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They came from as far away as Portland, Oregon and Tyler, Texas.
The Chicago weather dropped to the 40’s as a group of about ten women braced themselves against the cold Chicago morning.
They were there to counter protest the messages of AUGS. The American Urogynecologic Society’s annual meeting (October 9-13,2018) is a gathering for those doctors practicing Female Pelvic Medicine and Reconstructive Surgery.
Here is the program.
AUGS members, about 1,900 urogynecologists, largely promote the use of polypropylene (PP) mesh as a treatment for stress urinary incontinence (SUI) and pelvic floor prolapse (POP).
The women had another message - Mesh Destroys Lives - accompanied by a mesh voodoo doll, banner and shouting from the street to those driving or walking by to the conference inside the Hyatt.
They should know. All nine protesters claim they are sick from their PP mesh implants promoted by AUGS members as a treatment for incontinence and pelvic floor problems.
That didn’t stop Barbara Lynn Melling, who came from Portland, Oregon. The pain from the grueling plane ride had her lying down in the coach seat as much as possible.
“Even if I die, I’m fighting for all these people who aren’t getting help,” said the small, frail woman.
The women were braced for the bitter reaction from the medical society and its 1,900 urogynecologists.
One doctor came by to talk. He was a supporter of the mesh rally message. Another doctor told Dawn Rasmus-Brown she looked too good to be injured.
You are only a small group that is affected, one doctor said. He insisted mesh does not move.
"You look fine. You're out here standing," the doctor told Dawn.
"Looks can be deceiving," she told him. "I'll be in bed rest for the next three days after this rally," she told him.
He insisted she was wrong.
Exasperated, she walked away.
Mesh News Desk's editor joined AUGS in 2016 and attended its annual meeting, Pelvic Floor Disorders (PFD) Week in Denver. It offered a full day of scientific presentations along with one day of surgical and clinical workshops.
Then president Douglass Hale, M.D. called out the “anti-mesh” movement blaming the injured and trial lawyers for eliminating “tools” in a physicians’ toolbox, used to treat incontinence and pelvic floor collapse.
In reality, the medical device industry, facing heat from huge jury verdicts, saw the writing on the wall and quietly removed a few of the more problematic products from the market.
Not an official recall, a quiet removal gives industry the option to reintroduce a similar device after a few tweaks.
There is generally no patient presence at AUGS, but there is always a great trade show on the floor with the latest “innovative” medical devices promoted such as those from Boston Scientific, Coloplast, Allergan, Ethicon, Bard, Cook Medical, Medtronic, Caldera, among others. This year 166 sponsors provided about half of the budget for the gathering.
Industry sponsored 44% of the support for the PFD Research Foundation, according of the organizations 2017 annual report.
It pays to advertise.
AUGS says (here) says “More than 60% of meeting attendees said that they rely on the products and services displayed in the exhibit hall to incorporate into their practice. Nearly 75% of attendees approve or influence purchases in their work environments.”
There was no patient presence at AUGS 2016. Even a scheduled mock trial, that would have informed doctors about the issues being raised in defective product litigation, was cancelled at the last minute.
This year would be a bit different.
Four women had arranged to meet with four members of AUGS - President Charles R. Rardin, M.D. was there, so was Geoffrey Cundiff, M.D., a urogynecologist from Canada, along with Elisa Trowbridge, MD and another female doctor.
They were escorted by the AUGS nonprofit CEO, Michelle Zinnert, shortly after 6 pm into a back room at the Hyatt Regency.
Each of the four women present, Regina, Katrina, Nancy, and Robin took about two minutes to tell her story, truncating years of mesh complications, removals, pain, and what the new normal their life had become.
Regina Holcomb used to be a private investigator. She knows how to size up people.
Of one doctor, she says, “He seemed compassionate to the cause, like it was eye opening to him, she says. The head of AUGS appeared disinterested.
“He kept a smug grin the entire time, there was no visual sign of compassion at all.”
Their message was simple.
Mindful not to be combative to the very doctors who still call incontinence mesh the Gold Standard, instead they asked for help.
Regina Holcomb told MND, “I would say two things - We are living with mesh and we are all looking for help. We brought up the fact that you train people to put this in, but have you started training to take it out?”
“I said if this had been a car, it would be recalled and they would fix the issue. These are our bodies what are you doing to help us!”
They said they are doing research but never would say what kind of research. They just kept saying working on research, she says.
Katrina Spradley drove in from Wisconsin.
“They said we have doctors, but never gave us names.”
Her new nonprofit is about to launch its website, www.meshvictimsunited.org as a gathering place for ALL mesh injuries, including men and hernia mesh. As part of its talking points, Katrina asked the doctors if there was a procedural code for mesh injuries.
”How can any of the reports out there be accurate when you don’t know how many revisions are made?” she asked. “When it’s eroding you put another mesh on top of it.”
AUGS members talked about a device registry to get an accurate handle on injuries but at the current time it does not exist.
The FDA’s medical device registry (MAUDE) is full of regulatory jargon making it nearly impossible for the layman to access or file a complication report. Add to that, reporting is not mandatory and any complication report must first pass through the manufacturer. More often than not, they reject the complication as a result of the device.
The General Accounting Office (GAO) in 1986 (here) found 99 percent of the problems associated with medical devices surveyed in hospitals had not been reported to the FDA.
Have things improved since then? Not really. It is easier to find a car to recall via its #VIN number than a faulty medical device, according to Madris Tomes of Device Events, who used to work at the FDA.
After the meeting, Regina says, the woman at the gathering came back and apologized for what she was going through.
Nancy Gretzinger had hoped to share her book, with AUGS membership but was told not to hand it out in the Hyatt lobby.
Meanwhile out in the street, Barbara asked one doctor, why industry is spending money on lawyers instead of using those dollars to help women.
For most, the powerful feeling came from the gathering of mesh sisters.
“Being able to talk, understanding what’s going on, emphasizing. You see their names on Facebook and you don’t know who they are,” said Nancy. "Now you do"
They ate spaghetti and salad made by Katrina’s husband, Terry, and shared a condo to keep costs down.
The rally had some media attentions- a WBBM radio reporter was there. So was a journalism student from Northwestern University who vowed to do more stories.
They handed out pamphlets with mesh information and talking points from a newly formed 501 (c) (3) charitable organization started by Katrina.
She is learning WordPress, and doing the work herself creating www.meshvictimsunited.org. The nonprofit will have a board of about 13 women, all mesh injured and hopes to push for registries, coding, and more awareness so future generations don’t meet the fate of these women.
The money for tee-shirts and pamphlets was donated.
Almost as if on cue, Boston Scientific has just launched its new website to promote treatments, mesh among them, for incontinence and pelvic organ prolapse. See Choose You here.
The small group of women vow this will not be their last visit to AUGS.
Next year it will be held in Nashville, TN September 24-28, 2019, and in Vancouver, Canada PFD Week 2020 will be October 6-10.
Whether negative or positive feedback, “at least we were visible,” Holcomb concluded. ##
This is Part One, Part Two, The Doctors: AUGS Today is in production.
