Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis

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*This is from a presentation by Shannon Cohn. 

Why Patients Have a Role to Play in Changing the Status Quo in Endometriosis

 by Shannon Cohn, Endo What?

Why am I here? I’m not a doctor, not a nurse – have no medical degree whatsoever. By trade I’m a lawyer and a filmmaker and by necessity in the last few years, an activist. I’m here because we’re in a care crisis with endometriosis. There’s a real disconnect between the physician knowledge base and the patient experience which has lead to no improvement in the long delay to diagnosis nor any real shift in the same, ineffective treatment paradigm of ineffective drugs and surgery. I’m here because patient advocates like me have an important role to play to changing the status quo in endometriosis.

First, we play a pivotal role in patient education and awareness – For example, online patient pages and communities are instrumental in awareness and education.

Nancy’s Nook – over 80k members

Endo Warriors – over 22k members

Endometropolis – over 18k members

Endo What – almost 40k members on all platforms

I was in Sony Singh’s talk earlier this morning and he mentioned the dangers of social media and patient-led advocacy. I don’t think anyone can argue that the current system is failing patients and that’s why they’re searching for answers online.

Beyond social media – there are other patient led efforts. For example, Sallie Sarrel held the first ever Endo Summit this year – in its inaugural conference earlier this year it was groundbreaking in its dedication to bringing patients and healthcare providers together.

We made the film Endo What? because we recognized that patients were going so many years with inaccurate information and as a filmmaker, I’ve seen the power of a tool like film to create change with education. So I amassed interviews with many of the world’s leading experts to give an accurate base of knowledge about endometriosis.

The film has screened on 6 continents and has been translated to 15 languages so far. We partnered with endometriosis and health non-profits around the world to screen and hold public meetings to discuss standards of care.

Which lead to another initiative we launched –

The School Nurse Initiative- Why nurses?

According to the CEC who administered a pre-test to nursing school graduates – 100% failed to correctly identify the correct definition of endometriosis  with 60% believing endometriosis only affects older women. Through our initiative, we’ve sent Toolkits to almost 3,000 school nurses in the United States and we have a goal of reaching 10,000 over the next 2 years.

Why school nurses? Because we’re focusing on decreasing the long delay to diagnosis and school nurses are on the front lines of recognizing symptoms in teenage girls. The Toolkit includes the film, a poster for the school infirmary, an 8 page Educational Booklet, sample Lesson Plan and Discussion Guide. And due to a partnership with Northeastern University, every nurse who reviews the materials and watches a webinar receives 3.5 CEU credits.

Another key area that patient advocates are involved in?

RESEARCH FUNDING

Endometriosis has long been low on the list of annual funding from NIH ($10-6 million depending on the year – $6 million projected 2020)

2 years ago, we had the idea to go after funding from the Department of the Defense as part of their CDMRP or Congressionally Directed Medical Research Program – breast cancer and ovarian cancer get much of their funding through this program.

So, we reached out to Senator Orrin Hatch with this idea. In discussions with him, we wanted to be sure that these efforts were non-partisan and decided to ask Senator Elizabeth Warren to join the effort. She did and our work together has been pivotal.

First, they participated in a PSA campaign with us.

And our work with them was integral in securing approximately $8 million in research funding from the DOD.

So far this money is funding research into genomic research, finding a biomarker for endo, non-hormonal medical therapies, inflammation and malignant transformation of endo and how chronic pain affects patients.

So due to patient-led advocacy, endometriosis received more research funding from the DOD in FY 2018 than it did from the NIH.

Now that Senator Hatch has retired, we’ve continued our work with Senator Warren and now Senator Mitt Romney and they have formally requested funding for FY 2020 for endometriosis.

If there’s to be change in endometriosis, patients are going to be the ones who have to lead it.

Now, we need surgeons and practitioners and professional societies like AAGL to also be part of the change. It’s a multi-faceted effort –

One part will be a new film that we’ll be releasing next year called BELOW THE BELOW  which is a social justice film and following 4 girls and women living with endometriosis over a number of years.

We will continue to work together with patient groups, non-profits, governments and other organizations around the world for change. I accepted a position on the Foundation Board of AAGL because patients must have a seat at the table – our voices must be heard. The fact that the AAGL Board of Directors and Foundation Board recognizes that speaks volumes already on how AAGL truly is the leader in patient-centered care.

One specific way we’ve starting making steps forward – I’ve been working with Heather Guidone of the CEC and Gaby Moawad in taking preliminary steps to set up a global endometriosis Task Force comprised of endometriosis surgeons, professional advocates and other allies to provide for training and Fellowships specifically in endometriosis surgery. Ideally, the Coalition would partner with AAGL, the world’s leader in minimally invasive gynecologic surgery training and promotion.

These are concrete ways we can drive change in the near future and I hope that all of you and AAGL will be part of it. We have to drive the change. Please don’t look at patient led groups with suspicion or dismissal. We are here to be partners and allies in this quest for better endometriosis care.