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AUGS Prolapse Consensus Conference Announced with Patient Advocates

logoMesh Medical Device News Desk, October 16, 2016 ~ AUGS Prolapse Consensus Conference Announced. Patient Advocates work with industry for change.

The AUGS 2016 Prolapse Consensus Conference will be held November 10-11, 2016 in Baltimore, MD to “bring together thought leaders representing private and public stakeholders who are actively engaged in prolapse treatment and research to identify the current, critical steps required for improving treatment and reducing the impact of prolapse on women’s lives.”

Scientists and clinicians actively engaged in research or in the practice of women with pelvic floor disorders are invited to attend.  Stakeholders are invited too.  Who are stakeholders?

womens-health-foundation

Identified as the Stakeholders are:

*AUGS Investigators/researchers

*Funding Agencies

*Industry partners

*Patient Advocacy groups

 

Attendees will have an opportunity to help shape the future action plan by participating in working group sessions.

Who are the patient advocacy groups?

missy-lavender-womens-health-foundation

Missy Lavendar

Patient represents include Missy Lavender and Sherrie Palm, and their nonprofit organizations.

Former businesswoman, Lavender is the Executive Director of the Chicago-based Women’s Health Foundation whose mission is to improve women’s pelvic health and wellness by, “Driving cutting-edge research initiatives,” as well as develop education and fitness programs and serve as a national resource on pelvic wellness.

The group was formed in 2004 after Ms. Lavender experienced POP, incontinence and sexual health issues.  And soon afterward the organization shifted from information around specific dysfunction to a focus of pelvic health “Below the Belt,” as they describe it, “now embraced by industry as a goal for women and girls.”

The  group recently partnered with HealthyWomen on a project which is supported by a corporate advisory board and Pfizer, Allergan, Poise, the Divacup, Osphena pill to treat dyspareunia made by Shionogi Inc. a Japanese drugmaker.   See the Corporate Advisory Board.

Sherrie Palm, based in Wisconsin, runs the nonprofit, APOPS Association for Pelvic Organ Prolapse. Filed as a nonprofit corporation with the state of Wisconsin in September 2010, her website provides information about POP and links to health professional members of AUGS.  She became an AUGS member in September 2012.  Palm continues to support and promote surgical mesh telling that surgery without mesh often fails in one to five years. 

On her website she thanks sponsors Coloplast, Boston Scientific,  Thermi, Laborie, MD Custom RX, Incontrol, A Women’s Touch

Here is the APOPS page on mesh.  APOPS on Questions to ask your doctor about POP mesh repair.

Sherrie Palm , APOPS

Sherrie Palm , APOPS

Her organization is for women who have been diagnosed with pelvic organ prolapse or suspect they are experiencing the symptoms.  She advocates surgery as one option for women, the one she chose to find relief.

Palm believes industry is part of the solution, which she calls “building bridges.” apops-building-bridges

You can contact her for her fee schedule. She appears in this YouTube video. 

She writes on October 12, 2016 in her blog:

“Last week I returned to home base following Astellas/AUA/Urology Care Foundation sponsored advocacy coalition round table in Baltimore. Advocacy coming together to generate positive change in policy is a good thing, especially when healthcare, industry, research, and academia participate in the process. Healthcare policy evolves slowly when one sector alone bangs the drum; it advances more effectively when voices from all sectors come together in a way that acknowledges patient voice is the cornerstone. If you want to know what the true impact of any condition is, ask the patient.”

