaining surgeons for explanting or attorneys if you should need. Stay strong and keep fighting! You matter and what you’re going through matters.