Putting Thoughts Into Action

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According to Merriam Webster, the word revolution can be defined as "a fundamental change in the way of thinking about something."  20th century activist, Emma Goldman, believed that when powerful thoughts become actions, the revolution is brought to life and that is when change happens! The team at Endo What? has been working hard behind the scenes, collaborating with those yearning for change, to revolutionize endometriosis care for the 176 million individuals suffering. 

Our founder, Shannon Cohn, has been busy in the editing room after completing the filming for her next endometriosis documentary! This film will focus on the social justice impact of endometriosis care and will take a discerning look at all of the institutional obstacles to care through the eyes of patient advocates. Here is Shannon filming Jenneh Bockari, an incredible advocate living in Los Angeles and the co-founder of The Endometriosis Coalition. 

 Follow Jenneh on Instagram at lifeabove_endo for endometriosis support and care. 

Follow Jenneh on Instagram at lifeabove_endo for endometriosis support and care. 

Casey Berna, our Director of Programs and Partnerships, along with longtime advocate and Advisory Council Member, Heather Guidone, recently went to Burlington, Vermont to partake in the ICER review of Abbvie's new drug Elagolix, which is intended to be used for endometriosis treatment. The panel's task was to assess the clinical and economic value of the upcoming oral GnRH antagonist. Patient representatives warned that more research is needed to fully assess the side effects of this drug before it is distributed to the masses and that both patients and providers need more access to referrals to specialists and multidisciplinary care.  After hearing all of the evidence and the comments made by patient advocates, the panel voted that at this time Elagolix is not a clinical or economic asset to endometriosis patients. 

This assessment is so important and relevant as the US Food and Drug Administration (FDA) has just granted approval to AbbVie and Neurocrine Biosciences, Inc.’s elagolix (Orilissa) despite concerns by patient advocates and clinicians alike.  

 

 The serenity of Burlington, Vermont juxtaposed with the often heated debate between advocates and clinicians over potential role of Elagolix at nearby ICER meeting. 

The serenity of Burlington, Vermont juxtaposed with the often heated debate between advocates and clinicians over potential role of Elagolix at nearby ICER meeting. 

 

We are working hard to identify and have conversations with key stakeholders that can help revolutionize care for girls and women with endometriosis. We had an incredible conversation with an emergency room physician whose sister has endometriosis. This provider recognizes the need to change how endometriosis is treated in the emergency room and we are working together to figure out how to get more resources to patients and providers in this field of medicine. We also have been contacting and speaking with state school nurse leaders from across the country. We talked with one school nurse state consultant who has endometriosis and who is invested in working with us so that school nurses in her state can identify endometriosis early and provide more resources. We believe these conversations can lead to fundamental changes in care. If you are or know of a key stakeholder that we need to talk to, to help us with our mission, we would love to hear from you! 

Have you seen our PSA yet with Senator Hatch and Senator Warren yet? We are so grateful to them for using their voice to generate awareness for endometriosis. Make sure to sign up for our updates as we will have more exciting PSA's to unveil in the coming weeks. 

 

We are so thankful for the community support and we will continue to put patients first. We look forward to gathering momentum as we work to put thoughts into action so that we may revolutionize care for all.   

Truly Yours,

The Endo What? Team

Shannon Cohn