 

AUGS Prolapse Consensus Conference

November 10, 11, 2016

Hilton Baltimore

401 West Pratt Street

Baltimore. MD

Here is the announcement
http://www.augs.org/p/cm/ld/fid=824

 

 

21 Comments

  1. Janis Urban says:

    Good for Sherrie! Poster Woman for the Mesh Industry and the Quacks that Implant Mesh! Wow! Advocacy? My guess? Sherrie is making a good living promoting the use of Mesh? Based solely on her own experience! She should be advocating for the Women who have been Injured! Pressing Industry and Doctors to establish a Non-Biased Standard of Care Policy for the Complications. It is imperative that the Injured be included in any discussion of Guidelines and Standard of Care for All the Complications of Mesh. Another closed door with this organization. True Advocacy doesn’t promote the use of Risky Devices that have been reclassified! Instead, it should Advocate for changes in the Regulations that place these Untested Devices on the Markets. And Always places All Women’s safety first, working towards Improving and Solving the Serious Issues of these Products with Congress, Industry, Doctors, and the Medical Community!

    • Jane Akre says:

      Jan- You make some good points, those with industry ties are heard loudly, however, read her website., she promotes hearing ALL Voices…. see if she will listen to you and others from the injured patient perspective?

      • Nonie W says:

        Sherry Palm has blocked the voices that wish to disagree that surgery for prolapse is best done with mesh. To my knowledge she has not relayed the concerns and experiences of mesh injured women to her group. At best, one might surmise if you agree with her you may stay in her group. Sorry Ms. Palm but you do not represent or speak up for the mesh injured. Ms. Palm does all of us who have researched MESH INJURY, and advocated for limited and judicious use of mesh, a great disservice.

        • Jane Akre says:

          It would be interested to see if en masse women tried to join her organization what the response would be?
          It is also not surprising that when industry infiltrates a nonprofit, it is good for them (tax write-off) and good for the head of the organization.

          • Lisa says:

            I would contact her Jan and see what she has to say. If she truly “promotes hearing ALL Voices…. ” including from the injured patient perspective? Its an expensive risk, be sure to get a commitment from Ms. Palm that you’ll be heard. According to the schedule, there isn’t a platform for patients to be heard from.

          • Jan B says:

            Many of our support group members have tried to join the APOPS Facebook support group. APOPS admins have sent a message to prospective members saying that if they are in an “anti-mesh” group they can’t join APOPS. We’ve also had many members who said they were booted from the APOPS group after they had mesh surgery that did not have a good outcome. If they speak up and say they had a negative outcome, they’re removed from the group. There is no discussion allowed from the perspective of mesh injured women. This horrifies me. Because Ms. Palm is held up as a “patient advocate” yet she is not advocating at all for patients who are severely injured by a mesh POP or SUI repair. It is impossible to believe that she or other AUGS members are unbiased, because they are financially tied to the mesh manufacturers. Whereas those of us advocating for mesh-injured women are tied to NO ONE financially – we have no reason to speak up about mesh, other than to warn others that it severely harmed us.

          • Jane Akre says:

            Thank you for your personal perspective. That is indeed horrifying from a person who says she listens to “all voices,” nevertheless what if a new wave of folks tried to join? If you’ve had an experience please share here…..

  2. Evy says:

    I wonder if I can go even if I’m waiting for an offer packet to come? I live 7 miles from Baltimore.

    • Still says:

      Evy, please ask your attorney who is handling your settlement if they think you should or should not go. You are at a difficult place if you have indeed been offered a settlement. It may be that you get their advice and decide to go no matter what. That is your right, but it is important to let your attorney know anything that you do that could impact your case until your accept or refuse the settlement offer. Just keep them informed.

  3. Kitty says:

    You can go..wear a clown mask or something… this is huge!

  4. mary b says:

    Thank you again Jane for letting us know what’s going on that woman scares me for this must be for her benefit it sure is not for the many women that was severely injured by mesh and hope the future women understands this

