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Policy on Treatment versus Management of Endometriosis and Pharmaceutical Industry Interaction

The needs of all people with endometriosis, their families and caretakers are at the heart of all that we do at Endometriosis Foundation of America (EndoFound). We are committed to serving people with endometriosis through awareness, advocacy, research and education while maintaining our values of integrity, transparency and compliance.

Policy on Treatment versus Management of Endometriosis

  • This Policy on Treatment versus Management of Endometriosis is informed by the most recent medical science as well as scientists and physicians who are affiliated with our organization.
  • Endometriosis Foundation of America (EndoFound) supports timely diagnosis and precision excision surgery only as the primary treatment for endometriosis.
  • EndoFound recognizes short-term pharmaceutical management of the symptoms of endometriosis in individuals by some practitioners in extreme cases preoperatively or in patients without access to surgery.
  • EndoFound disavows any individual, group or organization that intentionally or unintentionally degrades the value of timely diagnosis and treatment by excision surgery over any other treatment or management of endometriosis.
  • EndoFound supports all patients regardless of the treatment and/or management decisions they make individually and/or with their physicians and condemns in no uncertain terms attempts by any individual, group or organization to unduly influence or interfere in any way with the sacred doctor-patient relationship or the patient’s autonomy to make their own healthcare choices.

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EndoFound recognizes the important role pharmaceutical companies play in research and development for the management of symptoms of endometriosis. To ensure objectivity and avoid undue influence and potential conflicts of interest, we have created the following policies and practices which govern all aspects of our interactions with the pharmaceutical industry (Industry). These affirm our commitment to our community and maintenance of our uncompromising ethical standards.

Policies and Practices Regarding Pharmaceutical Industry Interaction

  • EndoFound neither relies upon nor is influenced in any way by funding from Industry in formulating its policies, carrying out its practices or in developing and delivering its awareness, advocacy, research and education programs and services.
  • EndoFound disavows any individual, group or organization that intentionally or unintentionally degrades the value of timely diagnosis and treatment by excision surgery over any other treatment or management of endometriosis.
  • A committee of the Board of Directors monitors current, as well as newly proposed, categories of Industry interactions for potential conflicts of interest and compliance with applicable regulations.
  • Stringent conflict of interest policies are in place for EndoFound employees, officers, and board members as well as for its Scientific Advisory Committees:
    • Members of the EndoFound Board of Directors and Scientific Advisory Committee are required to periodically disclose business relationships that they (or a family member) maintain with organizations that do business with EndoFound or that could otherwise potentially affect his or her independent, unbiased judgment and, if applicable, recuse themselves from matters where their judgment could be compromised. As part of the disclosure process, members must provide detailed financial information regarding existing or potential investments in Industry companies as well as any consulting fees or honoraria. 
    • Employees, consultants, or directors of biotechnology and pharmaceutical companies where a material focus is on endometriosis, may not serve in a voting capacity on the Board of Directors.
    • Employees are prohibited from receiving any compensation, personal reimbursement, or gifts from Industry (nominal meals during business meetings are acceptable). When speaking at events where Industry is also present, EndoFound employees must make clear they are representing EndoFound and include any applicable disclosures.
  • Research projects funded through EndoFound are reviewed by a committee of scientific experts comprised of members of the Board of Directors and Scientific Advisory Committee in accordance with established policies and guidelines to ensure they advance EndoFound’s mission.
  • When providing a research award, EndoFound ensures that it continues to comply with private benefit doctrine under section 501 of the Internal Revenue Code, which requires serving public rather than private interests. EndoFound accomplishes this by only funding research that will further its mission and under no circumstances research conducted by Industry.
  • Industry representatives are prohibited from participating on the Scientific Advisory Committee or on any individual guideline review committee. 
  • EndoFound does not endorse or recommend the products, processes, or services of any Industry company or entity:
    • EndoFound has instituted policies to ensure its website provides unbiased information regarding treatment and management of endometriosis with the goal of informing people with endometriosis about their care options and facilitating more productive care discussions with their endometriosis care providers. For example, EndoFound does not post or link to Industry-generated content about specific products. 
    • EndoFound does not accept support from Industry for the development of educational materials or include advertising or content from Industry on our website.
    • EndoFound does not provide its mailing or email lists to any corporate supporter, including Industry organizations. Further, EndoFound does not use its mailing or email lists for Industry programs.
    • EndoFound does not assist in research undertaken by Industry organizations (e.g., recruitment of participants for clinical trials). 
  • EndoFound does not solicit or accept Industry support for advocacy efforts, educational materials, volunteer conferences, medical/scientific grants, or internal research.
  • EndoFound may accept Industry support through our fundraising efforts, including fundraising events (e.g., Blossom Ball, Medical Conference and Patient Day) in accordance with the following:
    • Company or product exclusivity at special events is not permitted. 
    • Special event names may not include the name of an Industry company. 
    • Sponsorship opportunities and benefits, including acknowledgment, are consistent between all corporate and individual supporters, including Industry, and are executed at arm’s length. No benefits are granted to Industry outside of those formally offered. 
    • Sponsors may be granted the right to use the EndoFound name and/or logo in connection with their support of a specific EndoFound activity with appropriate permissions and disclosures regarding EndoFound Policy on Treatment versus Management of Endometriosis and Pharmaceutical Industry Interaction.
  • EndoFound sponsors, including Industry sponsors, are prohibited from engaging in the following activities during EndoFound events, including but not limited to:
    • Recruiting participants for clinical trials. 
    • Conducting surveys or collecting the names and information of event attendees.