  5. Still Standing says:

    Nonie, i have spent some time looking at the APOPS website and Information about Sherrie Palm. After taking an unbiased look, I must say there are more than a few things that concern me. 1. Sherrie has posted a very pro-mesh article regarding transvaginal mesh for POP, telling how wonderful her repair has been. Since hers was done the same year mine was done and since that time even the FDA has recommended that transvaginal mesh for POP is dangerous, I find that post is not in ANY woman’s best interest. 2. She apparently has no qualifications to have the prestigious patient advocacy voice that she has other than being a woman with POP. She did get physical therapy assistant certification, but that is it. 3. This may be picky, but she has no understanding of when to use punctuation marks, especially periods, colons and semicolons. If you are going to be a professional patient advocate with a website, make sure the website is professional. 4. Under the POP information tab, mesh questions to ask your doctor, she details 14 questions to ask about mesh. None ask the physician what his/her complication rate from mesh surgery is. That is stunning to me. 5. She received grant money from the Toledo Community Foundation to develop and sell branded merchandise, which, in itself is not bad. But there is nowhere on the site that details the financial stewardship of the organization. As an individual who has run many 501(c)(3) organizations, this is always a red flag to me. I will do some more digging on that one. It does appear at this point that she does not present any perspective of the mesh injured woman, which is definitely skewed and non-inclusive.

  6. Kitty says:

    Just read miss suzy’s take. Her position screams “I’m in love with my Dr–and he loves me too.” Her writings are problematic as SS stated. The questions—she tells us to ask are superficial and redundant. Why not ask “I have heard that bio mesh sometimes fails and just disintigrates–where does it go?” OR…..”I have heard that the mesh grows into the organ by the process of scar tissue…but then I heard scar tisue can cause adhesions and terrible pain. How can I prevent this? “.OR….”Should I have Intercourse frequently to prevent the mesh from shrinking?—what if I don’t have sex for long periods of time? Should I use A Dildo to keep up the pliability?” “What if I am not sexually active?” SS..please excuse my use of punctuation. SUZY should not start a sentence with However.
    .

  7. Kitty says:

    Please excuse previous mis take of calling the MSs’ Palm and Lavender …”SUZY” I was caught up in the aromatherapy of their names. Luv u all Kitty

  8. Disgusted says:

    I feel we are under an avalanche of those who have. I’m sorry, but it wouldn’t even surprise me if she gets kick backs from the pharmaceutical organizations. How can she claim to be a patient advocate and not be even willing to hear from the injured. That we are continually kept out of studies and input into the ways things are done in our country is appalling.

    • Still Standing says:

      Coloplast and Boston Scientific , among others, underwrote her APOPS conference this year. Remember, this is her organization, so it would be a safe assumption to say that she benefitted financially. I dont know if that helps pay her salary from her work in her organization since there are no financials posted. Her tax filing last year ( you can check the tax reports of all 501(c)(3) agencies through the IRS) showed no income, no assets so I dont know where sponsorship dollars end up. I need to dig around more about that. I imagine that she gets a salary, but i have not confirmed that by actual fact. It could be that she takes no salary. I did go back and revisit the website and it is definitely pro-mesh. Makes me sick that women who are weighing mesh surgery who happen to find that site may walk down the yelliw mesh road. Here is a great story. Two years ago, a friend of mine scheduled bladder surgery for SUI with a fairly young and inexperienced gynecologist who recommended surgery without even doing any urodynamic testing. I begged her to see my doctor. He told her to quit drinking so much fluids, did three in office laser treatments and sent her to pelvic floor physical therapy. She saw him today and has absolutely NO leaking. He said if she stays vigilant about her self care that she may not ever require any other treatment. To think she could have been two year post surgery and in my same shoes. Just a sick thought that every day new women are implanted.

  9. Barbara says:

    She Sherry should be fired for helping to endanger the lives of many women!
    It is time for this mid evil practice to stop! And those responsible tack accountability and deal with the many injured and count those that have died!
    This women should have to hear the story’s from us every day of her life till she sees the damage and horrific pain we endure day to day.

    • Still Standing says:

      She can’t be fired. She is the founder and director of the APOPS organization. However, unless she represents all sides of mesh surgery, she should not claim to represent all women with prolapse. It is reckless considering the documented serious injuries from mesh. I do think, however, that AUGS should reconsider giving her a platform to speak on our behalf. Really??

  10. Barbara says:

    I would go if I knew all there would hear our say and I was with other
    Mesh advocates

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